› Forums › General Melanoma Community › So many questions, so few answers…
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vp sf.
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- February 28, 2018 at 4:35 am
I have just found this forum, Have read quite a few of the postings here, and feel I have finally found people that have been in my shoes and might be able to shed some light on MM for me.
In July of last year, during my first physical in many years, the doctor noticed a lesion in the upper middle of my back. He biopsied it and informed me that I have malignant melanoma and was sending me to a surgeon at City of Hope. Three days later I met with the surgeon, who scheduled me for a pet scan, surgical removal of the lesion, which was found to be 1 mm thick, and a second lesion found on my lower back, at the waist, which was found to be in situ MM. he performed a lymphectomy in my right armpit and removed six lymph nodes which all showed negative. Unfortunately, the surgeon is great at what he does, but thoroughly lacks in the communication department. I have asked multiple times for any info or feedback to his findings, and all he would say is "You're okay" or "Don't worry". I never recieved "Facts".
Since then, I have been to 2 dermatologists, have had eight more nevi removed for being "dysplastic", and 1 Basal cell lesion removed. And to date, I still have not had a single professional explain what my cancer means to, or how it affects, me. "Come back in three months" is the most common statement I hear.
All the info I have has been parsed from the internet. But I know that each case is as individual as the person, and there are so many factors that affect it.
A big question that I need answered is what does it mean to have 2 lesions growing 10" away from each other? Is that bad? Is it worse, or the same as just one? What "stage" is my cancer? And about a million more questions.
I would truly appreciate any help or answers that anyone can give.Thank you and keep up the good fight.
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- February 28, 2018 at 2:14 pm
You've had two "primary" melanomas. That means you've had two independent and unrelated lesions both become melanoma. That's not the norm, the vast majority of warriors only have one. About 10% have more than one. If you have a lot of atypical looking moles, you are at higher risk to have more than one. The distance between them is not a factor. (I've had 3, one on each leg and one on my back).
Without seeing the actual pathology report, it is difficult to stage you. Probably stage 1b or 2a. Staging criteria changed again recently for stage, staging is based on more than just depth. Having multiple primaries really doesn't affect your staging – you essentially are staged twice but practically, you are the stage of your highest/worst primary. So the in situ – being stage 0 – is basically ignored and you will be whatever the stage of your other primary.
As for followup, being seen every 3 months is pretty standard. Some stage 1 individuals are seen every 6 months. But if you have a lot of moles, every 3 is probably good. Typically no other testing/scanning is done. If you can find a doc who does "mole mapping" or uses photographs to monitor you moles for change, that might eliminate some of the biopsies. Only remove things that are changing. Also, if you have new moles show up that also seem "ugly duckling" – they are candidates for removal. About 75% of melanomas show up on new lesions.
Use the search feature here, there are thousands of posts related to early stage individuals here. Please understand that most early stage people move on after a time. If they aren't new/scared and actively seeking info, there's not much reason to stick around.
Good luck!
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- February 28, 2018 at 3:09 pm
Janner basically summed up exactly what I was going to tell you. I would say you are in very good shape in terms of this disease and you are strictly in a relax and monitor stage. So, it's okay to take a deep breathe and basically go on with your normal day to day routine. I'm not a doctor but it sure sounds like currently you are NED (no evidence of disease). Your doc got you all cleared up and now it's time to work on losing any anxiety you may have been feeling.
It's really unfortunate that some of these doctor's make so much money that they don't think they need to take the time to ensure the patient is at ease with themselves and understands what's ahead of them. So like Janner says, you need to stay up on your scans. Get them regularly but also keep a look out on your own and if you have a spouse, then please have them "keep an eye out" as well. They don't need to be paranoid about it but it's good to occasionally glance at your back while your getting ready in the morning or the other spaces that are hard to see. Remember your ABC's of melanoma while you look at any that might seem new or different looking.
After a few clear scans where he isn't taking any more moles for biopsy, I would ask about moving your scans to every 6 months. You should then stay on 6 month scans until you hit your 5 year mark of being free and clear. After the 5 year mark, they say it's okay to move to yearly scans but continue to self monitor. I would also expect them to be doing blood work up on you at each scan as well. Maybe not every 3 months but definitely every 6 months to watch for any changes in levels etc, that might help catch some anomoly early.
Unfortunately, at least where I live, CAT/PET scans are too expensive to just get as a preventative which is a shame because that would have allowed me to catch mine a lot earlier but I'm at a good stage in my battle so it doesn't do any good to moan about it now lol.
Anyway, hopefully this helps a little and remember to breathe. It's going to be okay and even when it's not there are more options then you might think. So just enjoy your life one day at a time, the only change is to pay more attention to your skin moving forward.
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- February 28, 2018 at 4:45 pm
Just for further clarification on stage 1. Blood work isn't standard for stage I – there is only so much to be learned. Few markers that are really melanoma specific even at stage IV. There is technology in the works for using blood tests to catch circulating melanoma cells, but that's not quite here yet. Some docs do blood work for stage I, but most don't. Scans like PET/CT definitely are not standard for stage 1. In fact, unless there are symptoms – insurance is unlikely to approve them. They have so much radiation (think 600 x-rays to one CT and PET has more) – that it isn't justified for lesions that are low risk. Remember, you have to have a tumor of a certain size to show up on these scans. Scans don't catch new primaries or melanoma cells. The standard for stage 1 is 3-6 month body exams – visual examinations. If you can convince your doctor to do more, that's up to you. But for most stage I individuals, a skin check is what you have for stage 1.
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- March 2, 2018 at 5:25 am
Sorry to hear that your doctor wasn't as communicative as you needed him to be. The people on this board are generous with their knowledge, but also remember that under HIPAA you have a right to your medical information: test results, copies of scans, biopsy reports, etc. You can request them from City of Hope. CofH also has a Department of Supportive Care with people who can take the time and talk to you and answer your questions. Their slogan is "the miracle of science with soul." Sounds like you need your information, and a little attention to your soul. Best of luck. V.
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