1. science
2. medicine
3. surgery

A practical guide to tests
and treatments
Contents
Contents
About this booklet
4
Section 1: Risk-reducing breast surgery
7
Risk-reducing breast surgery – terms explained
8
Risk-reducing breast surgery and family history
11
Your feelings about risk-reducing surgery
13
Options for women who are at increased risk of
developing breast cancer 15
Risk-reducing mastectomy and breast cancer risk
18
Making your decision
19
Timing of risk-reducing mastectomy
23
Having risk-reducing breast surgery
26
Questions to ask your breast surgeon
33
Follow-up after risk-reducing breast surgery
35
Section 2: Breast reconstruction
36
Breast reconstruction
38
Breast reconstruction surgeons
42
Questions to ask your reconstruction surgeon
44
Types of breast reconstruction
47
Reconstruction using a breast implant
48
1
Understanding risk-reducing breast surgery
Reconstruction using your own tissue (flap reconstruction)
58
Reconstruction using tissue from your back
(latissimus dorsi flap or LD flap)
60
Reconstruction using tissue from your tummy
area (abdomen)
66
Reconstruction using tissue from other areas of
your body
74
New methods in breast reconstruction
78
Table comparing breast reconstruction options
80
The nipple
82
Recovery after breast reconstruction
85
Possible problems after breast reconstruction
90
Emotional effects
94
Sex after breast surgery
95
Making positive decisions
96
How we can help you
98
Other useful organisations
102
Further resources
104
Your notes and questions
107
2
Understanding risk-reducing breast surgery
About this booklet
This booklet is for women who are considering
risk-reducing breast surgery because they have
been told they have a significantly increased risk
of developing breast cancer compared with the
general population.
The booklet is divided into two main sections. The first section
aims to help you understand what risk-reducing breast surgery
is and what it involves. The second section discusses the
possible options for breast reconstruction.
In a booklet of this size, it isn’t possible to cover all the issues about
risk-reducing breast surgery in great depth. Our information
will hopefully help you to understand more about some of the
issues involved. You will then be in a better position to discuss
them more fully with a healthcare professional and you’ll know
what questions you need to ask.
A lot of the information here is about the different breast
reconstruction techniques. Making a decision about whether
to have reconstruction or not, and which type of reconstruction
to have, can be difficult. Knowing more about the different
techniques and what is involved may help you to make
these decisions.
Some parts of the booklet might not be relevant to your situation.
The list of contents will help you find information that’s useful
for you.
4
About this booklet
Throughout the booklet we’ve included some comments from
people who have had risk-reducing breast surgery, which
you might find helpful. The quotes are from our video about
Wendy and her daughter Becky, who both had risk-reducing
breast surgery after discovering they had an inherited risk of
developing breast cancer. You can watch the whole video at
macmillan.org.uk/genetictesting
We hope this booklet answers some of your questions and
helps you deal with some of the feelings you may have.
We’ve also listed other sources of support and information,
which we hope you’ll find useful.
We can’t advise you about the best treatment for you.
This information can only come from your doctor,
who knows your full medical history.
If you’d like to discuss this information, call the Macmillan
Support Line free on 0808 808 00 00, Monday–Friday,
9am–8pm. If you’re hard of hearing you can use textphone
0808 808 0121, or Text Relay. For non-English speakers,
interpreters are available. Alternatively, visit macmillan.org.uk
Turn to pages 102–106 for some useful addresses and
websites, and pages 107–108 to write down questions for
your doctor or nurse. If you find this booklet helpful, you could
pass it on to your family and friends. They may also want
information to help them support you.
5
Section 1: Risk-reducing breast surgery
Section 1: Risk-reducing
breast surgery
Risk-reducing breast surgery – terms explained
8
Risk-reducing breast surgery and family history
11
Your feelings about risk-reducing surgery
13
Options for women who are at increased risk of
developing breast cancer 15
Risk-reducing mastectomy and breast cancer risk 18
Making your decision
19
Timing of risk-reducing mastectomy
23
Having risk-reducing breast surgery
26
Questions to ask your breast surgeon
33
Follow-up after risk-reducing breast surgery
35
7
Understanding risk-reducing breast surgery
Risk-reducing breast surgery
– terms explained
The breasts
The breasts are made up of fat, supportive (connective)
tissue and glandular tissue that contains lobes. The lobes
(milk glands) are where breast milk is produced. These are
connected to the nipple by a network of milk ducts.
Under the skin, an area of breast tissue extends into the armpit
(axilla). The armpits also contain a collection of lymph nodes
(glands), which are part of the lymphatic system. There are also
lymph nodes just beside the breastbone (internal mammary
lymph nodes) and behind the collarbone (see next page).
Muscle
Lobe
Fatty tissue
Rib
Nipple
Milk duct
The breast
8
Risk-reducing breast surgery – terms explained
Lymph
nodes in
the armpit
(axilla)
Internal
mammary
lymph nodes
The lymph nodes close to the breast
9
Understanding risk-reducing breast surgery
Bilateral risk-reducing mastectomy
Bilateral risk-reducing mastectomy (also called bilateral
prophylactic mastectomy) is the surgical removal of both
breasts to help reduce the risk of developing breast cancer.
It’s different from a mastectomy that’s carried out as part of
cancer treatment. Bilateral risk-reducing surgery is carried out
even though there is no evidence of cancer in the breasts.
Contralateral mastectomy
Women with a strong family history of breast cancer and
who have cancer in one breast sometimes decide to have the
other breast removed to reduce the chance of getting breast
cancer again. This is called contralateral mastectomy.
This booklet is mainly about bilateral risk-reducing mastectomy,
although much of it will be relevant if you are considering
having contralateral mastectomy.
Breast reconstruction
Risk-reducing mastectomy can usually be followed by breast
reconstruction (the formation of new breast shapes). This can
be done either during the same operation (immediate
reconstruction) or at a later date (delayed reconstruction).
This is optional – not everyone who decides to have risk-reducing
mastectomy will want to have breast reconstruction.
10
Risk-reducing breast surgery and family history
Risk-reducing breast surgery
and family history
National UK guidance on familial breast cancer (breast cancer
that runs in families) says that surgery to reduce the risk of
breast cancer is only appropriate for a small number of women.
These women are from families that have a very high risk of
developing breast cancer.
You may wish to think about having this type of surgery if
you have:
•• a strong family history of breast and/or ovarian cancer
– especially if breast cancer was diagnosed among several
close blood relatives on the same side of the family (such as
grandmother, mother or sisters) and before the age of 50
•• had a positive test for any of the main gene mutations (changes)
that are linked to an increased risk of breast cancer – BRCA1
or BRCA2, or the rarer TP53 or PTEN
•• already had breast cancer and have a high risk of
developing it in the other breast.
You may find it helpful to read our booklet
Cancer genetics – how cancer sometimes runs in
families, which explains how specific genes are
sometimes involved in the development of certain
cancers. It also describes the support and information
you can get from your local family cancer clinic.
11
Understanding risk-reducing breast surgery
At your local family cancer clinic a clinical geneticist or genetic
counsellor will be able to discuss your risk of developing breast
cancer. They can also talk about ways in which you may be
able to reduce or manage this risk.
We have a video on our website explaining genetic
counselling at macmillan.org.uk/geneticcounselling
There is also a video of someone talking about their
own experience of genetic testing and risk-reducing
breast surgery at macmillan.org.uk/genetictesting
The decision whether or not to have risk-reducing breast
surgery is a highly personal one – no two women are exactly
the same and every woman’s situation is unique.
If anyone else in your family is worried about breast
and/or ovarian cancer, our online tool OPERA can
give them personalised information about their risk.
OPERA is based on guidance on familial breast cancer
from the National Institute for Health and Clinical
Excellence (NICE). OPERA isn’t intended to take the
place of professional genetic counselling services.
You can access OPERA at macmillan.org.uk/opera
12
Your feelings about risk-reducing surgery
Your feelings about
risk-reducing surgery
How you feel about risk-reducing breast surgery will depend
on many things such as your risk of developing breast cancer,
your experience of breast cancer within your family and how
you feel about your breasts. If you have a partner, their feelings
may also help shape your decisions.
Other things that may influence your decision are your
cultural and religious beliefs, as well as your level of fitness
and general well-being.
It’s a good idea to discuss your situation with a range of
professionals (see pages 26–27) including your GP, a genetic
counsellor/clinical geneticist, a psychologist, a breast surgeon
and a clinical nurse specialist. It’s helpful to involve your partner,
a relative or a close friend in the discussions about the risks
and benefits of this type of surgery. It’s important to give
yourself plenty of time to weigh up the potential advantages
and disadvantages before making a decision.
Remember, none of these discussions will commit you to a
decision – they can simply help you to make up your mind.
13
Options for women who are at increased risk of developing breast cancer
Options for women who
are at increased risk of
developing breast cancer
Although this booklet is about risk-reducing breast surgery,
there are several options for women who have an increased
risk of developing breast cancer.
Regular breast screening
This involves regular mammography (breast x-rays) and/or
MRI scans (scans that use a magnetic field to build up a
picture of the breasts).
Regular breast screening can help to find breast cancer at an
early stage, but it won’t prevent it. Breast cancers found at an
early stage are often curable.
UK guidelines recommend that women are offered yearly
mammograms if they are aged 40–49 and have an increased
risk of developing breast cancer. They also recommend that
MRI scans should be available to some women under the age
of 50 who are at a greatly increased risk of developing breast
cancer (see page 11).
If you aren’t having regular screening and think you should be,
talk to your GP. Your GP will be able to assess your risk and
may refer you to a genetic clinic for further assessment and
advice about screening and treatment to reduce your risk
(if you need it).
15
Understanding risk-reducing breast surgery
To find out more about early detection and screening,
you could read our booklet Understanding breast
screening or our fact sheet Breast screening in women
under 50 with a family history of breast cancer.
Removal of the ovaries and fallopian tubes
(risk-reducing bilateral salpingo-oophorectomy)
Surgery can be carried out to remove both the ovaries and
fallopian tubes to reduce the risk of cancer developing.
Women who inherit the BRCA1 or BRCA2 faulty genes have a
higher risk of developing both ovarian and breast cancer.
Risk-reducing bilateral salpingo-oophorectomy may sometimes
be used to reduce the risk of ovarian and breast cancer in
women who have inherited the BRCA faulty genes. It may be
offered in addition to risk-reducing mastectomy rather than
instead of it.
As surgery to remove the ovaries makes a woman infertile,
risk-reducing bilateral salpingo-oophorectomy is usually
only carried out when a woman has completed her family.
After surgery, hormone replacement therapy (HRT) is usually
given until the time a woman would normally expect to have
her menopause. This is to prevent menopausal symptoms.
In this situation, the use of HRT does not increase the risk
of breast cancer.
