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December 23, 2012 at 1:57 pm #20872pknightParticipant
I was originally diagnosed with stage 3 nodular melanoma in February of 2012. in October of 2012 I was told I moved to stage 4. Over the last two months I have had no treatment! I had surgery scheduled but after my oncologist and surgeon discussed other options they decided to put the surgery on hold and do the B Raf testing and start treatment first. Due to many unfortunate problems with getting the tissue I was told the tissue block was to small to test. The surgery has now been re-scheduled for the first of the year. During the last 3weeks I have developed a bloated abdomen, pain in my pelvic region similar to menstral cramps, and worst of all severe itching and tiny little bumps that if itched turn into bigger crusty sores and welts. I went to the dermatologist who did not know what it was for sure but gave me a steroid cream, did not help. I have taken prednisone, still no relief. I try not to itch but I want to rip my skin off. I apply, or should I say, I have tried many different lotions and creams and no relief. I do not have dry skin but I am willing to try anything. My oncologist does not want to see me for this as he wants to focus on the surgery next week and then address this. I am going crazy with this. Has anyone else had anything like this?December 23, 2012 at 5:12 pm #58132Catherine PooleKeymaster Most oncologists become like a GP doc and treat the whole of you. I think you need someone else to care for you. Can you go to a specialty treatment center? Where are you located? I don’t understand why the delay with your surgery or treatment. We can help you find a better care provider if you let us know your geographic location. Sorry to hear all that you have endured.December 24, 2012 at 1:58 am #58133NYKarenParticipant Hi,
Did you mean that the biopsy was too small for BRAF testing?
My onc. derm took a little scrape biopsy. I’m not really sure how much tumor they need but it didn’t seem like much.
I think that Catherine is absolutely correct. My medical onc has become almost like a primary care physician. He addresses every aspect of my care–if it’s my concern, it’s his concern. And lucky for me, he never dismisses my ideas; if it weren’t for this Board and my suggestion, I never would have tested BRAF+ 2 years after testing negative.
I truly believe that if I hadn’t switched oncologists after finding the first to have been dismissive and cold, I would either be much sicker now or not here at all. WE MUST BE OUR OWN ADVOCATES.
Hope this helps, KarenDecember 24, 2012 at 6:02 am #58134pknightParticipant
Thank you so much for the reply. Part of the problem was that I was being treated by oncologist in two locations with one ordering tests where I live and the other in another state trying to manage my care. This has of course proven to be a failed attempt which I would blame the oncology office here where I live. They do not seem to be in any rush to order tests or to follow up on the results in a timely manner. I am now going to travel for all my visits so that my treatment can be managed appropriately. I live in Illinois but I will be receiving treatment at Washington University in St. Louis, Missouri where there are some very good and experienced oncologist and surgeons who deal with modular melanoma. I just wish I would have been a stronger advocate for myself sooner. I should mention that I did contact my oncologist here in my hometown regularly but the nurse was impossible to deal with and would not follow up on my results or question the delay in the results. I did call the physicians at Washington University which is why I have my surgery re-scheduled but they are wanting to see me on January 2nd I am sure due to the holiday schedule but the itching is driving me crazy…. I will see what they say in a week.
Thank you again.December 24, 2012 at 11:44 am #58135NYKarenParticipant
It only took me about 30 years to learn to advocate for myself. It sounds like you’ll be in good hands going forward. Don’t look back; hindsight is always 20/20.
Please keep in touch. Catherine has my email if you’d like.
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