The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.
Happy 4th folks. Hope you all are enjoying the weekend.
So quick recap of me. Diagnosed with Stage 3A back in February. Mole was on the back of my calf, 1.5mm breslow, cancer cells on one lymph node in my groin at less than .5mm. Surgery to remove mole & lymph node went well. Saw Dr. Postow after and a few others, all recommended no treatments since the lymph node was removed and had very few cells. Now I’m getting routine Derm/CT/MRI/PETs (all clean so far)
What’s changed is my genetic test has come back as CDKN2A+. So now aside from melanoma I have pancreatic cancer to worry about. However I’m a fairly healthy and young guy (35, 6’2, 210lbs) and probably won’t have to worry about the pancreatic stuff until later in life.
But with this new genetic discovery, will I constantly develop melanomas now? Should I avoid the sun like a vampire? Should I completely remove every mole on my body? (I have maybe 20 or so besides freckles, not many)
With CDKN2A+, did the road to living a cancer free life just get impossible?
interesting. I was diagnosed 3c in as much as there were melanoma in 4 lymph nodes. after resection is was prescribed nivo for a year, twice a month. cost insurance around $7000 a session. 6month scan …NED
and they still insist on finishing out the next 6 months.
am I missing something here? very few cells maybe?
I dunno. but 1 year of infusion is no walk in the park. and now with covid, it places me at high risk.
what does your doc say about being NED and your covid complication risks?mine suggests it would be deadly.
Being that the lymph node had just begun taking on cancer cells, I am guessing it didn’t have a chance to spread further? Dr. Postow’s exact words were “you’ve only dipped your toe into the waters of Stage 3 Melanoma”.. my following PET and CT were clean so I am guessing that’s why they’re suggesting I do the close monitoring as opposed to treatments. He said there is no data regarding my specific situation so they cannot outweigh the benefits of treatment over risks that come from immunotherapy. But I am wondering if this Gene test changes that equation.
Dr. Postow is one of my favorite oncologist to watch on video explaining melanoma and all the options and various choices melanoma patients have to make. If he is giving you advice then you are in great hands. I would not stop asking questions however be reassured that you are getting great advice.
The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.
The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.
The Melanoma Research Foundation (MRF) is leading the melanoma community to transform melanoma from one of the deadliest cancers to one of the most treatable through research. education and advocacy.
The Melanoma Research Foundation is a 501(c)(3) non-profit organization.
THE INFORMATION ON THIS WEBSITE IS FOR INFORMATION PURPOSES ONLY AND IS NOT A RECOMMENDATION OR ENDORSEMENT OF ANY DRUG, DEVICE OR TREATMENT OR THAT ANY PARTICULAR DRUG, DEVICE OR TREATMENT IS SAFE, APPROPRIATE OR EFFECTIVE FOR YOU. QUESTIONS REGARDING ANY DRUG, DEVICE OR TREATMENT SHOULD BE DIRECTED TO YOUR HEALTHCARE PROVIDER.