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Positive lymph nodes biopsy

Forums Cutaneous Melanoma Community Positive lymph nodes biopsy

  • Post
    JeanD
    Participant
      Hi,

      My wife has been diagnosed in August 2019 with cutaneous malignant melanoma (biopsied in May 2019) at the junction between the shoulder and the neck (Breslow thickness 1.4mm, ulcerated, mitotic index 2.2mm/sq). She’s had (early Sept 2019) a wide local excision, and sentinel nodes removal and biopsy (one node in the neck, one in the armpit).

      The results of the biopsy have just come back three weeks later, a nurse told us a small volume of cancerous cells has been found in both nodes. We don’t have the results themselves (or any more details), and probably won’t for at least two more weeks.

      She is being booked in for a whole body CT scan (including the head). The nurse also says follow-up check-ups will be CT scans as well. She also says that if the scans do not show any further spreading, nivolumab or routine surveillance will be options.

      Additional info: she’s 39, very susceptible to inflammatory / auto-immune issues, including her thyroid entirely non-functioning since her mid-twenties. She’s got a family history of skin cancer (mum, and melanoma for her grandmother). She’s done a year of on-and-off sunbed sessions when she used to do bodybuilding (don’t ask).

      Here are some questions for all of you knowledgeable people:
      – What important numbers / facts from this lymph node biopsies should we ask for?
      – How risky (radiation-wise) will the scans be? I understand from the FDA webpage that the amount of radiation from a CT scan is not too bad (increased cancer risk of about 1 in 2000 for a 10 ms scan they say). However the dose of radiation for a whole body scan is not listed (chest alone is listed at 8 ms), and if this process repeats with every new check, the whole amount of radiation is going to be huge.
      – We still have no info on when (if?!) tests for genetic mutations will be done. Should we insist that it should be done asap, or is there any reason to forgo it (like identical treatment in any case)?
      – If there’s no sign of distant metastases, any thoughts on just surveillance?
      – Is it a bad sign that both lymph nodes where the mole used to drain are affected, or is it always symmetric when it drains in two places? Also I assume the spread in the neck node is the more worrying because of the risk of brain tumors?

      Thank you very much for your help!
      Jean

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    • Replies
        Bubbles
        Participant
          I am sorry for what you and your wife are dealing with. You sound as though you have done some melanoma home work already but here are some sites/links that may be helpful:
          Here is the MRF melanoma guidebook: https://online.flippingbook.com/view/340078/
          Here is some information regarding Stage III melanoma, since if I am reading what you report correctly and no further evidence of spread is found, your wife will be Stage IIIB: https://www.aimatmelanoma.org/stages-of-melanoma/stage-iii-melanoma/

          So….what do you do about all that? First, let me try to answer your questions:

          You will need to ask about the amount of melanoma in the lymph nodes. Did it remain within the lymph node? (It sounds as though it did from what you report and that is good.) What is the BRAF status of the tumor within the node and from her cutaneous lesion? There ARE different treatment options depending on mutation status.

          No one wants radiation of any kind. However, the scans needed for diagnosing and following melanoma provide minimal radiation, especially when compared to progression without recognition. (Many of us here have had more scans than we can count and we haven’t grown three heads. Yes. That’s melanoma humor and it helps!)

          Should brain mets occur they do so. Location of the primary lesion or initially affected nodes are not relative in any of the literature or experience I have noted.

          Now….it is good that the lesion has been removed along with the positive sentinel nodes. It is of course a negative prognostic sign that two nodes were affected with melanoma. Unfortunately, your wife’s age (younger than 40), presence of mitoses, ulceration and thickness are all negative prognostic signs as well. Hopefully, no more melanoma lesions will be found on scans and she will remain a Stage III melanoma patient. If lesions are found she will progress to Stage IV.

          Choosing a treatment path in melanoma is intensely personal. That said, were I in your wife’s shoes, given the presentation and factors I just covered, I would run to the nearest melanoma specialist I could find and seek adjuvant care (treatment provided despite no evidence of current disease) in the form of immunotherapy or targeted therapy (something that works only if you are BRAF positive) ASAP!!!

          No, I didn’t start speaking Greek. Just melanoma jargon. Here is a primer I put together that covers all current routine melanoma treatment options and a link definitions of acronyms at the end: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Here are innumerable reports on adjuvant treatment: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant

          I know that is a lot to take in. However, you can do it!! Your wife is lucky to have you in her corner.

          FYI: There is much hope! Melanoma is not the death sentence it once was. Like your wife, I was diagnosed with Stage IIIb melanoma in 2003 at the age of 39. None of today’s therapies were available at that time. In fact they were only FDA approved in 2011 and the adjuvant use even later. So….no matter what I wanted, I was relegated to watch and wait. So, I watched until I progressed to Stage IV melanoma with brain and lung mets in 2010. After having the right upper lobe of my lung surgically removed and the lesion to my brain radiated…I qualified for an NED arm of a Stage IV trial of nivolumab (Opdivo) that year. I and my fellow ratties took nivo for 2 1/2 years. We have done very well!!! In fact, despite my sordid history, I remain NED for melanoma to this day with my last treatment in June of 2013.

          I wish you both my best. Ask more questions as you have the need. This board is filled with many caring and knowledgeable peeps. Celeste

            JeanD
            Participant
              Hi Celeste,

              Thank you very much for your detailed answer, much appreciated. And congratulations on your resilience!

              Thanks for your reassurance about radiation dose! I’m happy with the jargon, even though we have been in this circus for a lot less long than you have, it our world too now!

