1. < Gynecologic Cancers
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I’m devastated and struggling with vaginal melanoma

Posted by hoping4cure @hoping4cure, Jan 15 7:16pm

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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carol1024 | @carol1024 | Jun 16 11:17pm
In reply to @naturegirl5 "@carol1024 Oh, I was just asking what you meant you wrote the following: "I have stage..." + (show)
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@carol1024 Oh, I was just asking what you meant you wrote the following:

"I have stage 3C endometrial cancer and I've had 17 treatments. About to go on 4th type, doxorubicin, because others stopped working. I can put my scan on page and it will tell me what's going on in terms I can understand. " I wasn't sure what putting your scan on page meant. Does your patient portal give you this information in terms you can understand?

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@naturegirl5 ok this is "chat" between me and AI when I asked about the chemo drug doxorubicin. This is just one example of how it puts things in simple terms. I've probably got some text about a report I posted too but this is just to give you an idea. 🙂
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magscratch | @magscratch | Jun 17 6:30am
In reply to @rashida "@hoping4cure in Canada - at least in a Ontario where I live, doctors don’t do Pap..." + (show)
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@hoping4cure in Canada - at least in a Ontario where I live, doctors don’t do Pap smears after age 70. I have been diagnosed with vaginal lichen sclerosis by my physician and it has been kept in control with Clobetasol the past couple of years. My eyesight is bad so I can’t check myself for melanoma, but I hope my doctor would have noticed if I had it, when she examined me a couple of years ago …?

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@rashida I, too, have vaginal lichen sclerosus - a reoccurring problem. I have treated it successfully with Betamethasone. My dermatologist told me it's an autoimmune thing and that even babies can get it. I just finished up with radiation for perianal cancer and will wait a few more weeks for a follow-up with both the oncology surgeon and oncology radiation drs. to find out the final determination. I'm sure your doctor would have checked you out thoroughly, so just stay on top of it with your follow-ups and ask questions. Knowledge is Power.

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janthetravlr | @janthetravlr | Jun 21 11:28am
In reply to @carol1024 "@naturegirl5 ok but I was referring to the text that said......@carol1024 gives us good advice. Don't..." + (show)
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@naturegirl5 ok but I was referring to the text that said......@carol1024 gives us good advice. Don't as Google or AI source unless your doctor okays it. The information is often outdated and scares us. I'm trying to figure out who wrote that and if the word (gives) is a typo and meant to be the word "give" which would make the text read totally different. Lol

I replied to another text about the report being put to AI. Those reports read like a paper for doctor interns in college and while I have access to my reports, lab results etc there is nothing I can select that makes it easier to understand. I'm going to find some text between me and AI and maybe you can better understand what it's about. 😊

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@carol1024
AI is just what it says it is: artificial intelligence. It takes lots of misc. data and wraps it up in a package to give back to you and your comments/questions. If it makes it easier to understand medical terms and issues, that's fine. But remember it's built for you and your preferences. It is not the final answer. I know people who rely on it for advice and what to do next in life. Please know it is artificial!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 26 8:13pm
In reply to @cherokeenicki "@hoping4cure I totally understand what you are going through. I was diagnosed with vaginal melanoma in..." + (show)
Profile picture for cherokeenicki @cherokeenicki

@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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@cherokeenicki, welcome. How are you doing on immunotherapy this time around?

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