Your specialist team will be able to tell you more about this
type of surgery and discuss whether it’s suitable for you.
16
Options for women who are at increased risk of developing breast cancer
Using drugs to prevent breast cancer
(chemoprevention)
Some drug treatments, such as tamoxifen and raloxifene,
can help to reduce the risk of breast cancer in women who
have a higher than average risk. However, doctors still don’t
know how effective these are in preventing breast cancer in
women with BRCA mutations.
Drugs that may reduce the risk of breast cancer can also
cause side effects so it’s important to weigh up the risks and
benefits of these treatments. Research is being carried out to
find drugs that can reduce the risk of breast cancer and cause
fewer side effects.
Your hospital team will be able to tell you if you might benefit
from taking drug treatments to reduce your risk of breast cancer.
They can also give you information about any trials that are
testing drugs to prevent breast cancer.
We have more information about research trials in
our booklet Understanding cancer research trials
(clinical trials).
17
Understanding risk-reducing breast surgery
Risk-reducing mastectomy
and breast cancer risk
It’s important to remember that not all women who have
an increased risk of developing breast cancer will actually
develop it. Some women who choose to have risk-reducing
breast surgery may never have developed breast cancer anyway.
However, there is currently no way of knowing whether an
individual woman will develop breast cancer or not. For some
women, risk-reducing breast surgery helps relieve their anxiety
and lessen their fears about developing breast cancer.
It’s impossible for surgeons to remove every single breast cell
during a mastectomy. Usually about 95% of the breast tissue
is removed. Because a small amount of the breast tissue is
left behind after surgery, risk-reducing mastectomy won’t
completely remove the risk of developing breast cancer.
Research has shown that bilateral risk-reducing mastectomy
(see page 10) can reduce the risk of breast cancer in women
who have mutations in the BRCA1 and BRCA2 genes by as
much as 95%. So, although the surgery doesn’t completely
get rid of the risk, it does greatly reduce it.
Some experts believe that after risk-reducing breast surgery
the chance of developing breast cancer is less than 5% (1 in 20).
This means that after having this surgery, a woman’s chance
of developing breast cancer may be less than that of a woman
in the general population. The lifetime risk of a woman in the
general population developing breast cancer is about 12%
(1 in 8).
18
Making your decision
Making your decision
The decision whether or not to have risk-reducing breast
surgery is not an easy one. You may need lots of time to help
you make up your mind and you shouldn’t feel rushed into
making a decision.
The breast unit at the hospital should have a written procedure
(protocol) for the care and support of women considering this
type of surgery. It would include things like who you should see,
and what information you should be given. Don’t be afraid to
ask one of your hospital team to give you more information
about their procedure.
You may find it helpful to hear about the experiences of other
women who are, or have been, in the same situation as you.
Your hospital team may be able to put you in touch with
someone willing to share their experiences.
You can also visit our online community at macmillan.org.
uk/community to chat with people who know what you’re
going through.
However, it’s important to remember that everyone is different,
so what was right for one woman may not be right for you.
It’s important to do what feels right for you and to take as
much time as you need to make your decision.
If you’re concerned about the impact that developing breast
cancer might have on your family, remember this will be greatly
reduced by having risk-reducing surgery. And, you won’t have
19
Understanding risk-reducing breast surgery
to go through routine breast screenings anymore and the worry
that comes with them.
Many women are concerned about how they will look after
risk-reducing breast surgery. They worry it will make them
less attractive and may affect their relationships with others,
particularly a partner or future partner.
It can take time to adjust to your new appearance after surgery
and this can be harder for some women than for others.
Sharing your feelings and concerns with someone you trust,
such as a close friend or your partner, can help. It’s important
to remember that you will still be you, even if your appearance
has changed due to surgery.
It may help to write down what you see as the advantages and
disadvantages of having surgery to help you decide what’s right
for you. You can use the notes pages at the back of this booklet
to do this (see pages 107–108).
We’ve included some possible advantages and disadvantages
of having risk-reducing surgery here.
Advantages
•• The operation greatly reduces your risk of breast
cancer (by about 95%).
•• After the operation most women say they feel much less
anxious about getting breast cancer and about the impact
it could have on their family.
•• You won’t need to have breast screening.
20
Making your decision
Disadvantages
•• After the operation it can take up to six months or more
to fully recover.
•• As with all operations, there can be complications.
•• Your body won’t look the same and you may not be happy
with the change in your appearance. Some women feel less
confident sexually.
•• You may not develop breast cancer anyway, even if you don’t
have the operation.
•• The results of the surgery are permanent. You can’t change
your mind once you’ve had the operation.
•• If you are having breast reconstruction as well, you’re
likely to need more than one operation to get the best
cosmetic result.
If you don’t want to have risk-reducing mastectomy or you
aren’t ready to make that decision, you can always talk with
your geneticist or hospital team about the other options
available (see pages 15–17).
21
Timing of risk-reducing mastectomy
Timing of risk-reducing
mastectomy
Breast cancers in women who carry breast cancer gene
changes/mutations usually occur at a younger age.
So, the younger you are when you have risk-reducing
surgery, the more likely it is to prevent breast cancer.
However, this is a very individual decision and the potential
benefit of risk-reducing surgery must be balanced with other
issues such as:
•• Your age and risk – your genetic counsellor or breast
surgeon can advise you about how the risk level changes
with age. They can give you an estimate of your chance of
developing breast cancer over the next five years as well as
your risk of developing breast cancer over your lifetime.
•• How anxious you feel about the possibility of getting
breast cancer and the impact it would have on your life.
•• Your plans for having children and breastfeeding
(breastfeeding may reduce your risk of breast cancer).
23
Understanding risk-reducing breast surgery
It’s important to bear in mind that the fitter you are, the less
likely it is that there will be complications following surgery.
Some types of reconstruction won’t be recommended if you
have certain medical conditions such as diabetes or high
blood pressure, or if you are a smoker, and this may affect
your options.
When to have this type of surgery is a very personal choice.
Discussing the above points with your breast surgeon and
clinical nurse specialist can help you make your decision.
‘I weighed up all the pros and cons and
looked at every option that was available
to me. I went ahead with the preventative
double mastectomy when I was 24.’
Becky
24
Understanding risk-reducing breast surgery
Having risk-reducing
breast surgery
Treatment planning
Before you have surgery you’ll probably see a number
of healthcare professionals. They work as part of a
multidisciplinary team (MDT), which includes:
A clinical geneticist/genetics counsellor who will be able to
tell you about your risk of breast cancer and by how much this
risk is likely to be reduced if you decide to have surgery.
A consultant breast surgeon who will discuss the surgery
and what it involves. Most breast surgeons who carry out
risk-reducing breast surgery will see you in a breast clinic
at least twice before you have to make a decision. They will
answer your questions and discuss any anxieties.
A clinical nurse specialist who will give you information and
support during your treatment.
A psychologist who your consultant may also refer you to,
to help you think and talk through your feelings and expectations.
They will be able to help you prepare for the surgery and for
what to expect afterwards.
Some women worry about being referred to a psychologist
but it’s often a normal part of preparing for risk-reducing
breast surgery.
26
Having risk-reducing breast surgery
A plastic surgeon who you may see if you decide to have
immediate reconstructive surgery. They will work alongside
the breast surgeon during your operation. Some surgeons are
trained in both breast surgery and plastic surgery. They are
called oncoplastic surgeons (see also page 42).
Your consultant or nurse may be able to arrange for you to
look at photographs of women who have already been operated
on by your surgeon. They may also be able to put you in
contact with other women who have had similar surgery.
See pages 52–53, 63 and 70 for some photographs of
women who’ve had different types of reconstruction.
You can contact Breast Cancer Care (see page 102) who may
be able to put you in telephone contact with another woman
who has had risk-reducing surgery.
The surgery
Risk-reducing mastectomy is major surgery involving a general
anaesthetic. During the operation the surgeon removes both
entire breasts with or without the skin and/or nipples. The lymph
nodes and underlying muscles of the breasts are not removed.
Bilateral risk-reducing mastectomy without reconstruction takes
about 2–3 hours. The operation takes longer if it also includes
breast reconstruction.
27
Understanding risk-reducing breast surgery
Types of surgery
Different types of surgery can be used (see below). You will
be assessed by your breast surgeon who will then recommend
the most appropriate operation for your situation. They will also
give you more detailed information about the type of operation
you will have.
Your surgeon may use slightly different terms to those
used here.
Total mastectomy
Total mastectomy is also sometimes called a simple mastectomy.
It involves removing as much of the breast tissue as possible.
The nipple (which contains breast ducts), the areola (the coloured
skin around the nipple) and about half of the skin covering the
breasts is removed. It can’t be guaranteed that all the breast
tissue has been removed, but only a very small amount will be
left after this operation.
Skin-sparing mastectomy
This involves removing as much of the breast tissue as possible
including the nipple and the areola. The skin covering the breast
is not removed, and this helps to form the shape of the breast
when reconstruction is done. With skin-sparing mastectomies
the surgical cuts are usually shorter so the scars are more discreet.
Many women who have risk-reducing surgery will be offered
skin-sparing mastectomies.
Nipple-sparing (subcutaneous) mastectomy
This involves removing as much of the breast tissue as possible
usually through a cut (incision) in the fold under the breast,
leaving in place the skin, the nipple and the areola.
28
Having risk-reducing breast surgery
Nipple preservation
It may be possible to keep the nipple. Your surgeon will discuss
this with you before the operation. However, keeping the nipple
and areola can sometimes mean that a small amount of breast
tissue is left behind. There’s only a very small risk of cancer
developing in this tissue but it’s important to discuss with your
surgeon the risks and benefits of keeping the nipple and areola.
Keeping the nipple is accepted by most surgeons as safe.
Tests on the removed breast tissue
After your surgery, samples of the breast tissue that has been
removed are sent to a laboratory and examined under a
microscope. This is to see if there are any changes in the cells
that might be the early stages of cancer. If any cancerous
changes are found, your doctors will talk to you about any
treatment you might need.
After risk-reducing breast surgery
During the operation you will have a drip (infusion) into a vein
in the back of your hand or in your arm. The drip is to keep you
hydrated and will stay in for a short time after the operation.
It will be removed when you’re able to drink enough. If you’re also
having reconstructive surgery using tissue flaps (see page 58)
you’ll also have a catheter to drain urine from your bladder.
This will be taken out once you’re able to get up and move around.
Pain
After your operation you may have some pain and discomfort
around the wound(s). This may continue for several weeks.
You’ll be given painkillers and it’s important to take them regularly
as prescribed. Let your nurses and the doctor know if you still
have pain so that more effective painkillers can be given.
29
Understanding risk-reducing breast surgery
Some painkillers can cause constipation. Let your doctor know
if you experience this. They will be able to prescribe medicines
known as laxatives to help relieve constipation. Alternatively,
you can buy laxatives from your local chemist.
