Navigating Your Basal Cell Carcinoma

Power Passport
Navigating Your
Basal Cell Carcinoma
The Power Passport is designed to enhance the empowered patients’ healthcare as
they navigate the complex treatment of their cancer diagnosis.
Steps to Becoming an Empowered Patient
1. Know your cancer:

Knowledge is the key to understanding the course of your diagnosis, the available treatment
options, and how to effectively manage your health.

Increasing your health literacy can improve your health outcomes

The Institute of Medicine defines health literacy as “The degree to which individuals have the
capacity to obtain, process, and understand basic health information and services needed to make
appropriate health decisions.”

While there is a lot of information on cancer available on the internet, you should always look for
evidence-based information from reputable sources. By this, we mean information that has been
reviewed or created recently, posted by a reputable organization, or includes peer-reviewed
articles as citations. A few reputable sites that provide disease information and other resources for
you to learn about basal cell carcinoma are:
i. The American Academy of Dermatology (AAD) – https://www.aad.org/for-the-public
ii. Skin Cancer Foundation – http://www.skincancer.org/skin-cancer-information/basal-cellcarcinoma
iii. American Cancer Society (ACS) – http://www.cancer.org/cancer/skincancerbasalandsquamouscell/index
iv. National Comprehensive Cancer Network (NCCN) – http://www.nccn.org/patients/
2. Improving communication with your healthcare team (NQF, nd; NPSF, 2015):

Know your health team: Keep a contact list including your primary care physician, dermatologists,
and specialists.

Have a conversation with your healthcare provider, don’t just answer questions.

It’s your story, tell it well: Be Clear, Complete, and Accurate when you tell your doctor or nurse
about your illness.

You are your best historian: Know your past treatments and if they helped, how your illness has
progressed over time, and what your family’s medical history is.
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Power Passport: Basal Cell Carcinoma
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
Be a good record keeper: Keep records of test results, referrals, hospital admissions, surgeries, and
lists of medications. Use a diary to record or create a file on your phone or tablet. Take these with
you at every doctor’s visit.

Know your medications: The brand and generic names, what you take them for, the dosage, how
often you take them, the time of day that you take them, the side effects to be aware of, and if the
medication interacts with food or other drugs.
3. Be informed, involved, and engaged:

Becoming engaged in your own healthcare can significantly improve your healthcare experience.

Speak up about your thoughts, concerns, fears, options – be open and honest with your provider.

In a survey of patients with at least one chronic condition, the more activated patient experienced
less hospital readmissions, reduced medical errors, better care coordination between healthcare
providers, reduced health consequences due to poor communication among providers, and
greater confidence in the healthcare system (AARP Public Policy Institute, 2009).
4. Prepare mentally and emotionally:

Prepare family and caregivers.

Establish a support system.
Key Questions to Ask Your Treatment Team

As part of the “Ask Me 3® program, the National Patient Safety Foundation encourages patients to ask
their healthcare providers three questions:
1. What is my main problem?
2. What do I need to do?
3. Why is it important for me to do this?

