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Possible Recurrence now — Have Questions
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Possible Recurrence now — Have Questions

› Forums › General Melanoma Community › Possible Recurrence now — Have Questions

  • Post
    • February 3, 2020 at 6:02 pm
    Lori0529
    Participant
      Dark “skin tag” on upper right thigh observed in November, 2015
      11/12/15 Melanoma Diagnosis
      Breslow Thickness 2.85
      Clarks Level: Four
      Ulceration: Present

      12/1/15 Wide Excision Surgery
      Sentinel Node Biopsy
      At follow-up visit the doctor indicated that Sentinel Node Biopsy was negative, but in reviewing some of the report details it says “faint focus of additional activity”

      Thankfully, I have not had any health issues since the surgery.

      Have continued regular dermatology visits as well as CT scans of the Chest, Abdomen, and Pelvis/ follow up visits with a Melanoma specialist every 6 months.

      All has been well …. until today.

      Had a doctor visit today following CT scans last Friday.
      The scan report indicates there is a 19 mm suspicious lymph node in the right groin.

      Within the next 2 weeks he wants to proceed with:
      Brain MRI
      Whole Body PET scan
      CT Scans of Chest, Abdomen, Pelvis
      Biopsy
      Surgeon Consultation

      He indicated that if this lymph node is positive for melanoma, he would recommend:

      Immunotherapy followed by surgery

      I have an appointment with the surgeon tomorrow.
      Are there specific questions I should be asking?
      The possibility of a complete lymph node dissection sounds very scary.

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    • Replies
        • February 3, 2020 at 6:54 pm
        Bubbles
        Participant
          Sorry you are dealing with this, Lorio. Lymph nodes can enlarge for many reasons so hopefully this enlargement is not due to melanoma. My most immediate thoughts are:

          “immunotherapy followed by surgery” – surgery on what? If he is referring to a complete lymph node dissection – we have learned CLND provides no survival benefit and is no longer indicated. Here are many reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=clnd

          I would try not to get too far ahead of myself until I knew the pathology of this swollen node. For instance, a brain MRI may not be needed if it is not positive for melanoma. Same with the PET scan. But, perhaps that’s just me.

          If the node IS positive for melanoma. I would make sure I was seeing a melanoma specialist, or at least oncologist (and surgeon) who has treated many melanoma patients. All current FDA approved treatments have only been so since 2011 – changing the landscape for treatment, management of side effects, how to read scans, and when to have surgery a great deal. Additionally, should it be positive for melanoma, it should also be tested for the presence of mutations, as targeted therapy is only effective in patients who are BRAF positive. Hopefully, your onc and surgeon will be aware of the need for this additional testing.

          Here is a primer I put together on current melanoma treatments that may help you think about your options and questions to ask: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html

          Hope that helps. I will still keep fingers crossed that this lesion is not melanoma at all. However, if it is – there is hope!!! I am living proof. Stage IIIb in 2003. Stage IV in 2010 with brain and lung mets. NED since 2010 and remain so for melanoma after treatment with Nivolumab (Opdivo) in a clinical trial. Ask more questions as you have the need. celeste

          • February 4, 2020 at 5:42 am
          JudiAU
          Participant
            Bubbles is right of course. But if they are looking for melanoma brain MRI + PET are to be expected and ultimately that leads you to immunotherapy if it is positive.

            I am sorry you are here today. But know this is aLso the best place to be.

              • February 4, 2020 at 1:41 pm
              Lori0529
              Participant
                Thank you both SO much for your replies.

                Super helpful information and very encouraging support.

                • February 12, 2020 at 3:24 pm
                Lori0529
                Participant
                  Additional updates:

                  Jan 31 — Bi-annual CT scan of Chest, Abdomen, Pelvis
                  Feb 3 — Follow up with doctor — scan shows 19mm enlarged groin lymph node very suspicious for melanoma
                  His treatment plan included the following before seeing him in 2 weeks on Feb 17
                  Brain MRI
                  PET Scan
                  Surgeon Appointment
                  Ultrasound Biopsy

                  He explained that it was important to get moving on all of it.
                  He also provided me with Yervoy and Obdivo information and explained that my case would most likely involve immunotherapy followed my surgery to remove the groin lymph nodes.