Wounds and drainage tubes
The mastectomy wound(s) will be covered by dressings.
There will be a drainage tube or tubes coming out of the
wound(s) attached to a small container to collect any excess
blood or body fluid. This will be removed once the drainage
has slowed, which is usually within a few days of the operation.
After a risk-reducing mastectomy (with or without reconstruction)
the wounds should heal completely within six weeks of surgery.
Fluid can sometimes build up in the area around the wound
after the drain has been removed. This is called a seroma.
The fluid lessens with time and usually stops building up within
a few weeks. It may need to be drained off with a fine needle
and syringe by your nurse or doctor.
Time in hospital
After bilateral mastectomy with reconstruction you can usually
expect to stay in hospital for a few days, but this may be longer
depending on the type of reconstruction (see page 47). If you
have bilateral mastectomy without reconstruction your stay in
hospital may be shorter. Your specialist team will be able to
give you more information about how long you can expect to
stay in hospital.
30
Understanding risk-reducing breast surgery
Recovery
This can take some time and will depend on the type of surgery
you’ve had. Many women want to know when they can get
back to doing everyday things like carrying the shopping
or gardening.
This will vary depending on the type of surgery you’ve had and
how you feel. It’s a good idea to discuss this with your surgeon
or breast care nurse.
Numbness
After a mastectomy you’ll usually have some numbness or
pins and needles across your chest/reconstructed breasts
or underneath your upper arms. These symptoms improve
over months to years but it’s usual to have some permanent
numbness. You’ll find that you will adjust to this over time.
Driving
It’s usually fine to start driving again when you feel that you
could safely do an emergency stop or move the steering wheel
around suddenly, if necessary. Some women find that this is
possible within a few weeks of the surgery and others find
that it takes longer. Some insurance companies have specific
guidelines about when you can drive again after an operation,
so you should check this with your car insurance company.
32
Questions to ask your breast surgeon
Questions to ask your
breast surgeon
It often helps to have a list of questions to ask your breast
surgeon and specialist nurse. This can help you gather the
information you need before you decide what to do.
Here are some suggestions:
•• What types of surgery are suitable for me and why?
•• What are the possible complications or risks of the surgery?
•• Where will cuts be made and what might the scars look like?
•• How long will it take for me to get over the operation?
•• If I decide to have surgery, how long will I have to wait to
have it done?
•• Can I talk to someone who has had risk-reducing surgery?
•• Can I talk to somebody about the possible emotional effects
of having a risk-reducing mastectomy?
•• What type of support will be available to me after the
operation? (This is just as important as support offered
before the operation.)
•• If I decide not to have breast reconstruction, is there anyone
who can give me advice about breast prostheses, bras and
swimwear, etc?
If you’re thinking about breast reconstruction as well, you may
want to ask further questions about that (see pages 44–45).
33
Follow-up after risk-reducing breast surgery
Follow-up after risk-reducing
breast surgery
After your surgery, you will have a follow-up appointment
to check that your wounds have healed well and that your
recovery is as expected. Your follow-up appointment will be
a good time for you to talk to your hospital team about any
concerns you may have.
You won’t need to have any further screening tests following
risk-reducing breast surgery. However, you should still check
your breast area regularly for any new lumps as there is still
a very small risk you may develop breast cancer.
If you notice any lumps, or are concerned about anything else,
you should contact your doctor or nurse for advice.
35
Understanding risk-reducing breast surgery
Section 2: Breast
reconstruction
Breast reconstruction
38
Breast reconstruction surgeons
42
Questions to ask your reconstruction surgeon
44
Types of breast reconstruction
47
Reconstruction using a breast implant
48
Reconstruction using your own tissue
(flap reconstruction)
58
Reconstruction using tissue from your back
(latissimus dorsi flap or LD flap) 60
Reconstruction using tissue from your tummy
area (abdomen)
66
Reconstruction using tissue from other areas of
your body
74
New methods in breast reconstruction
78
Table comparing breast reconstruction options
80
The nipple
82
36
Section 2: Breast reconstruction
Recovery after breast reconstruction
85
Possible problems after breast reconstruction
90
37
Understanding risk-reducing breast surgery
Breast reconstruction
Breast reconstruction can be done at the same time as
risk-reducing mastectomy (immediate reconstruction) or
some time later (delayed reconstruction).
Most women choose to have breast surgery and reconstruction
done at the same time. This leaves fewer scars and can result in
a better appearance (cosmetic outcome). Also, fewer operations
are needed. However, there may be more complications
associated with carrying out both procedures at the same time.
Before having your surgery, it’s important to discuss with your
breast surgeon the advantages and disadvantages of immediate
or delayed reconstruction so you can decide what’s best for you.
What it involves
Breast reconstruction is an operation to make a new breast
shape after a mastectomy. The new breast shape can be made
with a breast implant, by using tissue taken from another part
of your body, or by a combination of both techniques. The next
few chapters explain each type of reconstruction.
Your breast surgeon will advise you on the types of reconstruction
that are most suitable for you. Women often have a choice of
more than one type of reconstruction. The types of reconstruction
that are suitable for you will depend on your:
•• general health and body build
•• age
•• personal preferences.
38
Breast reconstruction
The aim of breast reconstruction is to try to create breast
shapes that look and feel as natural as possible. Results from
breast reconstruction will vary depending on your age,
your general health and your skin. If you smoke there is
a greater risk of problems with all types of reconstruction,
as smoking can affect how well the wounds heal.
To learn more about reconstructive breast surgery options and
the risks associated with them, you can talk to your surgeon.
You can also ask to see photographs of women who’ve had
breast reconstruction. It may also be helpful to talk to women
who have had reconstruction after a risk-reducing mastectomy.
There are a few photographs in this booklet of women who’ve
had different types of breast reconstruction (see pages 52–53,
63 and 70). We also have an online community of people
who share their cancer experiences with each other.
Visit macmillan.org.uk/community
Knowing about the different breast reconstruction options will
help you make the decision that’s right for you.
39
Understanding risk-reducing breast surgery
Thinking about reconstruction
It’s important to have realistic expectations about the possible
result of breast reconstruction. You’ll need to think about the
benefits and consider the limitations before making a decision
about whether to have it done.
Some women who have risk-reducing breast surgery choose
not to have reconstruction. They might prefer to wear breast
forms (prostheses/false breasts) and a special bra. If you decide
not to have breast reconstruction and want to know more about
breast forms, bras and clothes for after surgery, Breast Cancer
Care (see page 102) produces some helpful booklets.
Benefits of breast reconstruction
•• In clothes (including underwear and swimwear)
your appearance will be similar to before the surgery.
•• You won’t have to wear external breast forms (prostheses)
or a special bra.
•• You’ll have a cleavage and be able to wear clothes with a
low neckline.
•• It can help to restore your self-confidence and feelings of
femininity, attractiveness and sexuality.
If you ever need tests to look at the breast area, such as
mammograms or MRI scans, these can still be taken.
However, you won’t routinely need these tests after
risk-reducing surgery.
40
Breast reconstruction
Limitations of breast reconstruction
•• The reconstructed breasts won’t feel or look exactly the same
as before the surgery. They won’t be as sensitive and may
be numb.
•• Most women need several visits to the hospital and further
minor operations to get the best cosmetic results.
•• Recovery takes longer than mastectomy without reconstruction.
•• You may have scars elsewhere on the body (depending on
the type of reconstruction – see table on pages 80–81).
•• The risk of infection or other surgical complications is greater
(see page 90).
Breast reconstruction doesn’t increase the chance of a
cancer developing and it won’t hide a cancer.
41
Understanding risk-reducing breast surgery
Breast reconstruction
surgeons
If you are considering risk-reducing mastectomy with
reconstruction, you may be referred to a breast surgeon
with expertise in both types of surgery. Because breast
reconstruction involves specialised surgery, not all hospitals
have a surgeon who also carries out breast reconstruction.
This may mean you will need to be referred to a surgeon at
another hospital.
Surgeons who do reconstructive breast surgery may be
breast cancer surgeons or plastic surgeons. Some surgeons
have training in both of these specialities and are known as
oncoplastic surgeons. Most larger hospitals in the UK have
an oncoplastic surgeon.
In some hospitals a breast surgeon may do your mastectomy
and another surgeon who is skilled in reconstructive surgery
will do the reconstruction. Some reconstruction operations need
surgeons who are skilled in microsurgery, which is a specialised
technique. These more complex operations will need to be done
by a reconstructive plastic surgeon. You may need to travel to
your regional plastic surgery unit – which may be some distance
from your home – to have this type of operation. However, it
should still be possible to have reconstruction at the same time
as risk-reducing mastectomy.
42
Breast reconstruction surgeons
When you see the reconstructive surgeon you can ask them
about their experience in breast reconstruction. You can
also ask to see photographs of operations they have done.
This can help give you an idea of what may be possible with
reconstructive surgery.
Don’t worry about asking lots of questions and requesting to
see photos of your surgeons’ previous work. They are used to
these sorts of requests, and it could help you make the decision
that feels right for you. And remember, it’s important that both
your breast surgeon and your reconstructive surgeon are
sensitive to your thoughts and feelings about reconstruction.
43
Understanding risk-reducing breast surgery
Questions to ask your
reconstruction surgeon
It can often help to make a list of questions to ask your
breast reconstructive surgeon. The answers to these questions
may help you decide whether you would like to have breast
reconstruction, and which type you’d prefer. Here are a few
questions you might like to ask:
•• What experience do you have in this type of surgery and how
many of these operations do you do each year?
•• Will you be carrying out the operation yourself?
•• What types of reconstruction would be suitable for me?
•• Should I see a plastic surgeon?
•• What are the risks or complications of the different types of
surgery and what are the chances of them happening?
•• What can I expect my reconstructed breasts to look and feel
like: immediately after surgery, six months after surgery,
a year after surgery?
•• Can I have a reconstruction operation in my local hospital?
•• How long will the operation take?
•• How long will I be in hospital?
•• Where will my scars be and what will they look like?
•• Do I need to lose my nipple and what are my options for
nipple reconstruction?
•• Are there any ‘before and after’ pictures that I can see?
44
Questions to ask your reconstruction surgeon
•• How long will it take before I can go back to normal
everyday activities?
•• How long would I have to wait before I could have
the surgery?
You may find the answers to some of these questions in the
following sections, but it’s still advisable to check them with
your surgeon as there may be slight differences.
45
Types of breast reconstruction
Types of breast
reconstruction
There are three main types of breast reconstruction:
•• Reconstruction using a breast implant. An implant is
placed under the skin and muscle that covers your chest to
create a breast shape. The most common type of implant
used is an implant/expander (see page 48).
•• Reconstruction using your own tissue. Skin, fat and
sometimes muscle are taken from another part of your body
to make a new breast (see page 58). This type of operation is
more complex than using an implant.
