Stage 1b

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Amn8
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Joined: Sun Jul 29, 2018 10:24 pm
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Stage 1b

Post by Amn8 » Mon Jul 30, 2018 10:44 pm

Hello all. Newly diagnosed 1b here looking to compare and obtain info. First a background, 46 yr old female, strawberry blonde, blue eyed, fair complection (can we say poster child??). Melanoma found in existing mole on left calf, .44mm, 0 mitotic rate, focal ulceration, no regression. Wide excission performed by surgical dermatologist...no SLNB per derm and oncologist. Upon my continued research, which educated me well but brought on much anxiety, I sought a second opinion due to the ulceration. The second onc stated he would have performed a SLNB had he done the excission. However he assured me that was his opinion, that many would be of the same opinion as my derm and 1st onc. 1b is apparently a gray area. He suggested I get an ultrasound of my lymph nodes behind my knee and groin every 3 months for the next 2 years. How different opinions Drs can have? The 1st onc said..come back to see me if you have a recurrence or new primary. This one wants to follow me for a while in addition to my derm cks which I'm having every 2weeks but will soon start every 3 months.

Since my excission on 5/15, I have had 31 punch biopsies, 5 complete mole excissions(2 dysplastic/3 with potential future issue). I have been a 'work in progress' (many moles and freckles) trying to acquire a somewhat clean slate. I go for my lymph node ultrasound Wednesday. It may or may not be above protocol, but it helps with the anxiety knowing I'm dong something to check the inside too. Would any other 1bs like to share their treatment and follow up...especially if your lesion was ulcerated.

Next, the onc asked if I would be interested in participating in Decision DX. This can give me some peace of mind or rev up my anxiety which I finally have under control, The one thing that MIGHT benefit me is that if my results come back high risk for metastizing, my insurance MIGHT pay for a yearly PET scan that they for sure won't at this time being a 1b. Has anyone participated in this test?? Has anyone seen any statistical information on how much ulceration increases your risk of metastisizing? I only found 1 article that stated there was no evidence that ulceration increased metastisizing risk in tumors less that .75 mm.

Lastly, for someone with many freckles and moles ...and the beginnings of age spots...do pictures really help? If so, do you recommend a professional or do you take them yourself? I feel I would have to take 100 pics per month.

I know we stage 1s are blessed to have caught this early...estimated 95% cure rate with excission. Never knew just how large 5% could look until I was on the inside!!!

Thank you for your time and comments.

point30
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Re: Stage 1b

Post by point30 » Thu Sep 20, 2018 12:59 pm

Sorry for the late reply. I too was a 1b (.57 mitotic rate 2 no ulceration detected). I know exactly how you feel.

I wrote a few posts ago about why the don't do SLNB for our cases as too often then not it would show false negatives or inconclusive results. You are right......we are a grey area.

95% is a great number but yes, the 5% is there, and it's terrifying even for me who is over a year and a half since my initial removal. So there are many of us out there.

Hope to hear from you again soon, and again apologies for not responding right away.

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