              It makes sense to go for adjuvant (assuming no further spread) treatment asap, thank you. We are in the UK though, so there will be no running anywhere, just limping along at the NHS’s pace (me wife’s “known” her mole wasn’t right since last autumn, having the NHS take it seriously took all this time). We have an appointment in two weeks with an oncologist (not sure if she’s a melanoma specialist or not), and CT scan in the same timeframe, we never have a choice in timing or personnel I’m afraid. At least the NICE guidelines that NHS doctors are supposed to follow seem in line with the recent literature I’ve found, as far as I’ve seen yet, but I’m eager to check with you all for a second opinion all the same!

              “Should brain mets occur they do so. Location of the primary lesion or initially affected nodes are not relative in any of the literature or experience I have noted.”
              -> I thought morbidity was pretty different based on where the mole was, for example I remember reading recently that head/neck was twice that of face? I’ll paste a link when I find something of that sort again.

              Thanks a lot for your help,
              Jean

            MichelleRHG
            Participant
              Do whatever Bubbles says! Especially run to a melanoma specialist. Get on an airplane, whatever it takes. Best wishes to you both!
                JeanD
                Participant
                  Thank you. However, if that’s a plane to the same country then it’s still the NHS, and to a different country then the entire cost will be on us (if they accept to take us at all), from what I read about the cost of immunotherapy (it runs in hundreds of thousands pounds/dollars?) that might not be feasible.
                Bubbles
                Participant
                  Just to clarify our responses about speed and planes, Jean! I was not aware you were in the UK, though we have lots of peeps from everywhere on this forum. While there are differences in the UK vs US systems of healthcare, I can note pros and cons of both. In the US, we have a less structured system in some ways. While there may be some benefit in that, it can also mean you could be treated by someone who knows very little about or has no experience in treating your disease. In the UK, things are more structured. Granted, there can be downsides to that, but given that the NHS protocols are in place, you are likely to get up-to-date care no matter where you go! So that is good. Our recommendations of “speed” are related to that as well. You are not in a “crisis” situation. I mean, you don’t need to sit on this…but I think if you continue to make progress as you describe things will be fine.

                  You are correct, there is a tiny bit of literature that addresses location of mets based on location of original lesion as well as origin of mets – as in where mets start first and then tend to spread, etc. Guess it wasn’t entirely fair to ignore it, but given where you are and how inconclusive that data is, I didn’t want get into the weeds too much. To be more accurate, I probably should have stuck with what we absolutely know about melanoma ~ it is utterly unpredictable and does whatever it wants no matter what we think we know about it! My usual phrase is: Melanoma sucks great big green stinky wizard balls!!! Still, your wife has you and hope!!! That is something indeed. Will keep fingers crossed that her scans are clear. Stay in touch. c

                    JeanD
                    Participant
                      Thank you, that makes sense! Sorry, I forgot to mention the UK thing in my OP, and there does not seem to be an ‘edit’ button.
                    JeanD
                    Participant
                      We’ve received further info from the nurse today:

                      Her armpit lymph node has a 0.7mm deposit melanoma (so I suppose just surveillance is further out the window), weakly positive for mela-A. The node also has a capsular and septal nevus with bland spindle cells that is not a melanoma (but I could not manage to understand from google if “bland” makes it more likely to be aggressive or more benign?), and is very HMB45 positive (I assume that would be a bad sign?).

                      Her neck node has a 0.5 mm by 0.2 mm (depth) metastatic melanoma, within septum with no parenchymal involvement (good if I understand correctly), only focally and weakly positive, but S100 strongly positive (bad if I understand correctly).

                      I’m obviously eager for the appointment with the oncologist (melanoma specialist fortunately!) in two weeks; in the meantime any further clarification / advice is very welcome!

                      Thank you,
                      Jean

                      PS: I’ve also got questions about patient-side advice, things that we can try as patients beyond following medical advice/treatment, like running / nutrition / etc. I think it might be better if I create a separate thread for it?

                        Bubbles
                        Participant
                          A new thread for life style as a melanoma patient may well get you more responses. I will let you start with this:

                          We have learned a lot about the gut microbiome over the past several years. When its importance first became clear lots of folks jumped on the probiotic band wagon, taking pills to fortify their “system”. Sadly, we learned that was NOT helpful!! Instead it was much better to attain good natural cultures from the foods we eat. At this point, there are even studies under way to examine whether there is any benefit in fecal transplants from those who do well on therapy. Here’s a link to one discussion of that: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/les-my-awesome-poopy-story

                          We have also learned that when antibiotics are needed, they certainly should be taken! However, they do us no favors in regard to our gut health. Here are tons of articles on all those subjects:
                          https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=microbiome

                          There have been many conversations on this topic on this forum. The search bar here is helpful.

                          Amount and type of activity during treatment varies person to person. Edwin (a seriously cool dude on this forum) and I have run our way through treatment and melanoma. Others are unable to do so. Basically, good health habits are encouraged to the extent one can participate in them. Unfortunately, no specific food, juice, or activity has been proven to free us from melanoma. But, certainly – start a new thread so that you can gain additional perspectives. c

                          JeanD
                          Participant
                            Thank you.

                            I have created a new thread (on the 26th), but it does not show up on the list of threads of this forum. Strangely, I can access it nonetheless: https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page/science-based-lifestyle

                            I might have clicked twice on create, it said something about approval. Should I try to recreate it again (or is the system going to hate me even more?) 🙂

                            Bubbles
                            Participant
                              I’m not sure what is going on. Did you include an emoji? Those will not post. You may just try to create a new thread. c
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