•• A combination of both an implant and your own tissue.
A breast shape is created using both an implant and skin, fat
and sometimes muscle taken from another part of your body.
Your surgeon will advise you on the type of reconstruction
that’s most suitable for you.
The table on pages 80–81 compares various breast
reconstruction options and looks at the methods involved,
what the scars will be like, how long the surgery and
recovery takes, and the effects they have on the body.
47
Understanding risk-reducing breast surgery
Reconstruction using
a breast implant
This type of reconstruction is suitable if you have a skin-sparing
or nipple-sparing mastectomy where some or all of the skin and
sometimes the nipple is kept (see pages 28–29). It can be used
for immediate reconstruction to both breasts. An implant is put
under the muscles covering the chest to replace the lost tissue.
Breast implants are made of a silicone outer cover with either
silicone gel or salt water (saline) inside. They come in a range
of sizes and can be tear-drop or round in shape. The outer
surface may be smooth or textured.
Reconstruction using an implant can be a one-stage or
two-stage procedure.
One-stage procedure
In a one-stage procedure either an implant alone or a special
type of implant called an implant/expander is put under your
chest muscle.
Implant/expanders
Implant/expanders have an outer chamber of silicone gel and
an inflatable hollow inner chamber with a valve (port). Salt water
(saline) can be injected through the valves into the hollow saline
chamber to expand them. They are expanded over time so that
the muscles covering them stretch to form the new breast shapes.
48
Reconstruction using a breast implant
After an operation to place the implant/expanders under your
chest muscle, it takes a few weeks for the tissue to heal.
Then the process of gradually stretching your muscle to form
your new breasts begins.
You’ll have appointments at the outpatient clinic every 1–2
weeks, where a nurse or doctor will inject salt water (saline)
into the implant/expanders through a valve just under the
skin of your chest or underarm. This only takes a few minutes.
You may feel some aching or tightness in the breast area for
a day or two after each injection, but it shouldn’t be painful.
This process continues over several weeks.
Sometimes these implant/expanders are slightly over-inflated to
allow the muscle to stretch. Slightly overstretching the muscle
will help the new breasts have a more natural appearance.
Some of the salt water is then removed through the valves.
The valves are taken out during a small operation which is
carried out under local anaesthetic.
Implant alone
Sometimes, following a skin-sparing mastectomy the chest wall
muscles don’t need to be stretched to help form the new breast
shapes. In this situation, permanent silicone implants are put in
rather than implant/expanders.
Two-stage procedure
In a two-stage procedure a temporary tissue expander is
put under the chest muscle to stretch it. A temporary tissue
expander has a hollow inner chamber, but not a silicone gel
outer chamber like a permanent implant/expander. Salt water
is injected into it through a valve to increase its size and stretch
the chest muscle to form the breast shape.
49
Understanding risk-reducing breast surgery
Once the temporary implants are expanded to their final size,
they are left for a few months to allow the muscle to stretch fully.
You’ll then have a second operation to have the implants taken
out and permanent silicone implants put into the space under
your chest muscle. This gives you your final breast shape.
After there has been complete healing from the one- or twostage implant procedure, a further procedure can be done to
create nipples. There is more detailed information about this
on pages 82–83. Women who have implants may also benefit
from a new procedure known as lipomodelling (see page 78–79).
Lipomodelling can be used to improve the shape and
appearance of the breast.
Benefits and limitations of reconstruction
using implants
Benefits
•• It’s a simple operation that usually lasts 3–5 hours when both
breasts are reconstructed, with a slightly shorter recovery
time than other types of reconstruction.
•• It leaves less scarring on the breasts and no scars elsewhere
on your body.
•• It can give a good appearance, particularly for women with
small breasts.
50
Reconstruction using a breast implant
Limitations
•• Several visits to hospital may be required for tissue
expansion, over the course of a few months.
•• Further operations are usually needed to get the shape,
appearance and size of the breasts to be similar and as
good as possible.
•• Up to 10% of women (1 in 10) who have breast reconstruction
using implants may need to have the implants taken out due
to infection or problems with wound healing.
•• The operation will leave a scar on both breasts. This may be
on either side of the nipple and continue sideways around it,
or run in the crease under the breasts. If the implants are
being put in as a delayed reconstruction, the surgeon may
reuse the mastectomy scars to avoid new scars.
•• Implants give a less natural look and don’t feel as soft or as
warm as a breast formed using your own tissue.
•• The implant can change shape slightly when the muscle over
the implant tightens (contracts) during some movements.
•• Some women may be able to see a rippling effect through
their skin caused by creasing or folds in the implant.
(Turn to pages 78–79 for some newer techniques that may
help to minimise this).
•• The reconstructed breasts will have little or no sensation.
51
Understanding risk-reducing breast surgery
Photo supplied by: Mr mike dixon
Photographs of women who have had reconstruction
using breast implants
Photo supplied by: Mr mike dixon
Bilateral mastectomy and reconstruction of both
breasts using implants (with nipple reconstruction)
Bilateral nipple-sparing mastectomy and reconstruction
of both breasts with implants
52
Reconstruction using a breast implant
PhotoS supplied by: JENNIFER HU
Bilateral mastectomy and
reconstruction of both breasts
using implants, without nipple
reconstruction. (This lady
had large breasts which were
reduced in size.)
53
Understanding risk-reducing breast surgery
Risks
After any operation there is a risk of problems immediately
afterwards, such as bleeding, pain, wound infection and
bruising. You can read more about these problems on
pages 90–92.
Most women don’t have many problems, but possible problems
after reconstruction using implants may include the following.
Infection
It’s uncommon to have an infection in the tissue around the
implant. But if this happens, the implant usually has to be
taken out until the infection has cleared. The implant can then
be replaced with a new one. You’ll be given antibiotics at the
time of your operation to reduce the risk of infection. For more
information on infection, see page 90. If an implant needs
to be removed for a period of time due to infection, the final
appearance of the reconstructed breast may not be as good.
Tightening or hardening of tissue around the implant
(capsular contracture)
A breast implant is not a natural part of you so it’s normal for
your body to try to keep it separate. It does this by forming a
‘capsule’ of scar tissue around the implant. Over a few months
the scar tissue shrinks (contracts) as part of the natural healing
process. In about 10% of women (1 in 10) the capsule can
become very tight. This is called capsular contracture, and if
it happens your breast or breasts may feel hard, painful or
change shape. Sometimes an operation is needed to remove
the implant and replace it with a new one. A new procedure
called lipomodelling (see page 78–79) can also sometimes be
used to help with capsular contracture.
54
Reconstruction using a breast implant
The risk of capsular contracture is increased in women who
smoke or have an infection in their breast. Many surgeons use
implants with a textured outer layer as these are less likely to
cause capsular contracture.
Damage (rupture) to implants
It is very difficult to damage implants so it’s fine to continue
with your normal activities, including sports and air travel,
without worrying that it will affect your implant. However,
sometimes implants can split or tear.
Most silicone implants contain a firm gel that is very unlikely
to leak in significant amounts, even if the outer cover of the
implant is damaged. However, even if silicone does leak,
it’s not dangerous to your health.
Saline-filled implants are not commonly used in the UK as they
are more likely to leak and don’t look or feel as natural as
silicone implants. If saline leaks out of an expander device it
does not cause any harm.
Safety and silicone breast implants
A lot of research in different countries has been carried out
to see whether silicone implants cause health problems.
No link has been found between silicone implants and the
development of cancer or auto-immune conditions.
Recent concerns have focused on the quality of the silicone used
to fill breast implants after French-made PIP breast implants
were found to contain industrial- rather than medical-grade
silicone filler. Concerns were raised that these implants could
have a higher rate of rupture than other implants and a toxic
effect if the unapproved silicone filling leaked out.
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Understanding risk-reducing breast surgery
Although evidence has found that PIP implants can rupture at a
higher rate than other implants, there is no evidence that they
have a toxic effect. These implants were withdrawn from use in
the UK and throughout Europe in 2010. A review is underway
to investigate why these implants were used in the UK.
To comply with safety standards all breast implants that are
used in the UK must first be approved by The Medicines
and Healthcare products Regulatory Agency (MHRA).
This organisation is responsible for ensuring that medical
devices, including breast implants, are safe and fit for use.
If you’re concerned about having breast implants it’s important
to discuss this with your surgeon before your operation.
Your surgeon will be able to tell you what type of implants
you will have and who makes them.
56
Understanding risk-reducing breast surgery
Reconstruction using
your own tissue
(flap reconstruction)
Flap reconstruction can be used to create new breasts after a
mastectomy. This type of reconstruction is more complex than
implant reconstruction. It involves transferring a flap of skin,
fat and sometimes muscle from another part of your body
(the donor site) to your chest wall to create a breast shape.
This type of reconstruction may be suitable for women who:
•• can’t have an implant or tissue expansion because their chest
muscle and skin is too tight, or because a lot of skin and
muscle has been removed from the breasts
•• want large or droopy breasts
•• don’t want breast implants.
Some types of reconstruction use both a flap of tissue and an
implant to help give the right shape, especially if a larger breast
is being reconstructed.
The next three chapters cover the options for having
reconstruction using tissue from:
•• your back (see pages 60–65)
•• your tummy area (see pages 66–73)
•• other areas of your body (see pages 74–76).
58
Reconstruction using your own tissue (flap reconstruction)
Benefits and limitations of reconstruction using your
own tissue
Benefits
•• It gives a more natural shape and feel to the
reconstructed breasts.
•• It’s suitable for small and large breasts.
•• It can create breasts with a more natural droop.
•• It can often avoid the need for implants.
Limitations
•• The operation will leave a scar on the part of your body that
the tissue flaps were taken from. You may also have a patch
or circle of skin (about the size of the areola) on each of the
reconstructed breasts. Because this patch of skin has come
from a different part of your body, it may be a different texture
and colour from the breast skin. Your breast reconstruction
surgeon will be able to give you more information about this.
•• It involves having surgery to an additional part of your body.
•• You will have a longer operation, hospital stay and recovery.
•• The reconstructed breasts have little or no sensation.
59
Understanding risk-reducing breast surgery
Reconstruction using tissue
from your back (latissimus
dorsi flap or LD flap)
This operation uses a muscle called the latissimus dorsi and
some overlying fat and skin from your back. The flap and its
blood supply are tunnelled under the skin below your armpit
and put into position on your chest to make a new breast shape.
Often, there isn’t enough tissue to form the new breast shapes
with LD flaps, so an implant may be put behind each flap.
Occasionally, a large amount of fat is taken with the muscle.
This is called an extended latissimus dorsi flap and may be
done so that implants aren’t needed.
A latissimus dorsi flap may be suitable for women who have
small, medium or large breasts.
It may not be suitable for women who:
•• want very large breasts
•• are very overweight
•• are in certain professions that involve physical activity such as
lifting.