See the ACS guides on questions to ask your doctor regarding a diagnosis of BCC:
o
http://www.cancer.org/cancer/skincancer-basalandsquamouscell/detailedguide/skin-cancerbasal-and-squamous-cell-talking-with-doctor
o
www.cancer.org/acs/groups/cid/documents/webcontent/acsq-019981-pdf.pdf
Know Your Cancer: Basal Cell Carcinoma
Basal cell carcinoma (BCC) is a slow-growing, invasive, malignant skin tumor (Bath-Hextall & Perkins, 2014). BCC
is the most common form of all the skin cancers and may appear as a growth that is flat or as a small, raised
pink/red translucent shiny area that may bleed following a minor injury (American Cancer Society, 2015).
Individuals at risk of developing BCC include fair-skinned individuals and those with history of intense or
prolonged ultraviolet light exposure, of ionizing radiation exposure or arsenic ingestion, of immune
suppression, or with genetic conditions that increase risk of skin cancer (National Cancer Institute, 2015).
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Available Treatment Options
While surgery remains the standard of care for most patients, novel treatment options are needed for those
with unresectable, locally advanced, or metastatic disease.
1. Surgical options:
a. Curettage and electrodessication
b. Mohs Micrographic Surgery
c. Excisional Surgery
d. Cryosurgery
e. Laser Surgery
2. Non-surgical options:
a. Radiation
b. Photodynamic therapy
c. Topical medication: Imiquimod and 5-Fluorouracil (5-FU) are FDA approved for superficial BCCs
3. Targeted agents:
Scientific research has established the role of the hedgehog signaling pathway as a driver of BCC.
Smoothened inhibitors target and block the smoothened (SMO) transmembrane protein that provides
activating signals to the hedgehog pathway (Caro & Low, 2010). Two key smoothened inhibitors
include:
o
Vismodegib which is FDA approved for the treatment of adults with metastatic BCC or with
locally advanced BCC that has recurred following surgery or who are not candidates for surgery,
and who are not candidates for radiation.
o
Sonidegib is under clinical investigation, but has demonstrated promising results in BCC.
Available Clinical Trials

Find clinical trials near you to discuss with your doctor.

Search for clinical trials: http://www.cancer.gov/clinicaltrials/search
Cancer type: Nonmelanomatous skin (Squamous and basal cell carcinoma)
Possible Side Effects and Management of Adverse Events
The common side effects of hedgehog inhibitors include:
 Muscle spasms
 Tiredness
 Constipation
 Hair loss
 Nausea
 Vomiting
 Dysgeusia
 Diarrhea
 Joint aches
 Weight loss
 Decreased appetite
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Several resources are available to mitigate and manage these adverse events. The following website can
provide additional information and educational resources:

Vismodegib Side Effect Tips and Resources: http://www.erivedge.com/patient/side-effects/side-effecttips.html

Cancer Care: http://www.cancercare.org/diagnosis/basal_cell_cancer

Cancer.Net – Side Effects: http://www.cancer.net/navigating-cancer-care/side-effects
Improving Treatment Adherence
By the time a medication is FDA approved, many factors have been defined; such as, the right amount/dosage,
the right length of time/course, and the frequency of taking the drug. Deviation from your treatment schedule
can render the medication ineffective and result in disease progression. Several factors may prevent you from
taking your medications on time; however, practical tools are available to reduce or eliminate these barriers
(Adapted from ONS, 2009):
1. Cost of therapy. Oncology drugs are typically expensive and copays may be high; however, instead of
discontinuing your medication, talk to your doctors and nurses. Oncology providers increasingly offer
resources to determine if copay and reimbursement assistance is available or if the maker of the drug
has a patient program that can assist with payment for or access to your oncology treatment.
a. Partnership for Prescription Assistance: https://www.pparx.org
b. Patient Access Network (PAN) Foundation: http://www.panfoundation.org
c. Patient Advocate Foundation: http://www.patientadvocate.org
2. Side-effects. The side-effects from oncology drugs can have a detrimental effect on your everyday
existence. Stopping medication due to side-effects without consulting a physician is not
recommended. Talk to your healthcare team and let them know the side effects you are experiencing
and how it affects your daily life.
3. You forgot to take it:
a. Create a schedule using a diary, app, or internet tracking tool (e.g. MyMedSchedule.com). Take
the medication at the same time every day (e.g. just before bed or with breakfast).
b. Use pill reminders/pill boxes.
c. Place your medication in an open area where you can see it (make sure your medication is away
from children).
d. Ask family members to help keep you on track.
e. Keep a current list of medications.
f.
© 2015 Rockpointe
Do not forget to refill your treatment. Most pharmacies offer automatic refills for the course of
your treatment. Check your insurance, it may be cheaper to receive your drugs through a mailorder pharmacy.
Power Passport: Basal Cell Carcinoma
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Minimize Your Risk of Recurrence

