› Forums › General Melanoma Community › melanoma in situ ongoing
- This topic has 10 replies, 4 voices, and was last updated 13 years, 6 months ago by
Brandi.
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- September 28, 2010 at 2:41 am
Hi there,
Hi there,
Some of you might remember me. I had a mole removed from my left upper arm in May of this year which was diagnosed as melnaoma in situ and went and had it further excised in June 2010. I had a Wbig conversation with the plastic surgeon where I asked him to feel free to take more rather than less to get it all. he said it wasn't necessary and would only nee to take a small amount, that you wouldn't want to take too much unnecessarily. When the patho results came back, the plastic surgeon said that was all that was needed but when I insisted I get a copy of my pathology report it said there were still atypical melanocytes at the margins and the pathologist recommended a further excision. I insisted on the further excsion, which happened in August, with the plastic surgeon telling me it was unnecessary, we would get the same result because of my sun-damaged skin etc. Well, what do you know, but it came back again with atypical melanocytes on the margin and the pathologist recommending a punch biopsy an inch or so away from the site. The idea behind this would be that if the sample still came back as atypical we could all assume that it really did mean my skin was just damaged all over. Anyway, the plastic surgeon and the dermatologist both said to stop worrying and that nothing more should be done.
I spoke to my primary care physician and said I would like a second opinion, what did she think and she was concerned abut how the patho report was worded , but wasn't sure where to send me for a second opinion, so I came on here and had some helpful responses. I deceided to seek a 2nd opinion at Sloan Kettering in NYC and have to say, I am amazed at how efficient they are. I wait days and sometimes weeks to hear back from my primary and months for an appointment with the doctor up here in Central New York. I had an appointment within 10 days and had to arrange to get my slides sent from Cleveland Skin Pathology Lab to SKCC. Well, it took Cleveland SPL 6 days to even get my slides into the mail so when I saw the doctor in NYC she hadn't heard back from the SKCC pathologist yet, but she commented that my excision scar was small and she would have taken more. We looked at the original Patho report from Cleveland and she said she wasn't really sure what they meant but she wanted to find out the degree of atypia and if it was severe she would recommend a further re-excision. She called me a couple of days later to say that the pathologist actually says it is still melanoma in situ on the margins. Now, I know melanoma in situ is very treatable, but it feels pretty odd to have been told it's definitely all gone, and now have somone else look at the slides and say it is still there. So, I have had 3 excisions so far and now about to undergo a 4th and am hoping they manage to get it all this time.
Has anyone else had experience with such varied diagnoses? Of course, I am finding a new surgeon to do the next excision and will insist on having the slides read at SKCC as well as somewhere else (not Cleveland).
Also, does anyone have any advise for me?
Thanks, Jennifer
- Replies
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- September 29, 2010 at 12:18 am
Can you have the next excision done at Sloan Kettering? It seems under the circumstances that may be your safest course of action.
Good luck with everything!
ellen – dad's daughter
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- September 29, 2010 at 12:18 am
Can you have the next excision done at Sloan Kettering? It seems under the circumstances that may be your safest course of action.
Good luck with everything!
ellen – dad's daughter
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- September 29, 2010 at 11:05 pm
Jennifer,
I am so sorry to hear about all of this. I am in the medical field and I will tell you some of these docs agitate the daylights out of me! I always tell my patients to do all the research that they can and get it from evidence based studies not just a google search. I realize that there are not studies out there for every diagnosis that comes up but… An informed patient is an empowered patient. Docs get really agitated with me because I go into their offices knowing what the guidelines and recommendations are and I question anything they throw at me that I don't feel makes sense. I am glad that you found a second opinion and it sounds as if you are in good hands. I would definately follow the plan you have laid out as far as not going back to the previous MD and having your slides read at a different clinic. I know your frustration and I can empathize with you. I am sorry you were subjected to this. When I initially found out my lesions came back as melanoma I was wondering what to do. I sat myself down and I started looking at medical journals and researching studies, data and stats. Doctors tell you not to do this but my philosophy is if you look in the right places there is no harm in educating yourself. I went to see two different doctors and neither one could tell me anything different than I already knew going in the door. I asked them questions that they admitted most patients do not know to ask, I made them give me rationales for treatment and statistics. I even went so far as to tell them what the guidelines and recommendations are. I think every patient should be armed with knowledge about their disease process. I'm sorry, I am on my soapbox but I will tell you nothing agitates me more than a healthcare provider who does not educate and who does not explain what they are doing. If your docs were unsure of your dx they should have told you and they should have consulted their colleagues and got second opinions themselves.