60
Reconstruction using tissue from your back (latissimus dorsi flap or LD flap)
Benefits and limitations of reconstruction using tissue
from your back
Benefits
•• It can be used to create most breast sizes well.
•• The breasts look and feel more natural than with
implants only.
•• It has a high success rate and problems with the flap
are rare.
Limitations
•• This operation takes one surgeon up to 5–6 hours to
reconstruct both breasts. It may be carried out in a specialist
unit by two surgeons, in which case it only takes 3–5 hours.
Recovery time can be up to three months.
•• You will have two scars on your back. The scars are usually
horizontal across the parts of your back where the muscles
are taken from (see page 63). They won’t be seen under a bra.
Sometimes the scars are at more of an angle (diagonal) and
more difficult to cover with a bra, but they can be covered
with a swimsuit. How the scars look on the breasts will
depend on the type of breast surgery you have and whether
you have implants. If you have skin-sparing surgery, each
reconstructed breast may have a small round scar in the
area where the nipples were. If you then have your nipples
and the areas around them (the areola) reconstructed this will
cover the round scars. Before your surgery it’s important that
you discuss with your surgeon where your scars will be and
how they will look so you know what to expect after surgery.
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Understanding risk-reducing breast surgery
•• The skin on your back is a slightly different texture and
colour from the skin on your chest, so the colour of the
reconstructed breasts may not completely match the colour
of the skin on your chest.
•• There may be a small bulge under each armpit where the
muscle is tunnelled under the skin. Your surgeon may be able
to carry out a small procedure to reduce this.
•• The breasts will have little or no sensation (they will feel numb).
•• If you are having larger breasts reconstructed, you may need
an implant as well.
62
Reconstruction using tissue from your back (latissimus dorsi flap or LD flap)
PhotoS supplied by: Mr GERALD GUI
Photographs of women who have had reconstruction
using tissue from their back
Photo supplied by: Mr GERALD GUI
Front and back view two months after skin-sparing risk-reducing
mastectomy using a latissimus dorsi flap (without nipple reconstruction)
Skin-sparing bilateral risk-reducing mastectomies using a
latissimus dorsi flap and nipple reconstruction (with tattooing)
63
Reconstruction using tissue from your back (latissimus dorsi flap or LD flap)
Risks
Fluid under the back wound (seroma)
This is the most common problem soon after LD flap surgery.
Seromas usually get better with time as your body heals,
although they may need to be drained a few times (see page 91).
Occasionally seromas persist (chronic seroma) and need
extra treatment.
Shoulder weakness
After the operation you will have some weakness in your back
and shoulders. This will improve over time as there are many
muscles in the back that can compensate for the loss of the
LD muscle. You should regain full shoulder strength for most
activities 6–12 months after the surgery. But you may notice
weakness during some movements, such as pushing up to get
out of the bath.
Most women can return to daily activities, including sports
such as swimming and tennis, without any problems. However,
the ability to take part in sports such as rowing, rock climbing,
cross-country skiing or playing competitive racquet sports at a
high level are likely to be affected by LD flap surgery.
65
Understanding risk-reducing breast surgery
Reconstruction using tissue
from your tummy area
(abdomen)
This operation uses a flap of skin, fat and sometimes muscle
from the tummy area (abdomen) to create a breast shape.
The procedure also tightens and flattens the tummy area
(similar to a ‘tummy tuck’ operation). The tummy button
is re-sited.
This operation involves two surgical teams. One team carries
out the mastectomies and the other team, which includes a
plastic surgeon, removes the flap and reconstructs both breasts.
Reconstruction using tissue from the tummy area may be
suitable for women:
•• with breasts of any size
•• who don’t want implants.
They may not be suitable for women who:
•• have previous scarring on the tummy area
•• are very slim and don’t have enough tissue on their tummy
•• are very overweight
•• have health problems such as diabetes
•• smoke.
66
Reconstruction using tissue from your tummy area (abdomen)
The types of reconstruction operations that use tissue from the
tummy area are:
•• TRAM flap
•• DIEP flap
•• SIEA flap.
TRAM flap reconstruction
This procedure uses a flap of fat, muscle and skin from your
tummy area to create the shape of a breast. It’s called a TRAM
flap because the rectus abdominis muscle is used and because
the skin is taken transversely from the lower abdomen (from
across your tummy rather than down). After the muscle has
been removed, a mesh may be needed to strengthen the
tummy wall to prevent a bulge or hernia developing.
There are two types of TRAM flap:
Pedicled TRAM flap
A flap of skin, fat and muscle is taken from your tummy, with
its blood supply still connected. It is tunnelled under the skin to
the chest to make a breast shape. The operation takes about
4–6 hours.
Free TRAM flap
A flap of skin, fat and muscle is taken from your tummy.
The tissue and its blood vessels are completely detached from
the tummy and transferred to the breast area. The flap is then
reconnected to a new blood supply in the armpit or near the
breastbone. This involves microsurgery, where the surgeon uses
a microscope to help them see the very fine blood vessels that
need to be joined.
67
Understanding risk-reducing breast surgery
Once the blood vessels are reconnected, the blood supply
to the new breast is better than with a pedicled TRAM flap
because the blood doesn’t have so far to travel. This means
it’s possible to make a larger breast using this technique,
although less muscle is taken from your tummy than in the
pedicled TRAM flap.
Free flap surgery is very specialised and is done by a plastic
surgeon. It takes longer than pedicled flap surgery, usually
about 6–8 hours.
Free DIEP flap reconstruction
A flap of fat and skin (but not muscle) is taken from your
tummy area to create the shape of a breast. The tissue and
its blood vessels are completely detached from your tummy
and reconnected to a new blood supply in your chest area.
It is called DIEP because the deep inferior epigastric perforator
blood vessels are used. This is a free flap operation and requires
microsurgery. Like the free TRAM flap, it is a long and complex
operation and takes about 6–8 hours.
Free SIEA flap reconstruction
Another possible operation using fat and skin from the tummy
area is called the free SIEA flap (superficial inferior epigastric
artery flap). This operation is similar to the free DIEP flap but
uses different blood vessels.
Free TRAM, DIEP and SIEA flaps all involve very specialised
surgery. You may have to travel to a specialist unit for this.
There may be a longer waiting time for these operations.
68
Reconstruction using tissue from your tummy area (abdomen)
Benefits and limitations of reconstruction using tissue
from your tummy area
Benefits
•• The breasts look natural, and feel and move naturally.
•• Implants are not usually needed.
•• The procedure tightens and flattens the tummy area
(similar to a ‘tummy tuck’ operation).
Limitations
•• If you have skin-sparing surgery you may have a small scar
on each breast and a scar on your tummy. The tummy scar is
horizontal and often curves up at the sides. It’s usually placed
near the bikini line. The scar may be visible when you wear a
bikini – your specialist team will be able to tell you if the scar
is likely to be visible.
•• Most operations using tissue from the tummy are successful,
but they have a higher risk of complications with the flap
than operations using tissue from the back.
•• The reconstructed breasts will have little or no sensation.
•• Operations using flaps from the tummy are long (4–8 hours).
•• Recovery from the operation can take four months or more.
69
Understanding risk-reducing breast surgery
Photo supplied by: Mr mike dixon
Photographs of women who have had reconstruction
using tissue from their tummy area
Photo supplied by: Mr mike dixon
TRAM flap reconstruction of the left
breast with nipple reconstruction – over time
the abdominal scar fades to a pale white line
Free TRAM flap reconstruction of both
breasts with nipple reconstruction
70
Reconstruction using tissue from your tummy area (abdomen)
Risks
Complications are more common for women who smoke or
are very overweight. It’s important to talk to your surgeon about
these risks before your operation. They’ll be able to tell you
more about the likelihood of them happening and may also be
able to provide you with statistics from their practice.
Build-up of fluid under the donor wound site (seroma)
This sometimes happens soon after the operation, but usually
gets better within a few weeks.
Hernia or bulge in the tummy area
Taking muscle from your tummy can weaken the tummy wall,
and some women develop a bulge or hernia in the tummy area.
There is a greater chance of a hernia or bulge developing after
a pedicled TRAM flap, as more muscle is taken. To reduce the
risk, you will have a synthetic mesh put into your tummy wall
to support it. Hernias are less common after a free TRAM flap
and are rare after a free DIEP or SIEA flap reconstruction.
Flap re-exploration
Your surgeon and nurses will keep a very close check on the
new tissue in the reconstructed breast in the first few days after
the operation. They will want to be sure that its blood supply
is working well. If there are any signs of a problem, you may
need to go back to the operating theatre to have it checked.
This is done to make sure the new breast tissue stays healthy
and heals well. It’s more likely to be needed after a free flap
operation than after a pedicled TRAM flap.
71
Reconstruction using tissue from your tummy area (abdomen)
Fat necrosis
Fat necrosis can sometimes happen after abdominal flap
surgery. It occurs when fatty tissue is damaged due to poor
blood supply. Fat necrosis feels like a firm lump in the
reconstructed breast. If this happens you may need further
surgery to remove the area of fat necrosis and improve the
appearance of the breast.
Loss of part or all of a new breast
Most operations are successful, but occasionally the new tissue
in the breast fails if the blood supply to the reconstructed breast
isn’t good enough.
Sometimes a small area of the new breast fails soon after the
operation. Another operation may then be needed to improve
the appearance of the breast. If the new flap completely loses
its blood supply, then it will need to be removed. It may be
possible to have a different type of breast reconstruction at a
later date, but not always.
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Understanding risk-reducing breast surgery
Reconstruction using
tissue from other areas
of your body
Breast reconstruction can be done using tissue from another
part of the body. The most common areas are the buttock or
the inner thigh. It may also be possible to take flaps from other
areas where there is enough fat and a suitable blood supply.
Reconstruction using tissue taken from your buttock
Sometimes a new breast is made using fat and skin taken from
the buttock. This may be done when the tummy area can’t be
used, perhaps due to scarring from previous operations or
because there isn’t enough tummy tissue for reconstruction.
There are two different operations that use tissue from
the buttock:
•• Free SGAP flap (superior gluteal artery perforator flap) –
tissue is taken from the upper buttock area.
•• Free IGAP flap (inferior gluteal artery perforator flap) –
tissue is taken from the lower buttock area.
74
Reconstruction using tissue from other areas of your body
Benefits and limitations of reconstruction using tissue
from your buttock
Benefits
•• Larger breasts can be made.
•• The reconstructed breasts look and feel natural.
•• There is no need for implants.
•• There is no weakness in the back or tummy afterwards.
Limitations
•• You will have a round scar on each breast (if you have
skin-sparing surgery) and a scar on your bottom. Having
an SGAP flap leaves a diagonal scar on the upper buttock,
which can usually be hidden by underwear with a high
waistband. An IGAP scar may be hidden in the crease
between the lower buttock and thigh.
