I’m devastated and struggling with vaginal melanoma

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?

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.

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

@kanderstag and @hoping4cure how was your melanoma discovered?

@rashida I saw the original vulvar melanoma myself. At one of my regular 6 month checkups, my gym oncologist did her usual internal exam and spotted a tiny mark in a fold in the vaginal wall near cervix.

@hoping4cure Thank heavens you are consistent about going to your regular 6 month checkups. This is how my recurrence for endometroid adenocarcinoma was discovered through a physical/pelvic exam. This is too awful to consider but imagine what would happen had we not returned for our scheduled exams?

I know it's tempting to look up our respective cancers and treatments on the internet. But I realized that this only fed my anxiety and did not provide me with reliable and valid information. My gyn oncologist and radiation oncologist both told me that the information from reliable websites is often out of date by the time it appears. So I had to tell myself to trust and rely on what my oncologists told me.

Our emotions don't easily follow our logical minds. With what I wrote above, please consider trusting your "wise mind" which is the combination of your emotions and your logical mind. I have had to do this over and over again. I still do.

Do you have appointments set up for your next steps in treatment?

I just used AI to take one look at your situation and got this reponse:
"Even when vulvar cancer involves the vagina, treatment can still be curative, often using:
- Surgery (sometimes more limited than people fear)
- Radiation therapy
- Chemotherapy combined with radiation

One important reassurance is that Vulvar cancer tends to spread locally and slowly compared to many other cancers. Vaginal involvement does not automatically mean late-stage or untreatable disease."

@hoping4cure: spiriling and melanoma unfortunately seem to go hand and hand. And researching online frequently reinforces that. I hope it helps to read the perspective from people like @kanderstag who have been through a similar experience and can share such a positive outcome with you.

One thing I learned after my own metastatic melanoma diagnosis (funny, autofill wanted to put in “meltdown” for melanoma- which could have been an appropriate substitution!) was how outdated some of the information was in terms of prognosis. Brachytherapy and newer treatments have shown such tremendous progress in treating our conditions.

Do you find a degree of reassurance in hearing this?

@inquirer: that was kind of you to offer support. AI can be helpful in finding out information but a word of caution here: aside from there being a difference between certain diagnoses - such as vulvar cancer and vulvar melanoma AI may contain bias from skewed data and cannot provide personal experiences that may offer encouragement from those who have successfully managed the condition.

I believe Mayo has some helpful insights into the role of AI in medical management. I’ll see if I can find that and add it into the discussion.
Great, found one: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/what-is-generative-ai-artificial-intelligence-what-does-this-mean-on-mayo-clinic-connect/

@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 …?