I hope this all works out for you. I wish you the best.
Brandi
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- September 30, 2010 at 12:13 am
Thanks for all your encouragement and support. I will probably not go back to Sloan Kettering for the surgery because it will be out of network and very expensive and it is also 4.5 hours awat from home. I sopke to the wonderful specailist I saw there, Dr Charlotte Ariyan and she also felt it wouldn't be necessary as it isn't really a complicated surgery. My primary has referred me to a new dermatologist and I met with him today. we spoke for over an hour and I felt in very safe hands, felt really listened to and respected for my tenacity in seeking the best care and folowing my intuition, rather than dismissed and condescended to. The new derm is going to hook me up with another plastic surgeon and the plan is to finally take sufficient margins to excise all the melanoma. I have already asked where the slides will be read and have insisted I get a sexond read from the Sloan Kettering pathologists. I am not looking forward to another cut, but hopefully it will be my last!
That said, I do understand that pathologists have different opinions about melanoma and that is very scary. I also understand that doctors will have different opinions and that they may not agree with their patients either, but ultimately they might better practice some humility and remember that they are, after all, in the service industry. I don't think my plastic surgeon was ever unsure of the diagnosis. He made up his mind before he even cut me the first time that there would be atypical melanocytes and was too arrogant to consider another opinion, especially mine.
Brandi, I really appreciate hearing your wisdom from the other side!
Wish me luck and I hope all works out well for all of you too,
Jennifer
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- September 30, 2010 at 12:13 am
Thanks for all your encouragement and support. I will probably not go back to Sloan Kettering for the surgery because it will be out of network and very expensive and it is also 4.5 hours awat from home. I sopke to the wonderful specailist I saw there, Dr Charlotte Ariyan and she also felt it wouldn't be necessary as it isn't really a complicated surgery. My primary has referred me to a new dermatologist and I met with him today. we spoke for over an hour and I felt in very safe hands, felt really listened to and respected for my tenacity in seeking the best care and folowing my intuition, rather than dismissed and condescended to. The new derm is going to hook me up with another plastic surgeon and the plan is to finally take sufficient margins to excise all the melanoma. I have already asked where the slides will be read and have insisted I get a sexond read from the Sloan Kettering pathologists. I am not looking forward to another cut, but hopefully it will be my last!
That said, I do understand that pathologists have different opinions about melanoma and that is very scary. I also understand that doctors will have different opinions and that they may not agree with their patients either, but ultimately they might better practice some humility and remember that they are, after all, in the service industry. I don't think my plastic surgeon was ever unsure of the diagnosis. He made up his mind before he even cut me the first time that there would be atypical melanocytes and was too arrogant to consider another opinion, especially mine.
Brandi, I really appreciate hearing your wisdom from the other side!
Wish me luck and I hope all works out well for all of you too,
Jennifer
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- September 29, 2010 at 11:05 pm
Jennifer,
I am so sorry to hear about all of this. I am in the medical field and I will tell you some of these docs agitate the daylights out of me! I always tell my patients to do all the research that they can and get it from evidence based studies not just a google search. I realize that there are not studies out there for every diagnosis that comes up but… An informed patient is an empowered patient. Docs get really agitated with me because I go into their offices knowing what the guidelines and recommendations are and I question anything they throw at me that I don't feel makes sense. I am glad that you found a second opinion and it sounds as if you are in good hands. I would definately follow the plan you have laid out as far as not going back to the previous MD and having your slides read at a different clinic. I know your frustration and I can empathize with you. I am sorry you were subjected to this. When I initially found out my lesions came back as melanoma I was wondering what to do. I sat myself down and I started looking at medical journals and researching studies, data and stats. Doctors tell you not to do this but my philosophy is if you look in the right places there is no harm in educating yourself. I went to see two different doctors and neither one could tell me anything different than I already knew going in the door. I asked them questions that they admitted most patients do not know to ask, I made them give me rationales for treatment and statistics. I even went so far as to tell them what the guidelines and recommendations are. I think every patient should be armed with knowledge about their disease process. I'm sorry, I am on my soapbox but I will tell you nothing agitates me more than a healthcare provider who does not educate and who does not explain what they are doing. If your docs were unsure of your dx they should have told you and they should have consulted their colleagues and got second opinions themselves.
I hope this all works out for you. I wish you the best.
Brandi
Tagged: cutaneous melanoma
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