•• One buttock may be slightly smaller than the other after
the operation.
•• The reconstructed breasts will have little or no sensation.
•• This type of reconstruction involves complex surgery and a
long operation (6–8 hours).
75
Understanding risk-reducing breast surgery
Reconstruction using tissue from your thigh
(TUG flap)
This is a relatively new operation that uses tissue from the
upper inner thigh, including some muscle. The tissue is removed
and attached to the breast area using microsurgery. It is called
a free TUG flap because the upper gracilis muscle is used in
the operation and the skin is taken transversely (from across
your thigh rather than down). It involves complex surgery and
a long operation (6–8 hours).
It may be suitable for women who are slim and have small
breasts as there isn’t usually enough tissue on the thigh for
larger breasts. As well as a round scar on the new breast,
there will also be quite a long scar on the thigh after the
operation. However, this is usually well hidden because of
its position.
76
Understanding risk-reducing breast surgery
New methods in
breast reconstruction
New reconstructive techniques are being developed all the
time. If your reconstruction surgeon thinks a new technique is
suitable for you, ask them to tell you about their experience of
using it, the benefits and limitations of the technique and the
chances of problems occurring. It’s important that you talk over
new techniques with your surgeon.
Acellular dermal matrices
During implant breast reconstruction surgery, your surgeon
may attach a natural tissue-like substance (called an acellular
dermal matrix) to the chest (pectoral) muscle, to create a sling,
which holds the lower part of the implant. It’s used to expand
the muscle area and so avoids the need for tissue expansion.
Acellular matrices are made from human, pig (porcine) or
cow (bovine) skin or the lining around the heart. They help to
produce a more natural breast shape.
Acellular dermal matrices are relatively new and quite costly.
They aren’t widely available but you can check with your
surgeon to see if they use them.
Lipomodelling
After breast reconstruction there are sometimes dents
or irregularities in the outline (contour) of the new breast.
This can be improved by injecting fat (‘lipo’) into your breast
to fill out the dent. This is a new procedure developed from
liposuction techniques.
78
New methods in breast reconstruction
It can also be used to enlarge a breast and it is now more
widely used in women having implant reconstructions to
make them feel more natural.
Lipomodelling is a day-case procedure and involves taking
fat from one part of your body, for example, the thigh or the
abdomen, and injecting it into the breast. After the procedure,
the area where the fat was taken from can be bruised and
sore but this wears off quickly. The procedure usually needs
to be repeated a few times so that all the uneven areas in
the breast can be smoothed out. Lipomodelling isn’t usually
carried out until the reconstructed breasts have fully healed.
This usually takes about 6–12 months.
Your reconstruction surgeon can give you more
detailed information about new procedures in breast
reconstruction.
The table on the next two pages compares
the different types of breast reconstruction.
79
Scarring on both
sides of the back
(horizontal).
If skin-sparing
mastectomies are
carried out there will
be a circular scar
around the area where
the nipple and areolas
were. This may be
covered with nipple
reconstructions
if wanted.
Scar in the area of
the bikini-line.
Scar may turn
upwards at the sides.
If skin-sparing
mastectomies are
carried out there will
be a circular scar
around the area where
the nipple and areolas
were. This may be
covered with nipple
reconstructions
if wanted.
Scar in the area of
the bikini-line.
Scar may turn
upwards at the sides.
If skin-sparing
mastectomies are
carried out there will
be a circular scar
around the area where
the nipple and areolas
were. This may be
covered with nipple
reconstructions
if wanted.
An SGAP flap leaves a
diagonal scar on the
upper buttock, which
can usually be hidden
by underwear with a
high waistband.
An IGAP scar may be
hidden in the crease
between the lower
buttock and thigh.
If skin-sparing
mastectomies are
carried out there will
be a circular scar
around the area where
the nipple and areolas
were. This may be
covered with nipple
reconstructions
if wanted.
Scars only on breasts
– these are usually
very discreet. Scar
may be on either side
of the nipple or run in
the creases under the
breasts. If the skin is
reduced the scar may
be under the breast in
an inverted ‘T’ pattern,
with the scar coming
up onto the breast (see
pictures on page 53).
Scars
Implant not
generally used.
Reconstruction
using tissue from
your buttock –
SGAP and IGAP
flaps
Nipple reconstructions Nipple reconstructions Nipple reconstructions Nipple reconstructions Nipple reconstructions
available if wanted.
available if wanted.
available if wanted.
available if wanted.
available if wanted.
In some cases the
nipples may be
preserved.
Implant not
generally used.
Reconstruction
using tissue from
your abdomen –
free DIEP or
SIEA flaps
The
nipple
Implant may be placed Implant not
behind the flap.
generally used.
Reconstruction
using tissue from
your abdomen –
pedicled TRAM
flap or free
TRAM flap
One- or two-stage
implant procedure.
Reconstruction
using tissue
from your back –
latissimus dorsi
(LD) flap
Implant
or not?
Reconstruction
using a breast
implant
Table comparing breast reconstruction options
Little disturbance of
muscle strength.
0–3 days
6 weeks
Stay in
hospital
Recovery
time
Special
considerations
2–3 hours
Length
of
surgery
Effects
Reconstructed breasts
on sens- will have little or no
ations in sensation.
breast
Effects
on
muscles
3 months
4–7 days
3–5 hours
Reconstructed breasts
will have little or no
sensation.
May give slight
shoulder weakness.
These types of flaps
require very specialised
surgery. You will need
to be in good general
health to have both
free and pedicled
TRAM flaps. They may
not be suitable for
women who are very
slim, who have scars
on their abdomen
(due to previous
surgery), who are
diabetic, who smoke
or who are overweight.
4–6 months
1 week+
4–8 hours
Reconstructed breasts
will have little or no
sensation.
Risk of weakness in
abdominal muscles
(mesh is used to repair
and strengthen).
These types of flaps
require very specialised
surgery. You will need
to be in good general
health to have these
types of flaps.
They may not be
suitable for women
who are very slim,
who have scars on
their abdomen
(due to previous
surgery), who are
diabetic, who smoke
or who are overweight.
4 months
1 week+
6–8 hours
Reconstructed breasts
will have little or no
sensation.
Reduced risk of
abdominal weakness
as no muscle is taken
from the abdomen
(no mesh needed).
These types of flaps
require very specialised
surgery. They may
be done when tissue
cannot be taken from
the tummy area.
You will need to be in
good general health
to have these types of
flaps. They may not
be suitable for women
who are diabetic, who
smoke or who are
overweight.
4 months
1 week+
6–8 hours
Reconstructed breasts
will have little or no
sensation.
If tissue is taken from
the buttock with an
SGAP flap, the buttock
may be smaller.
Understanding risk-reducing breast surgery
The nipple
It may sometimes be possible to keep your nipples if you
are having risk-reducing breast surgery with immediate
reconstruction. There are two options for keeping your
own nipples:
•• The nipples can be left attached to the skin of the breasts
and only the tissues under the skin are removed.
•• The nipples with or without their surrounding skin may be
removed with the rest of the breast tissue and then attached
(grafted) on to the reconstructed breasts.
Nipple reconstruction
Occasionally nipple reconstruction is done at the same time
as breast reconstruction, but it’s usually done some time
afterwards. This lets the breasts settle into their final shape
so the surgeon can position the nipples accurately. The time
between operations for breast and nipple reconstruction may
vary, but it’s usually about 4–6 months.
Your nipple shape may be reconstructed using a skin flap,
where the surgeon folds skin on your new breasts into a nipple
shape. This procedure can be done under a local or a general
anaesthetic. It’s usually possible to go home on the same day.
When you go home you will have a dressing over the nipple
areas, which is usually left in place and removed when you
attend an outpatient appointment. Your nursing team will
advise you about this.
A reconstructed nipple doesn’t react to temperature changes
or touch – or have the same sensation as a natural nipple.
82
The nipple
Nipple/areola tattooing (micro-pigmentation)
Once you have new nipple shapes, you can have the new nipples
and areas around them tattooed. This gives the nipples and
areola a more natural colour. Nipple tattooing is done in the
hospital and usually takes about 30–40 minutes. You’ll be given
a local anaesthetic cream or injection to numb the nipple and
surrounding skin. The procedure may need to be done more
than once to give the best result. Tattooing isn’t usually painful
but the area may feel tender (like a graze) for a few days
afterwards. Tattoos usually last about 18 months to two years.
Nipple prostheses
If you decide you don’t want to have another operation to make
nipples, you may prefer to have silicone nipples (see below),
which you can attach to your reconstructed breasts. Once the
nipple is fixed to the breasts with a special adhesive, it can stay
in place for up to three months.
Ready-made nipple prostheses come in various shades
and sizes. It may be possible to mould these from the existing
nipples before surgery.
A selection of nipple prostheses
83
Recovery after breast reconstruction
Recovery after breast
reconstruction
Immediately after surgery, your reconstructed breasts may be
covered with dressings. Alternatively, the wounds may be held
together with sticky plastic strips, which should be left in place
until the wounds have healed.
Once the dressings are removed, you can gently shower the
wounds with clean water. Pat the wound areas dry with a clean
towel – don’t rub them. When the wounds have healed you can
bath or shower as normal. Wash with lukewarm water and
unperfumed soap, and rinse the wounds well.
At first, your new breasts may be larger due to swelling,
which can happen after surgery. Your breasts will gradually
get smaller over a few weeks or months.
Your surgical team will let you know how long you can expect
to be in hospital for after your operation. This will depend on
the type of surgery you have and whether you have immediate
or delayed reconstruction (see page 38). After an operation
using tissue from your back you may be in hospital for about
4–7 days. If your reconstructions are done using tissue from
your tummy, you may be in hospital for seven days or more.
If you have implant-based surgery, you may be in hospital
for a few days but this will be longer if you have immediate
reconstruction with implants.
85
Understanding risk-reducing breast surgery
Pain or discomfort
After any type of operation, you will experience some pain or
discomfort. The level of pain women experience after breast
reconstruction varies greatly. Many women need painkillers for
a few weeks after surgery. Make sure you ask for pain-relieving
medicines if you need them. In general, if your pain is well
controlled you’ll recover more quickly after surgery.
Some painkillers may cause constipation so you may need to
take laxatives. Your doctor can prescribe these for you or you
can get them from your local chemist.
Exercises
Your physiotherapist will give you exercises to help your recovery.
At first you may have some discomfort when you move your
arms. But it’s important you continue to use your arms and
do the exercises suggested by your physiotherapist. You’ll also
be given specific exercises to do if you’ve had surgery to other
areas such as your back or tummy.
Work and everyday activities
You’ll probably feel quite tired in the first few weeks after you
get home from hospital. It’s a good idea to have someone
around who can help you for the first few days. After this you
can start looking after yourself and gradually increase your
level of activity – just do light tasks to begin with and slowly
build up what you can do. Don’t do any strenuous housework,
such as vacuuming, or move or lift anything heavy until your
surgeon says it’s okay to do so.
