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Rare mucosal melanoma in stomach-how to choose after surgery?

Forums Mucosal Melanoma Community Rare mucosal melanoma in stomach-how to choose after surgery?

  • Post
    wendywjj
    Participant

      My mum was dignosed as primary mucosal melanoma around cardia of stomach. The primary tumer is is a short pedicle polyps 5.7*5cm, basal part of tumor is around 2cm, it came from mucous layer. She had a ESD surgery first because thegastroscope biopsy result showed benign. But after the dignose with phthology, she received another surgery with a wider dissection (proximal gastrectomy).The pathology after surgery showed another small 1*1*0.5cm tumor in the same cardia area and 1 metastatic lymph node metastasis located in the right of cardia (out of 21  dissected lymph node) with negative up and down incisal edge. The surgeon said that my mum is a T2N1M0. Immunohistochemical result:Negative in BRAF, CKIT & NARS, PD-L1 22C3. The hospital also held a MDT to discuss this case. However, the next treatment suggestion is not clear, they are saying that this is a rare case and there is no clear evidence showing any effective treatment plan for this kind of mucosal melanoma.My mum is under observation now without any adjuvant treatment.Some doctors suggest to use interferon alfa or could even try PD1 (though it is not approved by CFDA yet now in China). I had checked NCCN guidelines, clinical trial results and articles… …I know observation is a choice, but is struggling if we should use some medcine to "control" this a bit.

      And also the smaller tumor(1*1*0.5), is it a satellite or in-transit or another primary? My mum should belong to stage 3, right?

      How can I predict how invasiveness this tumer is? Would Ki-67 help to predict? Would a tumer genetic testing(showing TMB, MSI) help to predict?

      How should I choose the treatment ? What should I pay attention to if my mum just wait and watch?

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    • Replies
        Cindyco
        Participant

          Hi, my mom had anal mucosal melanoma. Right now all mucosal melanomas are being treated similarly. The standard route is surgery, then immunotherapy.  Push for treatment if you can. This disease is very aggressive, even with treatment. Everyone responds differently and mucosal melanomas have lower response rate to treatment.  Unfortunately, my mom is now on hospice after she developed leptomeningeal disease after having a good body response to biochemo and now ipilimumab. She previously did ipilimumab/nivolumab combo, Keytruda, Abraxane, Imcgp100/pd1 combo, biocehmotherapy, and mono ipilimumab since September 2016. 

          Mucosal is not measured in terms of invasiveness the way cutaneous is. Mutation burdens tend to be lower as well (my mom only had about 20 mutations and none with targeted treatments available). I would definitely get the tumor tested anyway to have that information on hand should a treatment for a particular mutation come up in the future. Good luck.

            wendywjj
            Participant

              Thank you so much Cindy! This is really helpful! So it seems that the treatment result really depend on individual reaction. I saw some of your old posts and those are really helpful as well! I guess my concern is that we cannot figure out if treatment works since my mum does not have any evident metastasis for now. And I got into the facebook group, will see you there!

            Cindyco
            Participant

              https://www.facebook.com/groups/906485416088740/

              This is a good Facebook support group with other mucosal melanoma patients and caregivers.

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