Just diagnosed with HPV cancer in the vaginal walls: Need support

@terriwright69 Welcome to our Support Group on Gynecological Cancers. I hope you will find the support and shared experiences as helpful as many of us in this group.

I did some research on Mayo Clinic Connect by typing the following - HPV vagina-- into the Search Bar at the top of the page. There are some discussions on HPV and vagina. While I realize these discussions may not be exactly the same as your diagnosis the members who provided support have lots to share that you may find helpful.

-- https://connect.mayoclinic.org/discussion/vaginal-and-anal-cancer-after-hpv-stage-2/

-- https://connect.mayoclinic.org/discussion/vaginal-cancer-diagnosis/

I am tagging a few of our members in this support group who have joined these discussions on vaginal cancer. @bunyipbaba @leahchawkins

What treatment has been recommended by your oncologist?

@naturegirl5
My tumor was too close to my urethra, so surgery was not an option. I had 33 radiation treatments and 5 out of 6 chemotherapy treatments. The chemo damaged my kidneys so I am left with Stage 3B kidney disease, and lymphedema. I finished treatment in July of 2025, so in essence I’m still recovering. I had HPV 30 years ago and had a total abdominal hysterectomy and naively thought it was gone, never to return. But almost 2 years ago, I noticed bleeding on my running shorts and then urinary incontinence. So after a few bad gyne appointments, I sought out Mayo.

@terriwright69
I am sorry you are dealing with this rare cancer. Is your diagnosis squamous cell carcinoma? I was diagnosed with squamous cell cancer almost 3 years ago at age 74. My gynecological oncologist told me the cancer was a result of very long term steroid use (for an entirely unrelated health issue), HPV, and old age. Because the steroids suppressed my immune system, my body never cleared the HPV. I had surgery to remove the tumor followed by 35 sessions of pelvic radiation and 6 rounds of chemotherapy with cisplatin. I was very fortunate to be treated at an NCI Center of Excellence. Other than the occasional UTI and treatment related issues (diarrhea, fatigue, sore skin around the treatment area, weight loss), I have been spared long term treatment related consequences so far. I go faithfully to follow-up appointments and contact my gyn-onc with any questions/symptoms that occur. If you have any specific questions, I will certainly try to address them based on my own personal experiences. Has your doctor done a biopsy? If so, what type and stage of cancer does the biopsy report show? What are the doctors recommendations going forward? I know how very frightening this diagnosis is and how little is known about treating this cancer. I got a notebook and wrote down all my questions and worries before each appointment as well as the information the doctor gave me. I also had my sister to go with me for the chemo infusions and some of the initial meetings. These early days following a diagnosis of cancer are overwhelming, but taking one step at a time may help you feel more in control of this unexpected situation. It is your right to ask as many questions as you have and to keep asking until you get answers that make sense to you. Take as much time as you need to make your decisions. Please let us know how you are managing.

@bunyipbaba hi…
Yes, it is Squamish cell carcinoma. I had 15 years of abnormal Pap smears with pre-cancer of HPV. It finally turned into cancer, unfortunately and is in the vagina walls I have or had a hysterectomy because of this and it came back unfortunately, I have to go in this Wednesday for a treatment plan at the radiology at Mayo Clinic. They did not give me a stage. They told me there was no stage.
Yes, I’ve been kind of down, but hoping that they caught it on time to where they can remove it. They may have to do a vaginectomy on me, but we will see.

@leahchawkins yes I’m at Mayo Clinic. I will go on Wednesday for a treatment plan and see what they have to offer as treatment. I’m sorry to hear about your experience. What has Mayo done for you?? I hear Mayo is very good

@terriwright69 I have been a patient at Mayo in Rochester since my diagnosis of endometrial cancer in 2019 with a recurrence in 2021. I had a radical hysterectomy in 2019 and my cancer (endometrioid adenocarcinoma, FIGO Grade 1) was staged 1a which meant no further treatment at the time. I had the recurrence in 2021 when my nurse practitioner at Mayo Clinic found a tiny polyp on the vaginal cuff. I returned to Mayo Clinic to have external radiation therapy and internal (brachytherapy). I feel my care had Mayo Clinic was excellent and I've been returning there for all of my follow-up appointments. So, I think Mayo is very good and you will get comprehensive and compassionate care in radiology or any other department you go to at Mayo.

Will you come back and let me know what Mayo Radiology recommends for your treatment plan?

@naturegirl5 thank you so much for your feedback.
Just reassured me that Mayo Clinic is going to give me the best treatment.
I will definitely keep you posted on what my consultation for for treatment is

@naturegirl5 I will know Wednesday what they recommend for the treatment plan

@terriwright69 From the many stories I have read on this site, Mayo sounds like an excellent place to be treated. Of course you have been down after hearing this news. Whatever you and the doctors decide regarding treatment, please keep us updated on your choices and your progress. Being strong when facing cancer does not mean you are not scared. To me, it simply means you are processing the bad news and working through the fear to formulate a plan. I will be thinking of you and wishing you the best outcomes. Please don't hesitate to reach out if I can possibly help with your questions and concerns.

@terriwright69 You mentioned that you would be going to Mayo the week of March 9 for the recommended treatment plan. What did the doctors have to say? Do you feel you have the information you need to make decisions about what comes next? I have been holding you in my thoughts and hope you are getting the expert care and support you deserve during this difficult and frightening time.