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I’m devastated and struggling with vaginal melanoma
I’m really struggling. I’m a 47-year-old woman, about to turn 48. In November I was diagnosed with vaginal melanoma. I am a vulvar melanoma survivor and have been clear for almost 4 years. At my six month check up my gynecologist oncologist found a 3 mm lesion inside the vagina. I had surgery. during the surgery, They found an additional 1 mm lesion. Statistics of survival online has shaken me to my core. when I had the melanoma on my vulva I went through over a year of immunotherapy which worked beautifully for me. Now I feel like I was given a death sentence. My doctors considered putting me back on immunotherapy, but after much debate decided to start me on radiation, Brachytherapy and then see how I do. my recent scans in December show no evidence of disease so this is a local reoccurrence, If migrating to the vagina from the Vulva could be considered local. I’m spiraling- imagining my teens growing up without a mother, people forgetting about me. I did a deep dive online and there is absolutely no encouraging information. None of my doctors could give me a prognosis when I ask them but no one is telling me I’m gonna be OK either.
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Praying for you
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1 ReactionYou should join the private group called Endometrial Cancer Awareness on Facebook. It's for women only on and we just share and discuss treatments and offer tips. The odds are that someone in that group of thousands of members is going or has gone through what you are now.
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2 Reactions@hoping4cure It looks like you had your first radiation treatment yesterday. I'm hoping that your radiation team approached you with care and compassion and helped you to feel comfortable.
How was the session for you? How are you feeling today?
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5 Reactions@hoping4cure Sending love and prayers,
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1 ReactionI can't imagine what you are going thru but know that prayer and faith are two things to help you stay calm. You can do this for your daughters. Showing the the strength you have is a blessing to them. Love and prayers you are here and fighting.
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1 ReactionI had serous papillary carcinoma 8 years ago- stage 1-2 saw a weird stain color and went to gyno. Had chemo and afterward 3 sessions of brachytherapy- which really was no big deal. Just embarrassing having to spread my legs with the gorgeous Drs. looking there. There is a protocol after brachy-to keep the area stretched open =just a process and I also take Revaree plus to keep lubricated. I have lymphedema from radical hysterectomy and maybe brachy- that is the most annoying thing. Please stop researching on the internet- online told me my cancer type was severe and survival limited - terrible. Touch wood I am ok now 8 years later.
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2 Reactions@bocabird
My skin is white in the region of vulva and anus. Having biopsy Tuesday. Never thought of cancer.
@bdette728 Welcome to our support group and to Mayo Clinic Connect.
May I ask why your physician referred you for a biopsy? Are you having pain or itchiness? Or was this something your gynecologist noticed during your most recent exam?
@bdette728 Not talking about skin color- I was talking about a discharge color
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2 Reactions@hoping4cure I totally understand what you are going through.
I was diagnosed with vaginal melanoma in 2022 and went through immunotherapy for 14 months. I had surgery and my OBGyn Oncologist got good margins. I was cancer free for 18 months before I discovered a recurrence in March of 2026. I was getting Signatura tests every 3 months, but it did not detect the tumor. Apparently it had not shed into the blood, which is how Signatura detects the cancer. A PETscan showed the tumor has not spread and is in the same area as the last tumor. I have started immunotherapy again and am optimistic that it will work again this time. My Oncologist has stated that I will be on immunotherapy for a very long time. I also know some infusion nurses that told me there are people who have infusions once a month for years.
I know it is scary, but immunotherapy is very new and what it has accomplished so far is amazing. The internet is a very scary place and a lot of what is out there is old.
Have faith that you will get through this, and remember there are new ways to fight these cancers every single day. A few years ago we didn't have any sort of treatment for Melanoma.
I hope you are doing well and your cancer is in remission!
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