Has anybody been diagnosed with vaginal cancer?

Welcome @dianakaye. I moved your question to the Gynecologic Cancers Support Group here: https://connect.mayoclinic.org/group/gynecologic-cancer/

I'm also tagging fellow members who have experience with vaginal cancer like @leahchawkins @bunyipbaba @tatersinger @warrior2225 @deedee74 @nelsonjm and others.

What a blow to be diagnosed with vaginal cancer 6 years after successful treatment for uterine cancer. What treatment plan has been recommended to treat the vaginal cancer? How are you doing?

Hello Diana… I was diagnosed with HPV Squamous Cell Cancer of the vulva January 2025 after having symptoms for almost 8 months prior. Diagnosed with cervical HPV in 1990 and after 4 laser cryosurgeries, ended up with a total abdominal hysterectomy in 1995. Everything was fine until May 2024 when I developed vaginal bleeding which advanced to urinary incontinence as the tumor grew into my urethra. In May of 2025 I underwent 33 radiation treatments and 5 chemotherapy treatments over 9 weeks. Surgery was not an option because of the tumor abutting my urethra.
I was very sick during treatment and ended up in hospital at Mayo for 10 days. I developed chronic stage 3 kidney disease, lymphedema with fatigue and shortness of breath. I live with these issues daily but I am cancer free so far, which I am so grateful for. I still return to Mayo every 3 months for all the scans and blood work (8 hour drive each way) and each time I become a little anxious. It’s a tough, terrible type of cancer but I’m grateful to be alive. My life is different than it used to be definitely, but I am alive and so far, so good. If I can answer any questions regarding my path, reach out!!❤️❤️

@dianakaye I’d like to welcome you to our Gynecologic Cancers Support Group. What a huge shock it must be to received this diagnosis after 6 years out from your original diagnosis of uterine cancer.

I see that our Director, @colleenyoung moved your post to our group and that you’ve already received one note from @leahchawkins. Please keep returning here as I know you will receive more.

I am thinking that your mind is racing with all kinds of thoughts and worries. Would you like to share some of those thoughts and feelings with us?

@dianakaye Hello, Diana. What a nasty, unexpected development after 6 years on your road to recovery. I was diagnosed with HPV squamous cell carcinoma primary vaginal cancer 3 years ago. I had surgery to remove the tumor then chemoradiation (35 pelvic radiation sessions and 6 Cisplatin chemo infusions). The vaginal cancer was apparently the result of long term steroid treatment for an unrelated health issue. I remain under active surveillance with my gynecologic oncologist and am fortunate to have minimal term negative issues so far. Always in the back of my mind is the possibility of local recurrence or metastasis to another part of my body. What treatment are your oncologists recommending since you have already had radiation treatment for your uterine cancer? Are you working with the same oncologists who treated you six years ago? Do you feel comfortable with where you will be going for treatment, with the doctors you have, and with the information you have been given? I, too, read all the survival statistics when I was diagnosed, but wise and experienced people on these pages remind us that the statistics we see are usually based on information that is several years old and that advances in treatment are ongoing. As you already know, you must be your own strongest advocate. I hope you have support from friends and family as you navigate this most recent challenge. I and others are here to support you and answer questions based on our own experiences.