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Lymph Node Came Back Positive

Forums General Melanoma Community Lymph Node Came Back Positive

  • Post
    JeffWSweeney
    Participant
      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.

      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.

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    • Replies
        ed williams
        Participant
          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
            JeffWSweeney
            Participant
              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.

              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.

              ed williams
              Participant
                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.
              Jydnew
              Participant
                My husband was dx at age 26 as well, back in January 2002. Primary melanoma on his upper right arm, microscopic spread to the sentinel axillary lymph nodes. He was dx at 3a, which at the time conferred a 50% survival rate, but we now know was more like 80%. At the time, interferon was the only option other than surgery. He declined it, so surgery with a wide excision and to remove all his axillary lymph nodes was the only measures he took. He turns 48 next week. I was very active on these boards back then, and saw many people with similar dx go through recurrences, but many also go back to their lives with longterm NED. I don’t know what the proper course of action is, given all the medical advances over the past 2 decades, but I wanted to give you a hopeful experience at what I remember as a devastating and confusing time.
                mmbraddock
                Participant
                  Hi Jeff!
                  I was diagnosed stage 1b at 40 and had wide exicision surgery at Moffitt Cancer Center. Followed up every three months for five years and all good. Two years ago, I felt a swollen lymphnode in my groin. They biopsied it that day and I started a trial at Moffitt within two weeks. Everyone has a different take on trials but I get very consistent close care and cutting edge treatment. I was braf+ and did preadjunt treatment (targeted therapy before my lymnohnode dissection. I jusr suggest looking into options rather than standard of care, if possible. I am lucky I live near one of the best cancer centers. Feel free to message me directly with any questions. The waiting is the hardest part, treatment is not a breeze but at least you are “fighting it.” All the best. MM
                    JeffWSweeney
                    Participant
                      Thank you so much for reaching out. It’s wild that you had growth off of a 1b but this disease is so unpredictable. I appreciate you offering to talk through it, and that your treatment has been going well. I live near a very strong cancer center as well, so I also feel fortunate. I’ve been investigating other treatments and plan to talk with my oncologist about some of them.

                      Since I started this post my PET scan has come back clean, and I’ve started adjuvant Keytruda treatments with my second one this Friday.

                    JeffWSweeney
                    Participant
                      Thank you so much for reaching out. It makes me feel very good to hear your story and it gives me some hope. Since I started this post my PET scan has come back clean, and I’ve started adjuvant Keytruda treatments with my second one this Friday.
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