Vaginal melanoma

cheech
cheech Member Posts: 4
edited August 2022 in Skin Cancer #1
This week, I was diagnosed with Vaginal melanoma. Prognosis doesn't look good for this type of cancer. Where can I turn for treatment?

Comments

  • oneagleswings
    oneagleswings Member Posts: 425 Member
    I am so sorry to hear of your diagnosis..you can try to search this site or even google the words "vaginal melanoma" to see what comes up..perhaps your oncologist has some suggestions?
    What are his treatment suggestions?
    Bev
  • Carvs
    Carvs Member Posts: 30
    I am sorry that you have melanoma. I have Stage III melanoma (started on the skin and metastasized to a lymph node). There is an active melanoma group (MPIP) with a BB http://www.mpip.org/bb/bbindex.html that you might want to check out. Also, if you search the internet with mucosal melanoma in the search string, I think there is a group that deals primarily with that form of melanoma. However, I know there are people who post on the MPIP too that have mucosal melanoma and I've noticed a couple with vaginal primary's post. You may want to check out the NCI http://www.cancer.gov/cancertopics/types/melanoma and they have links to comprehensive cancer center. The NCI has ongoing clinical trials with melanoma and also has a database to search for ones near you. Best wishes, Carver
  • Hander
    Hander Member Posts: 6
    I am 28 yrs old and was diagnosed with stage three melanoma this past October. I don't know where you live but I am from Knoxville,TN. My oncologist sent me to Vanderbilt University in Nashville. They specify in melanoma cases and the doctors there are some of the best in the country. I can't say enough good things about them. Just an idea!
  • Tammyg919
    Tammyg919 Member Posts: 1
    My mom was recently disgnosed with vaginal melanoma, also. We've been to several 'top' hospitals, including NYU and Columbia; however, we decided to take a trip to the Cancer Center of America, (there are 4 in the U.S. and all travel expensives are paid for by this Center) where she is currently being treated. We're pretty happy with the results so far. At this Center, she's treated as an individual, not a statistic. Be Positive!
  • cheech
    cheech Member Posts: 4
    Tammyg919 said:

    My mom was recently disgnosed with vaginal melanoma, also. We've been to several 'top' hospitals, including NYU and Columbia; however, we decided to take a trip to the Cancer Center of America, (there are 4 in the U.S. and all travel expensives are paid for by this Center) where she is currently being treated. We're pretty happy with the results so far. At this Center, she's treated as an individual, not a statistic. Be Positive!

    Thanks - all. I've ended up at MD Anderson in Houston. I've had 2 surgeries to eradicate the tumor and in 2 wks, I return for radiation. After that is another consult, then I probably start chemo, which I can do here in IL.
    This is mucosal melanoma and I've just learned about NCI and their PDQ's. Great website for general info!
  • This comment has been removed by the Moderator
  • Sheren
    Sheren Member Posts: 2
    edited June 2018 #8
    cheech said:

    Thanks - all. I've ended up at MD Anderson in Houston. I've had 2 surgeries to eradicate the tumor and in 2 wks, I return for radiation. After that is another consult, then I probably start chemo, which I can do here in IL.
    This is mucosal melanoma and I've just learned about NCI and their PDQ's. Great website for general info!

    Vaginal Melanoma

    Hi.  My mother was recently diagnosed with vaginal melanoma.  She had surgery to remove it but the margins came back positive.  I am very worried about her.  How is everyone doing with their treatment?  Any feedback would be appreciated.

     

    Thanks,

  • Mamabear_2
    Mamabear_2 Member Posts: 6
    mucosal melanoma

    Hi, I am 3 months out from surgery and radiation for mucosal melanoma in my nose. The orginal diagosis and prognosis were bad, the treatment was brutal but not as bad as other people I saw and got to know during the 30 radiation treatments. I am recovering and am having more trouble with depression and 'survivor's guilt' and how to answer people who are trying to be positive with 'you look great' and 'it is wonderful that you are finished'. During the treatment I had a lot of support from family and friends and the people at Hopkins. My scans were clean, it was not in the lymph node they took during surgery and I will just be checked every 4 or 5 months with scans to make sure it doesn't show up elsewhere. 

    I tend to be someone who doesn't like to 'whine' so when I do say anything to friends or family about the side effects that I am still dealing with I immediately say something like 'I am just grateful that I am alive and will stop whining now'. They are usually very supportive so this is mostly my issue. I don't understand why my emotional state is worse now than while I was going through treatment (except at the beginning when I was told that with surgery I still had a 60% chance of dying). 

    I guess I am looking for people who with whom I can share this bizarre PTSD/depression after getting through the treatment and surviving what sounded pretty unsurvivable at the beginning.

    Paula

  • parthena
    parthena Member Posts: 4 *

    Hi there


    my husband got diagnosed with advanced localized paranasal mucosal melanoma in 10/21

    its been a very difficult year for us with end of life now upon us - I don’t know what to say