Stage 1B Spreading?
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Hello, It’s been a while since ive posted on here. I was dx with stage 1b in 2012 at the age of 23. It was a thin melanoma but i did have a mitotic rate of 1 I believe (which is why they dx stage 1b) no ulceration. I had wle and slb all came back clear. I was told I would need to watch out for recurrence for the first 2 years and I had a lot of moles removed around that time. Everything came back benign except one came back slightly abnormal so they went back and did a small excision to make sure they got it all. I was seeing a dermatologist for skin cancer screenings but it seemed pointless, he didn’t do any mole mapping or photography anything like that he just looked me over. I stopped going a few years back and ive just been keeping an eye on my skin myself and having my pcp remove anything suspicious, havent had any for awhile. I’m obviously very careful in the sun now and I’m very protective of my children in the sun. Anyway, my dr is sending me to an endocrinologist for possible thyroid nodule/lymph node biopsy. He’s been keeping an eye on it via annual ultrasounds for the last 3 years and t’s grown a little and I guess there are lymph nodes in my neck that are enlarged and were enlarged on my last scan too. The whole situation is kinda stirring up some old emotions about my melanoma.. Please tell me my melanoma did not somehow spread to my thyroid. I know chances are really slim that its even cancerous and if it is its likely thyroid cancer, not melanoma, but I cant help but worry. And now I find myself worrying in general that someday I’m going to collapse and theyre going to find something in my brain or somewhere else that turns out to be melanoma. I cant leave my husband alone with our three kids, they need me. I guess I’m just looking for advice/reassurance about the whole situation, maybe something I can do to make myself feel better? Maybe start seeing a dermatologist again? Can I ask for a full body MRI or PET scan? I know im being paranoid but I just want to feel less worried! Thanks I can understand your anxiety. Once you’ve had melanoma in any stage you worry about a comeback. This sounds totally unrelated to the melanoma. Thyroid issues are pretty common and I would see a specialist about it. From most literature I have seen, thyroid problems are remedied fairly easily. See the specialist and try not to worry ahead of time. It is doubtful though that this is related to melanoma. Let us know how things go.. Here is a good safe place to learn more about the thyroid: https://medlineplus.gov/thyroiddiseases.html Good post Catherine. Icegurl470 I am almost at my 1 year mark of my diagnosed stage1b (sounds very similar to yours .57 with mitotic rate of 2). However, after reviewing even more research, in 2018 my melanoma would have been re-classed as a 1a- as mitotic rate is no longer used for staging in thin melanomas. That may also give you a little more reassurance……all the best in your tests.
Actually, the top docs tell me they will still be using mitotic rate in assessing a person’s prognosis. So don’t count it out yet. Interesting. I was under the impression it was not of prognostic value for thin melanoma’s- rather later staging. Can you find out more details? I’ve spoken to the experts on our board and they still believe mitotic rate is important for prognostic indicators, whether it be thin or thick. Why AJCC dropped it no one knows, but they and NCCN tend to have guidelines that aren’t evidence based. Normally, my understanding is that AJCC is evidence based. Catherine is it possible to find out the reason mitotic rate was removed through one of your network of experts, and reasons why others still consider it valuable? I would be interested in posing this question should you have an upcoming expert Q&A.
No one can pinpoint why AJCC dropped mitotic value. The university of PA dermatology department still reports it and feels it is important. And they are pioneers in melanoma with Wallace Clark being their mentor..(the Clark Levels are no longer used however for prognostic indicators) It’s funny because I remember when I was diagnosed there was a lot of discussion about this too. I was dx by my local pcp no mention of stage or mitotic rate, just depth. I opted to have a sample sent to Boston to confirm and they confirmed and said that no SLNB was required but the dr actually went to a conference which discussed the Mitotic level and the fact that cancer seems to spread faster in young people and ended up calling me back and saying he was going to stage it 1B and recommend SNLB if I wanted it and we decided to do the biopsy just to be sure, so it must have been right around the time they started looking at this. I dont see the endocrinologist until June 1st, so still waiting. Im kinda hoping they will biopsy the lymph nodes and nodule just to rule out melanoma or thyroid cancer, since the lymph nodes have been swollen for a year I dont think it’s from infection, but it will probably just be another u/s in a year or 6 months to keep an eye on it kinda thing I would like to see the studies showing cancer/melanoma grows faster in young people vs. older people. I’ve not seen evidence of this in any study. I will check my sources. Medicine isn’t perfect and exact at times but large studies can normally be trusted. What institution in Boston did this come from? I had my 1 year oncologist followup last week. I asked them about my situation (.57 mitotic rate 2 no ulceration) and AJCC and mitotic rate. They said for thin melanomas like mine it was all about depth. So I would be very interested to find a journal article about mitotic rate for thin melanomas, if anyone can provide references…? Depth is the number one prognostic indicator, however, many melanoma experts believe mitotic rate is an important variable since it is an indicator of the cells dividing. Coupled together it can make you at higher risk. For now it is a subject of controversy with the AJCC discarding mitotic as important.
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