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April 15, 2013 at 11:21 pm #21192
I was diagnosed 6 weeks ago with melanoma. 1 on my leg was malignant melanoma…it was .26 , most was in-situ, but a little bit invasive. 1 on my arm was a pre-melanoma. I was scheduled for surgery this past Tuesday, and did have it, but before I had it, I went back to the Derm for another spot that didn’t look right….2 MORE melanomas, in-situ’s . So, this past Tuesday, I had general anesthesia to have all four of them removed, the one on the leg had to be cut deep, to the muscle fascia . I went back to day and have CLEAR margins now. My concerns is, why all of a sudden do I have four issues within weeks , with melanoma? Also, the derm wants me to come back in two weeks, she thinks there could be more. Why? Is this normal? And, do I need to worry that it will show up somewhere else? Will I keep getting them? And last but not least, she has given me the option to go have a PET scan, at first I said “no” that I was comfortable with where I am, but the more I think about it, the more I feel the need, if not just for my own fear, to have the scan done.
I am alone on this. I am afraid, and very sad….don’t know what to expect . Thank youApril 16, 2013 at 1:07 am #60084cohanjaParticipant
Regarding the scan, I don’t think it would be clinically called for nor standard protocol for in-situ’s or for the .26 microinvasive (unless maybe there was extensive regression or something).April 16, 2013 at 11:39 am #60085 You need another opinion from a center of melanoma excellence! It sounds like they are going way overboard for such low risk lesions. I know it is hard to mobilize when you are scared but I would be concerned that even their pathology is incorrect. You need second opinions on all slides that can easily be shipped to an expert dermatopathologist. Cutting so deep for a thin melanoma is just not prudent in my opinion. Please let us help you find another opinion on this. It also does seem like you are being overdiagnosed. I hate to mention this, but there is great profit in this country to doing unnecessary procedures. We are here to support you and provide guidance. And scans certainly would not be warranted.April 16, 2013 at 12:19 pm #60086 !April 16, 2013 at 6:26 pm #60087 I would get another opinin at either Mayo Clinic in Jacksonville or Moffitt in Tampa. Miami has a few centers, but not known for melanoma. A dermatopathologist needs to read your slides.April 27, 2013 at 12:19 am #60088 Well, going to moffitt up in Tampa. Had 4 biopsies last week, all of which were pre cancers, one is a melanoma,again. Very frustrated, and majorly down. But good news is, still thin, and getting third opinion. That is 3 melanomas in 6 weeks. Anyone else have multiples?April 27, 2013 at 12:41 am #60089 Does anyone know what displasia syndrome?April 29, 2013 at 5:45 pm #60090Lisa PParticipant Could you mean dysplastic nevi syndrome? If so, I have that. It’s where you make a bunch of “abnormal” moles. Most of mine that have been biopsied have come back as “moderately dysplastic” which has caused my doc to do WLEs to remove them. I also had three melanomas. One insitu and two that were larter (.23mm and .50mm). Anyway, it seems that abormal is my normal. Catherine’s husband has this syndrome, too, I believe, and has lived with it for a very long time. While the likelihood of dysplastic moles morphing into melanoma is greater than normal moles doing the same, there is no evidence that, in fact, they will turn. Holler if you have questions I can help with, and hang in there!!! LisaMay 1, 2013 at 2:20 pm #60091 Thank you ,Lisa. That was good info, I had the word wrong to begin with, so you cleared it up for me.
The last one is on my back, .33, going to Moffitt today and I know they will put my mind at ease…thank you again.May 1, 2013 at 2:34 pm #60092Lisa PParticipant
Let me know how it goes, ok? Sending good thoughts.. LisaMay 1, 2013 at 6:15 pm #60093 My husband has dysplastic nevi syndrome and it is best to be followed with photography. He has lots of funny looking moles and it drives me crazy. But he is followed with photography, whole body photos to look for change. Have you done this?May 2, 2013 at 2:26 am #60094 No, do you mean taking pictures of my body? Moles? Thank you Catherine….and Lisa, thank you …..moffitt is looking at my slides then will talk about the next step is. Most likely having excision on back in two weeks. Will keep you posted.May 18, 2013 at 5:29 pm #60095 Had my excision done yesterday at moffitt. They did do their own path on the slides and indeed they were correct. 2 pre mels and 3 melanomas in a 3 month span. They ard still thin, .26, .28 and the latest one is .33 . I feel good abut it, but then at times I am still shaking my head as to why 5 issues all at the same time. Moffitt also took 3 moles yesterday to have checked.
Didn’t really get a clear answer as to whether or not dispalstic nevi syndrome is involved or not. My uncle died of melanoma 3 years ago and his daughter had one recently . My adult children are covered in moles so very concerned for them……and last but not least, my moms 2 out of 3 uncles, passed away from skin cancer.( I know they have come along way since then, 15 years) I just can’t help but wonder what is going on.
I had a client tell me the FREAKIN DAY BEFORE my surgery about her friend who had a Mel on her back, had it removed and was fine. Tw years later, she had a hard lump under her arm, no mole, no marks, just a lump, it was Mel again, and too late! Really? She. Had to tell me this the day before I to under the knife, AGAIN? Now, I realize I don’t know the circumstances, how deep, how advanced, was it in her lymph nodes, but sure scare the daylights out of me…..I guess I am feeling afraid, what do I look for, will it happen again, will ingest to have a long healthy life…and so on. I am a glass half filled type of person, love life, and happiness is my own choice, but struggling at the moment, this moment anyways…lol.
Anyone else have multiples at the same time?May 18, 2013 at 9:29 pm #60096
During my surgery, skin graft for my melanoma, the nurse holding my hand said that the hospital has just lost a doctor to melanoma. It was so helpful!! I think you definitely need to line up your family and go to a pigemented lesion clinic where they can study all of you. My husband’s family only has this sporadically, but if your children are covered with moles, they need to be followed carefully.May 19, 2013 at 12:42 am #60097 Thank you Catherine……what is it with people thinking they need to tell you something bad? Getting my daughter to my doctor ASAP.
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