                  Feb 3 — Had Brain MRI (without contrast)
                  Feb 4 — met with surgeon who agreed it was melanoma suspicious
                  Brain MRI was clear
                  He described a treatment plan that would include immunotherapy followed by a Superficial Inguinal Lymph Node Dissection
                  I asked if immunotherapy could lead to avoiding surgery and he said not in my case because of the size of the lymph node
                  Feb 11 Ultrasound Biopsy
                  (Before going in for the Biopsy, the doctor office called to let me know they are scheduling Round 1 of Immunotherapy for Feb 17 after my next doctor visit)
                  Feb 12 (Today) Looking at the Biopsy report in the online portal it says:
                  Preop diagnosis: Melanoma
                  Postop diagnosis: Same

                  Still waiting for PET scan to be scheduled

                  I am in Florida

                  Earlier in the week, I called Moffitt and they explained that they need a current Biopsy report before they can schedule a consultation.

                  Any feedback on this potential treatment plan? Anything I should be asking/doing?

                  Moffitt is 90 minutes away — what are the advantages of pursuing treatment there?

                  • February 12, 2020 at 6:16 pm
                  Bubbles
                  Participant
                    I am glad they are going ahead with immunotherapy. I am very glad your brain MRI was clear. Very hopeful that your PET will be clear as well. Having a melanoma specialist can make all the difference. I would at least seek a consultation with the folks at Moffitt. They may simply say that the plan your local onc has instituted is their best recommendation for you and you can just return to that and carry on. Moffitt and my participation in a phase 1 nivolumab trial there from Dec 2010 t0 June 2013 (along with a couple of years of follow up) saved my life – and I traveled from Chattanooga, TN!!!!! So, yeah. I think getting an expert opinion from them when it is only a couple hours’ drive away is totally worth it! Hopefully, they will tell you to simply pursue what you are planning with your local onc. However, if there is something more complicated on your scan or should you ever have any other need – you will be an established patient and be ready to go. With many things in life, especially melanoma, it pays to prepare for the worst while definitely hoping for the best. And you have a lot of reason for hope!!! – celeste
                    • February 12, 2020 at 6:37 pm
                    Bubbles
                    Participant
                      One other thought/question. So it seems that you have only had a biopsy of the node – which was positive for melanoma – but not yet had removal of the node??? If I have that straight then…. Moffitt may look at surgery to that node very differently. I mean, removal of a single node from the groin – is not that big a deal in the overall scheme of things. A CLND is a much bigger deal and has a greater risk of lymphedema. Still – why have surgery if you don’t have to?? So I would think one could start immunotherapy – give the area time – and see how it is doing in 3 months. If it goes away – clearly, no surgery needed. Not to mention the new and improved response rates we are seeing from Neo-adjuvant treatments (treatments done with the lesion in place). Here are some reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=neoadjuvant This may be something the folks at Moffitt would be able to render a more informed opinion on than your local onc. So, if you have not yet had surgery to that area – I would want to see what Moffitt has to say about that BEFORE I underwent surgery. If you have already had that node completely removed – well never mind! HA!!! C
                      • February 13, 2020 at 1:02 am
                      Lori0529
                      Participant
                        Thank you so very much for your insights —

                        You’re correct — only a biopsy of the swollen node has been done — not surgery.

                        On Feb 17 (Monday) I will get more details on the overall plan as well as begin Immunotherapy.

                        My initial impression is they may monitor what happens with this node during the Immunotherapy treatments
                        Can how it responds be a helpful gauge as to how the treatments are working?

                        Thinking I will begin all of the treatments as planned and then try to consult with Moffitt as well — prior to the more extensive surgery that is being recommended.

                        • February 13, 2020 at 1:28 am
                        Bubbles
                        Participant
                          Of course! If the node disappears while on immunotherapy – then that is awesome!!! Just think of all the folks with a great deal of active, inoperable disease who see their tumors go away with therapy! So I think that it is reasonable to at least give the one node a chance to evaporate while on therapy – knowing that you can always have it surgically removed if it doesn’t respond. Your plan to start therapy as stated and see Moffitt for their recommendations before making a final decision regarding that surgery sounds like a good one. I wish you my best. c
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