Stage 4 vaginal cancer, does anyone have a clue what next step is an

Posted by sweetaddy @sweetaddy, 5 days ago

I have stage 4 vaginal cancer, I have c9mpleted 6 rounds of chemo, 31 external radation, 1 brachy and 1 more tomorrow. Tumor has shrunk to 2.5mm from 4mm. I had to retire earlier than I plan to. Which sucks, I know it's terminal... but what is next choices for my treatment plan.

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

@sweetaddy I'd like to welcome you to Mayo Clinic Connect and to our support group. Your diagnosis must have been very alarming to you. I know mine was (endometrial cancer) when I had postmenopausal bleeding and went to my gynecologist. I hadn't considered cancer and the first few days after the initial diagnosis were a blur to me.

Mayo Clinic Connect is made up of members like you who come here to ask questions about the experiences of others and to support one another. We are not medical professionals so cannot recommend medical treatments but we do share our own experiences.

Have you typed Vaginal Cancer into the Search Bar (at the top of the screen) to read what others have posted at Mayo Clinic Connect? That's a good place to start to read about the experiences of others.

There are different types of vaginal cancer that are described in the Mayo Clinic website:

Mayo Clinic: Vaginal Cancer

-- https://www.mayoclinic.org/diseases-conditions/vaginal-cancer/symptoms-causes/syc-20352447

Do you know what kind of vaginal cancer you were diagnosed with? I imagine that your oncologist's recommendations for where to go next in your treatment is based not only on the stage but also type of cancer. Will you have a scan (CT, MRI or PET) after you've completed the 2nd brachytherapy tomorrow? Have you talked with your oncologist about clinical trials that are available to you?

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I have a rare form, I was born without a vagina, MRKH. It is the skin graph I am #5 in the world to have this. We haven't discuss after treatment.. I had a MRI last week n probably another tomorrow part of the planning stage for brachy. I will probably have another PET 6 weeks from now. I'm sure there is more chemo, more radation, trying to research options....

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@sweetaddy

I have a rare form, I was born without a vagina, MRKH. It is the skin graph I am #5 in the world to have this. We haven't discuss after treatment.. I had a MRI last week n probably another tomorrow part of the planning stage for brachy. I will probably have another PET 6 weeks from now. I'm sure there is more chemo, more radation, trying to research options....

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Hi @sweetaddy, I had to look up and learn about MRKH (Mayer-Rokitansky-Küster-Hauser Syndrome). As you already know, vaginal cancer is a rare form of cancer that most often occurs in the cells lining your vagina.

If I understand correctly, your cancer has developed in the skin that was grafted to create your vagina. This is not cervical cancer or uterine cancer that has spread to your vagina. Do I have that right?

While you are no stranger to dealing with a rare condition, I'm sure it doesn't diminish the shock of dealing with stage 4 of a rare cancer. I'm tagging fellow members like @helenteitzel @marys1956 @rainyp who also know the shock of a rare diagnosis of vaginal cancer.

While not vaginal cancer specific, you may also wish to join this discussion related to brachytherapy:
- Brachytherapy for endometrial cancer: What are long-term side effects?
https://connect.mayoclinic.org/discussion/brachytherapy-for-endometrial-cancer-long-term-side-effects/

How did treatment go today?

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