Newly Diagnosed. Looking for Answers

Welcome, Richard 24! You have great questions here, and as a person who had a 1A diagnosis two years ago (0.3), I think I can answer your questions.

In terms of survival rate, for someone with 1A, there really isn’t much difference between the 5- and 10-year survival rates; they are so high, fortunately, one can almost consider them “cures” although you still will want to have a full body check by a dermatologist after your wide local excision (WLE), when they will make sure enough tissue has been removed around the melanoma that nothing is left to worry about. The routine I’ve had and have seen here on this board is a check every 3 months for 2-3 years and then every 6 months up until five years, after which you can go to once a year, which most people should do anyway.

In terms of beach vacations — go whenever you want. Just wear and reapply that sunscreen and hat. Enjoy yourself, but keep yourself from getting sunburns. Most of the time, the damage that causes melanoma is from our earlier years in the sun. Going out in the sun is unlikely to affect a recurrence. IMHO, keeping your immune system healthy and doing those check is the most important part of preventing further problems or having a recurrance. As many say on here — live your life. Enjoy yourself. It took me a long time to not stress, but I’m pretty much at that point.

In terms of Kaiser — I’m not a fan for a variety of reasons, including Melanoma Mike’s experience, but I think since you’ve just had 1A (or even at the 2 level), I wouldn’t worry about that. Just make sure your dermatologist takes you seriously. If you feel like they aren’t, change your doctor.

So, welcome to the “club” but know that for the most part you never see too many 1As on this board after they’ve had their WLE and gotten over that initial fear. I personally am on here because I teach science writing as write fiction and find all of this new information about the immune system fascinating and learn more here than I could anywhere else. I also feel like I want to know how things are going for people on the board as I’ve read their stories. Good luck with your WLE, and if you have any questions or concerns, please do post!

Erika

I am sorry that you are dealing with the anxiety and uncertainty that can come with finding out you are dealing with melanoma! I had melanoma removed in March of this year and it was also diagnosed as 1A (.5mm, 0 mitoses and no ulceration). I still worry often about if this will impact me later in life but I am really trying to move past it and live life! I know worrying about something that has a 95% chance of NOT happening is not good for my health either. In terms of going on vacations, to the beach, etc… My family and I had a beach vacation planned for June 2019 and once I found out about the melanoma I was very anxious on how it would go and how I would deal with being at the beach. I have 2 little boys and knew they would want to be in the pool and play at the beach! I was diligent in my sunscreen application, constantly wore a hat and sat under the umbrella or a shaded area when possible. However, I am not going to avoid enjoying precious time with my kids- so if I was in the sun I was not obsessing about it. When I got home from vacation I really had no tan and that was JUST FINE with me! I felt relief knowing I enjoyed the vacation while still being smart about the sun.
I still worry too and hopefully we are fortunate and remain in the group who do not have to deal with melanoma again 🙂 best wishes to you!

Hi Richard,

I’m not aware of any data for survival rates beyond 10 years. Don’t pay too much attention to statistics, good or bad. Everyone is different. The important thing, as others have noted, is to see a dermatologist for regular FULL-BODY exams. Try to find a dermatologist who is knowledgeable and has experience with melanoma. I was surprised, but most don’t seem that knowledgeable to me. I’ve had two dermatologists since my diagnosis and neither seemed to know much beyond the basic ABCDEs, which everyone should know. So, find yourself a good dermatologist, and also learn how to do a self-exam. You’re looking not just for the ABCDEs, but also check for any swelling around the original site. This could mean lymph node involvement, making you stage three, so it’s important to catch that early. It’s helpful to have someone else to check the areas you can’t see, such as your back and your scalp.

As for your other question, I would not fear the sun, but the precautions you mentioned are all sensible.

Good luck,

-Rich

Hello Richard24, and WELCOME to our humble abode! As our brothers & sisters already expressed, don’t stress on the 1a or any other staging OSR (Overall Survival) rates, ya, recorded ” statistics” are nice, and can be helpful (or scary) but not all current stats are necessarily up to date with all the new Melanoma meds out now!! Keytruda, Yervoy, Opdivo, TIL, or any other “Injectables” etc. to name a few, have begun to shatter previous Overall Survival Rates!! Like I’ve said, it’s a GREAT time to have Melanoma!…I to have Kaiser & like a sister mentioned, I recently had a fight to obtain an Outside Referral to an “actuallo” Melanoma Specialist, I was denied AND I met the criteria!! (My treatment & surgery’s where stopped due to disease progression) but, in “their” eyes there’s still an option for treatment with an oncologist 85 miles away from me in Riverside (here in Calif. I’m in Van Nuys) with Dr. Jang, he’s experienced in Melanoma but NOT a specialist. So, I’m hopeful but not happy with my referral being denied. I hear your in SoCal? Where? We have a few MRF peeps from SoCal…
Now, with all that being said, the “otherside” of Kaiser, I was diagnosed in 2008 and I’m still here bro! 7 surgery’s, I did 3 different Immunal Therapies and I’m still alive and kickin’! Ya, I may be stage 4 now from stage 3b since first diagnosis but, I’m still here, it’s NOT their fault my Melanoma didn’t respond to these Topline meds! My Mel Monsters just so happened to be tough as hell and I just need Heavier Weaponry that’s all! ..Clinical Trials, Proleukin IL-2 therapy, TIL etc. is still there for me and I’m ready, it’s time for some Inpatient treatment, really get in there and wipe this CRAP out! I see that Dr Jang guy the 15th (Aug) for a consult so, I’ll post my findings…don’t stress man, you’ll learn not to, your at a GREAT staging so, stay PROACTIVE! Get buttass Naked every month with a hand held mirror (or help with the wife haha) and spread those cheeks, look under your feet, cracks & crevices, Armpits, fingernails, scalp!. “feel” your skin, don’t just look for Moles, rub your body over, feel for firm abnormalities (knot like balls) “under” the skin. Of course your scans! Your Derm Doc to! You’ll cool down after awhile….stick with us here at MRF!