Just yesterday, (2/7/20) I received a call from the VA that my biopsy came back positive for melanoma. Mind you this is a mole that was deemed “normal” by two different dermatologists at the VA. Yes I know what you’re all thinking as am I, the VA has a long history of letting vets down.
- February 8, 2020 at 7:02 pm
About me. 34yr old white male, 6’2, 210lbs, fair skin, pinnacle of health. 120/65 BP all of the time, good cholesterol, always great blood results, not exactly the poster child for cancer. But as I am learning, this cancer can affect anyone.
I first noticed this new mole in mid 2018 on the back of my right calf. Started out as a typical round mole, nothing out of the ordinary. Honestly wasn’t even sure (until I’ve recently checked yearly beach pictures) if it was a mole I’ve always had or something new. Until recently last year I started to realize it was growing (not exponentially) and raising. I decided to have it checked by the dermatologist. The doc said it looked fine after using the magnifying eye piece they use. Then after a year of having it I decided to go back and have it checked again and ask for them to remove it since it was still growing. It grew to the width of a tiny bit smaller than a pencil eraser head and maybe way raised 1/3 of the height of an eraser head. The next dermatologist (seemingly good doctor, not lazy, smart, young) said the same thing. “Looks normal”. But I requested it be removed anyways because it was annoying to know it’ was there. Now fast forward to yesterday and I am completely lost in a world of “what if” & “what’s next”. I of course have done the googling and it looks exactly like a Nodular Melanoma. So that’s not exactly helping my anxiety of this. (Mind you I’m a former Marine, current Law Enforcement, and this the most scared I’ve ever been.
I have a follow up with the surgeon on Monday probably about cutting out the margins around it. I have so many questions, so many worries, and I can’t stop thinking about how life is gonna be if the news is worse than expected…
So I am reaching out….In the only way I know how to because I’m generally the man who doesn’t ask for directions or call for a professional. Stubborn and resilient, but right now scared to death.
What should I ask on Monday?
What should I demand?
Should I bring my pathology reports to someone else regardless of this doctors opinion?
Anything else I should be doing?
Thank you all for your consideration into lending some advice.
What did the pathology report say, for example depth, ulcerated or not etc. ?
- February 8, 2020 at 7:08 pm
I am going to give you two links to the basic fact of staging so you can do some reading to better understand what might come next, with that in mind the depth of biopsy and if it is ulcerated or not will be important factors to find out to better understand what comes next. If it is thin, it could be in situ and then you are done with no worries, if it is deep and ulcerated then they will want to do some more steps (which usually involves sentinal nodes biopsy (SNLB) to see if melanoma has spread to local lymph nodes) to be able to better stage your situation. https://www.aimatmelanoma.org/stages-of-melanoma/ https://melanoma.org/patients-caregivers/cutaneous-melanoma/diagnosis-cutaneous/
- February 8, 2020 at 7:44 pm
Now if you digest the basic facts from the first post and you want to totally Geek out on melanoma information ( not recommended ) here are two links to more detailed facts and might require a stiff drink to help absorb but remember you are at the start of the journey and it could be short with little follow up or it could require more steps and procedures, but at this point without path report it is impossible to guess. Good luck!!! Ed https://cancerstaging.org/CSE/Physician/Documents/Melanoma%202.2.18.pdf https://www.youtube.com/watch?v=2wmeyNjFKQw
- February 8, 2020 at 7:49 pm
Read and watched everything in those links. Thank you for sending those. They do clear up some things about the melanoma I had not previously known before. However I have another question. Does nodular melanoma describe the growth above or below the dermis? As in the does the height of the mole that I can visually see define if it as nodular or not? Or is nodular defined by the growth below what can be seen? When I googled nodular melanomas the results looked like what I had shaved off, but I’m thinking nodular doesn’t mean the appearance on the outside.
- February 8, 2020 at 9:13 pm
Also, can ulcerated be seen with the viewing tool the dermatologist uses or is that only determined under microscopes? My mole was not bleeding, itching, cracked, or anything.
Thanks again for all of your help.
JudiAUParticipantI am not sure that you should classify this as a VA problem or even a dermatologist problem. Melanomas are sometimes very obvious and sometimes very subtle or not obvious at all. People with all types of insurance are regularly told exactly the same thing as you. Often continued growth is the only tip off.
- February 8, 2020 at 8:11 pm
Generally speaking, diagnosed melanomas get a second, wider removal to make sure all cells are removed and many times the nearest lymph node is checked. If they find additional cancer cells, then CT/PET/brain MRI are called for.
