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

Gynecologic Cancers | Last Active: Jun 10 2:33pm | Replies (3)
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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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Replies to "I have a rare form, I was born without a vagina, MRKH. It is the skin..."
Colleen Young, Connect Director | @colleenyoung | Jun 10 2:33pm

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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