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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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@rashida: I understand your concern. While you may not require a Pap smear, regular follow up checks for lichen sclerosis (LS) is a good idea. Although quite rare, vulvar melanoma has some potential predisposing conditions of which LS can be one. Your medical provider likely performed a thorough exam last time you had one but can you call to schedule another based on your history?
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2 Reactions@grammato3 I certainly will at my next appointment with my doctor which is scheduled for mid February. I did not know about vulvar cancer until I read the post by @hoping4cure!
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3 Reactions@hoping4cure
Is it possible for you to have brachytherapy and then immunotherapy without waiting to "see how you do" first?
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1 Reaction@val64
I had my second opinion and this oncologist agrees with my team to start with radiation.
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4 Reactions@naturegirl5 yes I go in for “planning” tomorrow and then start radiation on Thursday. 5 sessions, 5 mins per session via brachytherapy. Scared out of my mind.
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4 Reactions@hoping4cure. I’ll be thinking of you. If you’re working, have you been given ample time off or accommodations? What kind of pain control will you have afterwards?
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2 Reactions@hoping4cure
Thinking of you as you start your treatment .
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1 Reaction@hoping4cure
In my experience brachytherapy really wasn't that bad. It was quite unpleasant and very undignified for the 5 minutes. But immediately afterwards totally fine. For me, they played music (my choice) and had blue skies and palm trees on the ceiling.
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2 Reactions@hoping4cure I’ll be thinking of you tomorrow as you begin your treatment. Of course you’re scared, but you are also brave to take this step forward for your health 🩷
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2 Reactions@hoping4cure It's good that you sought out a second opinion. I hope that your radiation team is gentle with you today and helps you to feel comfortable. I was also very frightened the first time I had brachytherapy (I had 2 sessions). The team was very focused on helping me to feel as comfortable as one can, and my radiation oncologist was gentle in inserting the brachytherapy device. I told my team that I was scared and it felt good to say it out loud.
I'll be thinking of you as you start your radiation treatment tomorrow. Will you come back when you are ready and let me know how the session went for you?
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