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. © 2015 Rockpointe Power Passport: Basal Cell Carcinoma Page 1 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). © 2015 Rockpointe Power Passport: Basal Cell Carcinoma Page 2 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 © 2015 Rockpointe Power Passport: Basal Cell Carcinoma Page 3 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 Page 4 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. © 2015 Rockpointe Power Passport: Basal Cell Carcinoma Page 5 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 Page 6
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