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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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@naturegirl5 I've been itching inside the labia. Not where the white is. She noticed this during visit. I really never looked for skin color. Not even sure how long it has been like that. I treated for yeast infection. I went because I'm having prolapse and afraid of bladder or vagina tissue falling out. I'm 80 and have been told by docs I no longer need to see gyn. I'm so worried now that I may have cancer. I'm not hurting where skin is white.
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1 Reaction@cherokeenicki I would never thought of lightening skin being a sign of cancer. At 80 it's the last thing I expected. Having back and hip problems and don't know if I can go through more pain. I'm still taking care of yard and myself and traveling. I read older posts and it's scary. Thanks for giving positive encouragement as I was hoping to live 5 to 10 more years. I love life! ❤️ good luck with your treatment and I pray you will beat this.
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1 Reaction@bocabird mine is skin color.
Stay off Google. Much of that information is outdated. Some people do not like AI, some ways I don't either, but Meta AI is great at breaking things down where I can understand them. 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. ChatGPT will do the same thing. There has been times where the AI said exactly what my doctor did and a few Google searches. You can try it. Just pose the question you want. I do Meta through messenger because I don't have to download the app like you do for ChatGPT. No question is too complicated for it.
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2 Reactions@bdette728 Itching inside the labia could have many different causes so it's good you went to the doctor. What is it with telling women after a "certain age" that we no longer need to see gynecology? I'm going to ask my provider in gynecology that question.
@carol1024 provides us with good advice. Don't ask Google or any AI source unless your doctor OKs the source. The information is often outdated and just frightens us even more.
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1 Reaction@carol1024 The patient portal I have is MyChart. through Mayo Clinic. When I pull up a report I'm asked if I'd like an explanation. When I do that, the terms are highlighted so I can look them up.
What does "scan on page" mean? Do you upload your information into an AI source? I don't type any personal information or upload any of my information to any AI source as it's not secure.
That's not how AI works. All I do is screenshot what I want done then copy it to the page. You can delete it as soon as you get it explained.
@naturegirl5 I'm not understanding that comment if it's to me. I haven't provided anyone any advice from Google and AI doesn't give advice so I'm confused. Lol
@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?
@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. 😊