Protect yourself from harmful sun rays (adapted from Be Sun Smart℠: Protect Yourself from the Sun and
The Mini Skin Cancer Prevention Handbook).
o
Generously apply a broad-spectrum water-resistant sunscreen of SPF 30 or higher.
o
Repeat application of sunscreen every two hours.
o
Wear protective clothing, broad-brimmed hat, and UV-blocking sunglasses.
o
Seek shade when appropriate. The sun’s rays are strongest between 10 am and 4 pm (If your
shadow is shorter than you, seek shade).
o
Be extra cautious near water, snow, and sand as they reflect the sun’s rays.
o
Get vitamin D safely through your diet.
o
Avoid tanning beds and UV tanning booths.
o
Check your skin for any changing, growing, or bleeding areas and see a dermatologist.

Confused about which sunscreen to use? Check out the Skin Cancer Foundation’s guidance:
http://www.skincancer.org/prevention/sun-protection/sunscreen.

The NCCN clinical guidelines (version 1.2015) recommend that:
o
Patients with BCC should be monitored with a complete skin exam every 6-12 months for life
with subsequent patient education regarding sun protection and self-examination.
o
Patients at high-risk of developing multiple primary tumors should undergo increased
surveillance and consideration of prophylactic measures.
Patient Education Resources

AAD resources and body mole map [https://www.aad.org/spot-skin-cancer/understanding-skincancer/how-do-i-check-my-skin/what-to-look-for]

ACS What's Your Sun Safety IQ? [http://www.cancer.org/healthy/toolsandcalculators/quizzes/sunsafety/index]

ACS After Treatment Topics [http://www.cancer.org/cancer/skincancerbasalandsquamouscell/detailedguide/skin-cancer-basal-and-squamous-cell-after-lifestyle-changes]

Cancer 101 (C101): Navigating Cancer, C101 Toolkit [http://cancer101.org]

Cancer.Net: Navigating Cancer Care [http://www.cancer.net/navigating-cancer-care]
References
AARP Public Policy Institute (2009). Beyond 50.09 Chronic Care: A Call to Action for Health Reform. Published in
AARP Magazine.
American Cancer Society. Cancer Facts & Figures 2015. Atlanta: American Cancer Society; 2015.
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Power Passport: Basal Cell Carcinoma
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Bath-Hextall F, Perkins W. Basal Cell Carcinoma in Evidence-Based Dermatology, 3 (eds Williams HC, Bigby M,
Herxheimer A et al.). Oxford, UK: John Wiley & Sons, Ltd; 2014, doi: 10.1002/9781118357606.ch33.
Caro I, Low J. The role of the hedgehog signaling pathway in the development of basal cell carcinoma and
opportunities for treatment. Clin Cancer Res. 2010;16:3335-3339.
National Cancer Institute. Genetics of Skin Cancer (PDQ®), 2015. Retrieved from:
www.cancer.gov/cancertopics/pdq/genetics/skin/HealthProfessional/page1/AllPages/Print.
National Patient Safety Foundation (NPSF). Checklist for getting the right diagnosis, 2015. Retrieved from:
www.npsf.org/?page=rightdiagnosis.
National Quality Forum (NQF). My Patient Passport Version 1.0, no date. Created by the NQF Patient and Family
Engagement Action Team.
Oncology Nursing Society (ONS). Tools for Oral Adherence Toolkit, 2009.
This patient education tool is a companion to “Understanding the Evolving Strategies to Improve Patient
Outcomes in Basal Cell Carcinoma,” a CME-certified activity jointly sponsored by Potomac Center for
Medical Education and Rockpointe Oncology
This activity is supported by an educational grant from Novartis Pharmaceuticals Corporation.
© 2015 Rockpointe
Power Passport: Basal Cell Carcinoma
Oncology
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