I didn’t mean to sound like was pointing fingers. It is ultimately my body trying to kill me, not someone else. I was just raising the fact that the VA doesn’t exactly have a great track record for staffing great doctors and also has a history of screwing up veterans information/paperwork/diagnosis’, etc. I know from experience. However with that said the VA hospital I go to is ok. I do understand I could have had the same results by seeing any private doctor.
- February 8, 2020 at 9:16 pm
Wait until you get the pathology report. By them calling back saying “Melanoma” could mean different things. If its a “Melanoma in Situ” or “severely atypical but lets call it Melanoma” Means the same thing and is just on the top surface. You get extra skin removed and will likely never deal with it again (cured for life). Even thin Melanoma’s and slightly deeper invasive MM can be cured by the procedure. Wait and see what the path reports say – ulceration and mitosis are important aspects.
- February 8, 2020 at 9:17 pm
Thank you for that. Gives me something to hope for and look forward to.
- February 8, 2020 at 9:35 pm
The doctor did say on the the phone that he was surprised it came back as a melanoma and that several pathologists looked at it. Do think this is typical for several to look at it? My hope is that one or two couldn’t quite determine, maybe it was faint evidence they were trying to confirm?
It is typical for two to look at it (especially when not a clear case) There are so many people with atypical lesions and just never know it. Being your own advocate is what is best. There is a borderline which many diagnosis fall between. Its in the best interest of the pathologist and/or surgeon to treat it as “if it were” melanoma in those cases. It covers you against a possibility it could become invasive (or more so) and them for lawsuits. As mentioned above – if you have a patient portal you can usually get access to the pathology report. Caution though not to read too much into it and let others help you interpret the results.
- February 8, 2020 at 11:03 pm
I had a small dark spot removed over a year ago. It was like 1 or 2mm in width. The Derm told me it was benign but they wanted to take more out. The MOHs surgeon said it was Melanoma in Situ – but so he could treat it as such. The practice manager then told me he would just call it a “neoplasm of uncertain behaviour” as it was somewhere between a MIS and Atypical but nobody could decide. It was better to err on that side of caution and take the larger margin and never deal with it again.
casagraysonParticipantDoes the VA have a patient portal where you can access your test results? That would be very helpful if they do.
- February 8, 2020 at 10:35 pm
As you sweat out staging prognosis there is every reason to believe it is an in situ melanoma and that’s that.
- February 9, 2020 at 9:31 pm
If on the other hand you are found at another stage, then you will feel that you want it treated immediately. It took me 2-1/2 months from diagnosis to first immunotherapy dose.
Every professional never cautioned me that time was of the essence. In fact that opinion seems quite counter-intutitive and I did not believe them. When ever it looked like some delay or other was on the horizon i made sure EVERYONE knew I wanted it treated fast and fully. The squeaky wheel and all that. I even went to the infusion center to do a little pre-infusion lobbying.
If it felt like there was something off or slow or otherwise bureaucratic i made sure I was on top of things. That included me on the table, ready to scan, calling the Derm to make sure the tech was in fact scanning the right mole. In pre-op I half jokingly kid. but i told everyone down to the janitor, the mole is on the left, not the right. Circle it with a marks a lot. Remove the correct one please. Probably entirely unnecessary but its my life, so I get to be an ass if necessary.
one thing to point out and others have, your Oncologist may not know any more about melanoma than you do. So if treatement is required get the VA’s best melanoma specialist. Same with surgeons there are oncology surgeons who specialize in ,well, oncological surgery. Mine was experienced and knowledgeable and pretty good at telling me what was what. He is likely a first stop if you are staged at 3 or more.
ah ha ,I am already talking like you know what stages mean to your care, right? There is definitely a learning curve, including the jargon, and you may have to make critical decisions about what procedures and treatments you chose. Perhaps sooner than you care. too.
here’s to a short stint at the cancer corner. go ‘in situ’
heh Anon, can you elaborate on that and rapid growth
- February 10, 2020 at 12:15 pm
I got one mole biopsied, melanoma in situ, and derm cut it out. I went back in 3 months and he found another mole , biopsied and it was Stage 3. So It seems the 2nd mole went from 0 to deadly in less than three months.
the first mole was biopsied and excised. melanoma in situ. the 2nd mole was only inches away but wasn’t ‘dsicovered’ until a follow up 3 months later.. could it have been overlooked? just so I understand , you are saying a mole becomes cancerous and grows for only 3 weeks?
- February 10, 2020 at 7:58 pm
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