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
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
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!
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!
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.
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.
Joined: Jan 2005
Re: Vaginal melanoma
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
Joined: Jul 2005
Re: Vaginal melanoma
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
Joined: Sep 2006
Re: Vaginal melanoma
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!
Joined: Jan 2007
Re: Vaginal melanoma
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!
Joined: Dec 2006
Re: Vaginal melanoma
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!
Joined: Jun 2018
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,
N/A
This comment has been removed by the Moderator
Joined: Jul 2021
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