Hello! My name is Jeff and I’m a 26 YO male in Chicago. I went to see my dermatologist about a weird lump on my knee in August, and a biopsy came back with melanoma. After having excision surgery and a sentinel lymph node biopsy, my results came back positive for melanoma in the lymph node. I have appointments with my oncologist and am getting a PET scan next week, but I’m here looking to understand my disease better, and talk to others who’ve dealt with it.
- October 13, 2023 at 5:46 pm
Specifically today what I’m most curious about, is that the lymph node infections were described to me and per the report seem to be very minor in nature. It is described as “the largest cluster extends over a diameter of 0.25 mm. No extracapsular extension is noted.”
This seems to me to be a positive sign, I’m curious what others experience with this has been. Will update post after meeting with my oncologist.
Jeff, staging is a process of gathering information. Depth of tumor, lymph nodes positive or negative. If positive you jump up to stage 3 and depending on some factors will settle into a letter following #3. I was 3a back in 2012 based on pathology and sentinel lymph node biopsy results. Not great options back then for treatment as there are now for what is called adjuvant treatment. Stage 3 is tough, do you throw the big guns at the cancer, if there is any left in body or wait to see if it comes back and then treat. I progressed to lung and brain tumors by 2013 and was treated with cyberknife SRS radiation for the brain mets and then qualified for checkmate 067 clinical trial where i was lucky to get nivolumab Pd-1 drug before FDA approved. Well, long story, short version, still here and drug treatment worked. Today there are more options for treatments if the cancer was to return than back in 2013-14 timeline. Big decision will be to wait and watch with scans or treat with immunotherapy right off the hop. Ask them to do BRAF+ mutation genetic testing to see if targeted therapy drugs will be an option. Aim at Melanoma has a great information page of what to do after staging as does the MRF have information to help you understand options. https://www.aimatmelanoma.org/?gclid=CjwKCAjw-KipBhBtEiwAWjgwrBCW6ihYXuPklhQrHcajTheIFJcrG_PrmWZ6t6yqCf0JCxD5zJY5aRoCP9oQAvD_BwE
- October 14, 2023 at 7:11 pm
Thank you Ed! This was very insightful and reassuring to read. I am glad to hear your treatment was a success, and even more glad that you took the time to answer some of my questions.
- October 15, 2023 at 5:21 pm
As of now I am being staged at 3b pending the results of my PET scan. I’m anxious to hear the treatment approach my oncologist will endorse. Will definitely be asking about BRAF+ testing.
Jeff, without BRAF status they will probably offer one year of either of the PD-1 drugs, Nivolumab (Opdivo) or pembrolizumab (Keytruda). The problem with adjuvant treatment is the risk of developing life long issue from the drugs are real and for endocrine toxicities they will be life long. It all becomes stats at this point, what % chance of melanoma coming back vs doing observation with scans. Tough to make the right choice, I am sure your oncologist will go over the numbers with you. I had Nivolumab and developed kind of fatigue issues that have not gone away. I also have developed some stomach issues that are pain in the ass. I can not sleep on flat surface without acid reflux any longer. I stayed on the treatments for a long time as back then they had no end point, the drug as part of clinical trial was available until progression. Good luck with the decisions, no wrong way to go as if you decide to wait on treatment it will be just as effect if you were to progress. A lot of new stuff in development as well for stage 4 patients which is great in having options.
- October 15, 2023 at 6:59 pm
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