I’m devastated and struggling with vaginal melanoma

Posted by hoping4cure @hoping4cure, 4 hours ago

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.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Colleen Young, Connect Director | @colleenyoung | 3 hours ago

I'm tagging fellow members like @canadaigua @kanderstag @caga, who may have experiences to share.

@hoping4cure, I can imagine you're spiralling. This is just so much to take in. And you're taking in the information in gulps while gasping for air. Let's pull out some of the hopeful parts of your post.
1. Your original cancer responded well to immunotherapy. That's good to have in the back pocket.
2. Radiation has been recommended. Glad to hear there is more than one possible treatment option.
3. Recent scans found no evidence of disease.
4. Assumed to be a local recurrence and not further spread.

I point out these things not to make light of your situation, but in the hopes of slowing the downward spiral. Deep breath. We're here. We're listening.

Have you been scheduled for brachytherapy? Got questions?

hoping4cure | @hoping4cure | 3 hours ago

Thanks for writing back Colleen. I’m so scared and can’t stop crying. I thought I beat this and now it’s in a new worse area. I’m waiting for a call to be scheduled for brachytherapy. Even tho the scans were clear, from what I’m reading online it has a very poor prognosis. I can’t find a single success story. I just want someone to tell me it’s going to be ok and I don’t think that’s going to happen.

kanderstag | @kanderstag | 3 hours ago

I can definitely understand what you’re going through however, Colleen has some positive points that I can only second.
I am a Vulvar melanoma survivor for three years now. I had radiation and immunotherapy and negative scans and exams since.

I’m glad that you have kept up all of your follow up and that a plan is getting in place to help you

I will keep you in my thoughts and prayers and I hope you’ll be able to get back to us with a definitive plan moving forward
All the best