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Diagnosed with mucosal melanoma on 12/21/18
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Diagnosed with mucosal melanoma on 12/21/18

› Forums › Mucosal Melanoma Community › Diagnosed with mucosal melanoma on 12/21/18

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    • January 20, 2019 at 2:37 am
    sherricrim
    Participant

      Hi, All.  I am Sherri.  I just got out of hospital today.  Had anal tumor removed (WLE) as well as left groin lymph nodes.  I still have drainage tube in (will be removed Weds).  Surgeon told me I was Stage 3 mucosal melanoma.  PET scan last Monday just showed enlarged left groin lymph nodes.  I am in Kansas City MO area, and there does not seem to be specialists here with expertise in this rare cancer.  From researching the scientific literature and talking to oncologist, I am aware that there is some hope with immunotherapy.  It will be a week or more before lab results regarding what kind of mutation I have (excuse any ignorance with terminology).  As surgeon told me he was not aware of clinical trials and oncologist confessed to not being familiar with mucosal melanoma besides the statistics, I think it may be up to me to search out best aftercare.  I have read (on old posts here) about how good Dana Farber is.  Any other suggestions?  Also, do I just call up, or do I need referral?  Any and all help would be greatly appreciated.    Thank you!  ~Sherri 

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        • January 20, 2019 at 2:56 pm
        Bubbles
        Participant

          I am so sorry for what you are going through, emotionally as well as physically, Sherri!  Your experiences can't have been (be) fun!  Yes, mucosal melanoma is a bit of a different bear than cutaneous melanoma and unfortunately we do not fully understand those differences.  BUT.  At this time, mucosal melanoma is still treated as melanoma is generally, and that is based mostly on Stage as well as mutational status (there are many, but mostly looked at as BRAF positive or negative).  Immunotherapy has been used a great deal now, so finding docs and institutions used to administering and managing it is not as difficult as it was when it was first FDA approved in 2011.  I'm sure others can chime in regarding facilities in your area, but Dana Farber does have a good reputation in melanoma care.  As to melanoma treatment generally, this post might be of help to you:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  There is also a list of acronyms at the end that might be useful.

          I hope this helps.  Ask more as you have the need as this board if filled with smart and caring peeps.  I wish you my best.  Celeste

            • January 21, 2019 at 9:49 pm
            sherricrim
            Participant

              Thank you, Celeste, for the helpful information ❤️.

            • January 20, 2019 at 8:05 pm
            RichInLife2
            Participant

              I will second the recommendation to find a melanoma specialist. I am currently being treated at Dana Farber and I am mostly happy with the care I am getting there. The only reason that I say “mostly” is because dealing with side effects (real and imagined) has been problematic, mostly due to distance. They are a three hours drive from where I live, factoring in traffic, which is always an issue. 

              I would never dissuade anyone from going there, but I would advise you to think about the logistics of seeking treatment far from home. Are you able to travel frequently or live there while undergoing treatment?

              If you want to consider options closer to where you live, here’s a link from the Melanoma International Foundation listing cancer centers by state:

              https://melanomainternational.org/web-resources/cancer-centers/

              You won’t need a referral. 

              Good luck!

                • January 21, 2019 at 9:50 pm
                sherricrim
                Participant

                  Thank you so much! ❤️

                • January 22, 2019 at 8:19 pm
                Becky
                Participant

                  When was son was diagnosed ( mucosal , oral , stage 3) I went to a seminar with melanoma specialists from UCSF. I remember someone asked about mucosal and they said once it was stage 3 or 4 there was no difference in treatments. I know you are less likely to have certain mutations but other than that I think it’s more important to find a melanoma specialist rather than a mucosal melanoma specialist ( if they even exist)

                  good luck to you

                    • January 23, 2019 at 2:16 am
                    sherricrim
                    Participant

                      Thank you for your response and supportive information :-).

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