86
Recovery after breast reconstruction
How soon you can return to work depends on the type of
work you do and on the type of operation you’ve had. If your
job doesn’t involve heavy manual work, you may be able to
go back to work sooner. But, it’s important to remember that
you’re likely to feel more tired than usual for a while. You may
also find it difficult to concentrate fully at first.
Driving
In general you can return to driving once you are able to use
the gear lever and handbrake, and provided you could do
an emergency stop or move the steering wheel suddenly if
necessary. Some women are able to drive within a few weeks
of their surgery, while others find it takes longer. Insurance
companies often have their own guidelines about when you
can drive again after an operation, so you should check this
with your car insurance company.
Your sex life
It’s fine to have sex when you feel comfortable enough to do so.
This will probably be a few weeks after your operation, but it
may take longer. Just take things at your own pace and talk to
your partner about any concerns you have. Your breast care
nurse can also advise you. There’s more information about the
effects of breast surgery on your sex life on page 95.
87
Understanding risk-reducing breast surgery
Wearing a bra
There are no set rules about when you can begin wearing a bra
following breast reconstruction. This will depend on the type of
reconstructions you’ve had and the advice of your surgeon.
Some surgeons recommend that women wear a bra immediately
after reconstruction. Others advise women not to wear one to
begin with because they believe this encourages a more natural
droop of the reconstructed breasts, and that wearing a bra
makes little difference to the cosmetic results of surgery.
Your surgeon or breast care nurse can advise you on what’s
most appropriate for you.
If you’re advised to wear a bra to support your newly
reconstructed breasts, a soft supportive bra without underwires
(such as a sports bra) will be more comfortable to begin with.
If you have reconstruction with implants, you may be given
a Velcro band to wear for several weeks. This sits on top of
the implants and helps to make sure they stay in the correct
position and don’t twist. You should wear this night and day.
If you have lipomodelling you should wear a bra for 24 hours
a day. This helps to stop any movement and allows the grafted
fat time to develop a new blood supply.
Looking after your skin
Your wounds may feel itchy as they heal but it’s important not
to scratch them. The itching will reduce as the wounds heal.
It usually takes about six weeks for the wounds to heal fully.
Once your wounds have healed, most surgeons recommend
you massage the skin and scars over your reconstructed breasts
and at the donor site (if you have one) with body oil or cream
88
Recovery after breast reconstruction
at least once a day. Massaging the skin will help to keep it
supple and in good condition. If you have breast implants,
massage can also help reduce the risk of capsular contracture
(see pages 54–55).
Massaging along the length of the scars using moisturiser
or massage oil helps prevent them from sticking to tissue
underneath as it heals. It can also help to speed up the healing
process and soften your scars. Your surgeon or breast care
nurse can tell you what they recommend, and show you how
much pressure to use when massaging.
To begin with, any scars you have will be red (or darker if
you have dark skin), quite firm and may be slightly raised,
but over time they will flatten and fade. If they don’t then your
surgeon can prescribe ointments to reduce swelling and redness.
Everyone’s skin heals differently. If you have dark skin or have
fair, freckled skin, scars can take a bit more time to settle and
may be more noticeable for longer. In general it can take from
18 months to two years for scars to fully settle and fade. If you
have concerns about how your scars are healing, talk to your
nurse or breast surgeon. They can check that everything is
healing as it should be or, if there’s a problem, they can tell
you what can be done to help.
89
Understanding risk-reducing breast surgery
Possible problems after
breast reconstruction
You may not have any problems after surgery. But it can help
to know what the more common problems are so that, if you
do have any, they can be detected and treated early.
Infection
Once you’re home after your operation, check your wounds
regularly. Tell your breast care nurse or doctor immediately if
you have any possible signs of infection such as:
•• increased redness or change in colour over the breasts,
around the scar areas, or both
•• discharge (fluid being released) from the wounds
•• a fever (a temperature above 38°C or 100.4°F)
•• feeling generally unwell.
Your doctor can prescribe antibiotics if needed.
Bruising and bleeding
Bruising to the breast and donor site is very common after
the operation and usually goes away after about three weeks.
Sometimes, after the operation, there can be bleeding and a
build-up of blood (a haematoma) in the breast or donor site.
This usually occurs in the first 24 hours after surgery and can
cause swelling and pain. Sometimes another operation is
needed to stop the bleeding.
90
Possible problems after breast reconstruction
Fluid under the wound (seroma)
After your surgery, it’s normal for some fluid to collect in the
area around the wounds (a seroma). You will have drains in
place to take away this fluid. These are long, thin plastic tubes
attached to vacuum drainage bottles. They are usually removed
several days after your operation. However, after the drains are
taken out, more fluid sometimes collects under the wound.
This may need to be drained by a surgeon or nurse, using
a small needle and syringe.
Chronic pain
Usually, pain gradually reduces in the weeks following surgery.
But occasionally women continue to have pain for months or
even years after the operation. Pain that continues for a long
time is called chronic pain. There are several different causes
of chronic pain, and many of these can be treated. If you have
pain that doesn’t get better, talk to your breast surgeon.
They can do tests to find out the cause or recommend a
treatment that may help.
Keloid scars
Most scars following breast reconstruction heal normally and
gradually fade with time. However, a small number of women
may develop a keloid scar. These are caused by an overgrowth
of tissue along the scars. They are wider than normal scars and
often a different colour from normal skin. They are also raised
above the normal skin. If you are worried about your scars after
your surgery, talk to your surgeon.
91
Understanding risk-reducing breast surgery
What if I am not happy with the results of
my reconstruction?
The way you feel about your breast reconstruction will depend
partly on what you expect from the surgery. Make sure you
discuss your expectations with your surgeon before you decide
to go ahead.
It’s important to wait for several months for the skin and muscle
to stretch, and for the reconstructed breasts to settle into their
final shape, before deciding how happy you are with the result.
Full healing can take about a year.
While many women are satisfied with the results of their
reconstruction, a few may be disappointed with their appearance.
If you have concerns, discuss them with your surgeon or breast
care nurse. Your surgeon may already have plans for an
operation to improve the final result. If you’re still unhappy
following discussions with your surgeon you can, if you wish,
ask to be referred to another surgeon for a second opinion
either at the same hospital or a different hospital.
92
Understanding risk-reducing breast surgery
Emotional effects
Risk-reducing surgery is a big step to take and it can cause
many different emotions and feelings. There may be a sense of
relief when the surgery is over, but it can still take some time for
you to get used to your new appearance. You will already have
had a lot to cope with, such as learning that your family has a
strong history of breast cancer, and worrying about your own
children and other members of your family. Some women feel
the emotional effects more than others.
Many women say that their anxiety about developing breast
cancer is greatly reduced by having risk-reducing breast surgery.
In fact, many would recommend surgery to women in a similar
situation to themselves. However, they may still have feelings of
loss for their previous appearance and sense of health.
There are people and organisations that can help you talk
through and deal with any feelings and emotions you may
have. Your breast care nurse can discuss your situation with
you, and you can also contact one of the organisations listed
on pages 102–103.
‘Since I’ve had the genetic test and I’ve had
the surgery I have a completely liberated
view on life. I live life absolutely fully.’
Wendy
94
Sex after breast surgery
Sex after breast surgery
Having breast surgery may affect your sex life and how you see
yourself as a woman (self image). This often gradually improves
with time. Try not to think that sex can’t be as important in your
life as it was before the surgery. There will often be a period
of adjustment for you and your partner, and with time most
difficulties can be overcome.
You may feel insecure and worry whether or not your partner
will still find you sexually attractive. Partners are often concerned
about how to express their love physically and emotionally
after a woman has had breast surgery. They may not have a
problem with your changed appearance, so it can help to try
to discuss it if you feel that there’s awkwardness between you.
Cuddles, kisses and massages are affectionate and sensual
ways of showing how much you care for someone, even if
you don’t feel like having sex. You can wait until you and your
partner feel ready – there’s no right or wrong time. If you
feel very self-conscious, making love while partly dressed or
keeping the lighting low may be better for you.
If you’ve had breast reconstruction this will create a breast
shape but the sensations in the breast and the nipple will not
be the same as before the original breast surgery. This can
affect sexual arousal if you were previously aroused by having
your breasts touched. Although this can take time to adjust to,
with the support of your partner you will still be able to enjoy a
fulfilling sex life.
95
Understanding risk-reducing breast surgery
Making positive decisions
Whether you decide to go ahead with risk-reducing breast
surgery or not, you may want to choose to make positive lifestyle
changes to improve your health. Positive lifestyle changes include
eating well, keeping to a healthy weight, being physically active,
sticking to alcohol drinking guidelines and stopping smoking.
We can send you more information about how you can maintain
a healthy lifestyle. You can also get advice from your GP or
specialist nurse.
96
Understanding risk-reducing breast surgery
How we can help you
Cancer is the toughest fight most of us will
ever face. But you don’t have to go through
it alone. The Macmillan team is with you
every step of the way.
Get in touch
Macmillan Support Line
Our free, confidential phone
Macmillan Cancer Support line is open Monday–Friday,
89 Albert Embankment,
9am–8pm. Our cancer
London SE1 7UQ
support specialists provide
Questions about cancer?
clinical, financial, emotional
Call free on 0808 808 00 00 and practical information and
(Mon–Fri, 9am–8pm)
support to anyone affected by
www.macmillan.org.uk
cancer. Call us on 0808 808
Hard of hearing?
00 00 or email us via our
Use textphone
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Non-English speaker?
Interpreters are available.
Information centres
Our information and support
Clear, reliable information centres are based in hospitals,
about cancer
libraries and mobile centres,
and offer you the opportunity
We can help you by phone,
to speak with someone
email, via our website and
face-to-face. Find your nearest
publications or in person.
one at macmillan.org.uk/
And our information is free to informationcentres
everyone affected by cancer.
98
How we can help you
Publications
We provide expert, up-to-date
information about different
types of cancer, tests and
treatments, and information
about living with and after
cancer. We can send you free
information in a variety of
formats, including booklets,
leaflets, fact sheets, and
audio CDs. We can also
provide our information in
Braille and large print.
Need out-of-hours support?
You can find a lot of
information on our website,
macmillan.org.uk
For medical attention out of
hours, please contact your GP
for their out-of-hours service.
Someone to talk to
When you or someone you
know has cancer, it can be
difficult to talk about how
you’re feeling. You can call
our cancer support specialists
You can find all of our
information, along with several to talk about how you feel and
what’s worrying you.
videos, online at macmillan.
org.uk/cancerinformation
We can also help you find
support in your local area,
Review our information
so you can speak face-to-face
Help us make our resources
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what you’re going through.
by cancer. Being one of our
reviewers gives you the chance
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illustrations and website text.
If you’d like to hear more
about becoming a reviewer,
email reviewing@
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99
Understanding risk-reducing breast surgery
Professional help
Support for each other
Our Macmillan nurses, doctors
and other health and social
care professionals offer expert
treatment and care. They help
individuals and families deal
with cancer from diagnosis
onwards, until they no longer
need this help.
No one knows more about
the impact cancer has on
a person’s life than those
who have been affected by
it themselves. That’s why we
help to bring people with
cancer and carers together in
their communities and online.
You can ask your GP, hospital
consultant, district nurse
or hospital ward sister if
there are any Macmillan
professionals available
in your area, or call us.
Support groups
You can find out about support
groups in your area by calling
us or by visiting macmillan.
org.uk/selfhelpandsupport
100
Online community
You can also share your
experiences, ask questions,
get and give support to
others in our online
community at macmillan.
org.uk/community
How we can help you
Financial and
work-related support
Find out more about the
financial and work-related
support we can offer
Having cancer can bring extra at macmillan.org.uk/
costs such as hospital parking, financialsupport
travel fares and higher heating
Learning about cancer
bills. Some people may have
to stop working.
You may find it useful to learn
more about cancer and how
If you’ve been affected in this
to manage the impact it can
way, we can help. Call the
have on your life.
Macmillan Support Line and
one of our cancer support
You can do this online on our
specialists will tell you about
the benefits and other financial Learn Zone – macmillan.org.
uk/learnzone – which offers
help you may be entitled to.
a variety of e-learning courses
and workshops. There’s
We can also give you
also a section dedicated to
information about your rights
supporting people with cancer
at work as an employee, and
help you find further support. – ideal for people who want
to learn more about what
their relative or friend is
Macmillan Grants
going through.
Money worries are the last
thing you need when you have
cancer. A Macmillan Grant is
a one-off payment for people
with cancer, to cover a variety
of practical needs including
heating bills, extra clothing,
or a much needed break.
101
Understanding risk-reducing breast surgery
Other useful organisations
Breakthrough Breast
Cancer
Weston House,
246 High Holborn,
London WC1V 7EX
Tel 08080 100 200
Email
[email protected]
www.breakthrough.org.uk
A charity committed to fighting
breast cancer. Its scientific
work aims to discover the
causes of the disease, find
methods of prevention and
develop new treatments.
Also campaigns for policies
that support breast cancer
research and better services,
and promotes breast cancer
education and awareness.
102
Breast Cancer Care
5–13 Great Suffolk Street,
London SE1 0NS
Helpline 0808 800 6000
(Mon–Fri, 9am–5pm,
Sat, 9am–2pm)
Main switchboard
0845 092 0800
Textphone 0808 800 6001
Email
[email protected]
www.breastcancer
care.org.uk
Provides information,
publications, practical
assistance and emotional
support for anyone affected by
breast cancer. Specialist breast
care nurses run the helpline.
Also offers a peer support
service where anyone affected
by breast cancer can be put in
touch with a trained supporter
who has had personal
experience of breast cancer.
Other useful organisations
British Association of
Plastic, Reconstructive
and Aesthetic Surgeons
(BAPRAS)
35–43 Lincoln’s Inn Fields,
London WC2A 3PE
Tel 020 7831 5161
Email secretariat@bapras.
org.uk
www.bapras.org.uk
The professional
representative body for
plastic and reconstructive
surgeons in the UK.
Its website has
information on breast
reconstruction and gives
access to a list of plastic
surgery units in the UK
and Ireland.
The Medicines and
Healthcare products
Regulatory Agency (MHRA)
151 Buckingham Palace Road,
Victoria, London SW1W 9SZ
Tel 020 3080 6000
Email [email protected]
www.mhra.gov.uk
Government agency
responsible for ensuring
that medicines and medical
devices work, and are
acceptably safe, including
breast implants. Its website
also has fact sheets and
information about implants.
The National Institute
for Health and Clinical
Excellence (NICE)
MidCity Place,
71 High Holborn,
London WC1V 6NA
Tel 0845 003 7780
Email [email protected]
www.nice.org.uk
The independent organisation
responsible for providing
national guidance on the good
health and the prevention and
treatment of illness. There is
guidance on familial breast
cancer at www.nice.org.uk/
guidance/cg41
103
Understanding risk-reducing breast surgery
Further
resources
Related Macmillan
information
You may want to order some
of the resources mentioned in
this booklet. These include:
•• Cancer genetics – how
cancer sometimes runs
in families
•• Understanding breast
screening
•• Understanding cancer
research trials (clinical trials)
To order a booklet, visit
be.macmillan.org.uk
or call 0808 808 00 00.
To order a fact sheet,
call 0808 808 00 00.
All of our information
is also available online
at macmillan.org.uk/
cancerinformation
104
Audio resources
Our high-quality audio
materials, based on our
variety of booklets, include
information about cancer
types and different treatments.
They also give advice about
living with cancer.
To order your free CD,
visit be.macmillan.org.uk
or call 0808 808 00 00.
Macmillan videos
There are many videos
on the Macmillan website
featuring real-life stories and
information from health and
social care professionals.
There’s a video about genetic
counselling at macmillan.
org.uk/geneticcounselling
and one about genetic testing
at macmillan.org.uk/
genetictesting
Further resources
Useful websites
A lot of information about
cancer is available on the
internet. Some websites
are excellent; others have
misleading or out-of-date
information. The sites listed
here are considered
by nurses and doctors to
contain accurate information
and are regularly updated:
Macmillan Cancer Support
www.macmillan.org.uk
Find out more about living
with the practical, emotional
and financial effects of cancer.
Our website contains expert,
accurate and up-to-date
information on cancer and its
treatment, including:
•• all the information from
our 100+ booklets and
350+ fact sheets
•• videos featuring real-life
stories from people affected
by cancer and information
from professionals
•• how Macmillan can help,
the services we offer and
where to get support
•• how to contact our
cancer support specialists,
including an email form for
sending your questions
•• local support groups
search, links to other
cancer organisations
and a directory of
information materials
•• a huge online community
of people affected by cancer
sharing their experiences,
advice and support.
www.cancer.gov (National
Cancer Institute – National
Institute of Health – USA)
Gives information on cancer
and treatments.
www.cancerbuddies
network.org
(Cancer Buddies Network)
An online support group for
anyone affected by cancer.
www.cancerhelp.org.uk
(Cancer Research UK)
Contains patient information
on all types of cancer and has
a clinical trials database.
105
Understanding risk-reducing breast surgery
www.healthtalkonline.org
www.youthhealthtalk.org
(site for young people)
Contains information about
some cancers and has video
and audio clips of people
talking about their experiences
of cancer and its treatments.
www.intelihealth.com
(drug and medicines
information)
Easy to use and free from
medical jargon. Has patient
information leaflets that can
be printed off.
www.riprap.org.uk (Riprap)
Developed especially for
teenagers who have a
parent with cancer.
106
Your notes and questions
Your notes and questions
You could use these pages to write down any questions you
want to ask your doctor or nurse, and then to write down the
answers you receive.
107
Understanding risk-reducing breast surgery
108
Disclaimer, thanks and sources
Disclaimer
We make every effort to ensure that the information we provide is accurate and up
to date but it should not be relied upon as a substitute for specialist professional
advice tailored to your situation. So far as is permitted by law, Macmillan does
not accept liability in relation to the use of any information contained in this
publication, or third-party information or websites included or referred to in it.
Some photographs are of models.
Thanks
This booklet has been written, revised and edited by Macmillan Cancer Support’s
Cancer Information Development team. It has been approved by our medical
editor, Dr Terry Priestman, Consultant Clinical Oncologist.
With thanks to: Professor J Michael Dixon, Professor of Surgery and Consultant
Surgeon; Ms Fiona Geddes, Breast Care Nurse; Mr G Gui, Consultant Breast
Surgeon; Ms K Shenton, Consultant Breast Surgeon.
Sources
A beginners guide to BRCA1 and BRCA2. 2011. The Royal Marsden NHS Foundation
Trust, London.
Familial breast cancer: NICE clinical guideline 41. 2006. National Institute for Health
and Clinical Excellence (NICE), London.
The Scottish Government. Cancer Genetics Services in Scotland – Management of
women with a family history of breast cancer: CEL 6 (2009). www.sehd.scot.nhs.uk/
mels/CEL2009_06.pdf (accessed June 2012).
National Mastectomy and Breast Reconstruction Audit 2010. 2010. The NHS
Information Centre, Leeds.
National Mastectomy and Breast Reconstruction Audit 2011. 2011. The NHS
Information Centre, Leeds.
Patenaude, A. Prophylactic Mastectomy: Insights from Women who Chose to Reduce
their Risk. 20w12. Praeger (first edition), Santa Barbara.
109
Understanding risk-reducing breast surgery
Lostumbo L, et al. Prophylactic mastectomy for the prevention of breast cancer.
The Cochrane Library. 2010. 11.
Breast Implants: Information for women considering breast implants. 2011.
Medicines and Healthcare products Regulatory Agency (MHRA), London.
110
Can you do something to help?
We hope this booklet has been useful to you. It’s just one of our
many publications that are available free to anyone affected by
cancer. They’re produced by our cancer information specialists
who, along with our nurses, benefits advisers, campaigners and
volunteers, are part of the Macmillan team. When people are
facing the toughest fight of their lives, we’re there to support
them every step of the way.
We want to make sure no one has to go through cancer alone,
so we need more people to help us. When the time is right for you,
here are some ways in which you can become a part of our team.
5 ways
you can someone
hElP with
cAncer
Share your cancer experience
Support people living with cancer by telling your story,
online, in the media or face to face.
Campaign for change
We need your help to make sure everyone gets the right support.
Take an action, big or small, for better cancer care.
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Or just a cup of tea and a chat. Could you lend a hand?
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Cancer is the toughest fight most of us
will ever face. If you or a loved one has
been diagnosed, you need a team of
people in your corner, supporting you
every step of the way. That’s who we are.
We are the nurses and therapists helping you through
treatment. The experts on the end of the phone.
The advisers telling you which benefits you’re entitled to.
The volunteers giving you a hand with the everyday
things. The campaigners improving cancer care.
The community supporting you online, any time.
The fundraisers who make it all possible.
You don’t have to face cancer alone.
We can give you the strength to get through it.
We are Macmillan Cancer Support.
Questions about living with cancer?
Call free on 0808 808 00 00 (Mon–Fri, 9am–8pm)
Alternatively, visit macmillan.org.uk
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© Macmillan Cancer Support, 2012. 4th edition. MAC11680.
Next planned review 2014. Macmillan Cancer Support, registered
charity in England and Wales (261017), Scotland (SC039907) and
the Isle of Man (604).
Printed using sustainable material. Please recycle.