Recurrent Vaginal Cancer
Hi everyone, I had stage 3 vaginal/lymphnode cancer in 2022. I had chemo, radiation and brachytherapy. I was in remission until May 2025. The vaginal
cancer came back. My Oncologist told me I cannot have more radiation or chemo. He also told me I may not be able to have surgery. Anyone else been through this?
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I have not, but I don't like all the Nos I would be getting another opinion
@warrior2225 I understand the reason that your oncologist said that you cannot have radiation therapy or brachttherapy again. That's a treatment that only be done one time in the same location. My radiation oncologist told me that when I had radiation therapy for recurrent endometrial cancer.
Like @denisestlouie I'm unhappy about the "no's regarding chemotherapy. We aren't medical providers here on Mayo Clinic Connect so I cannot give you medical advice. I can share that if this were me I would be asking why the oncologist said "no" to chemotherapy and what are other treatment options are available. I would also be looking for another opinion from a different oncologist. Are you located near a comprehensive cancer center in the U.S.?
Find an NCI (National Cancer Institute) Designated Cancer Center:
-- https://www.cancer.gov/research/infrastructure/cancer-centers/find
Why not more chemo? Not sure how many sessions you had but I've read of people having 25 or so. I just finished my 5th treatment on June 9th. I'm doing immunotherapy also and no radiation or anything else as of now. Not sure if she'll want that. I'm stage 3C endometrial cancer
Get another opinion. I'm on another round of chemo treatment that is different from the first treatment I had almost a year ago. That one didn't work so well, as new tumors appeared and others increased in size. The treatment I'm on now has reduced the tumors and stopped new ones from forming. So, there are treatments out there for recurrence. The treatment I'm on now is a targeted drug that goes by the brand name ENHERTU. It's been effective for breast cancer and is now extended to treat endometrial cancer.
Mine came back like you I couldn’t have more radiation so now I’m on immunotherapy drug. Feel ok since
Just an FYI I visited Memorial Sloan Kettering in New York City to get a second opinion
Dr did agree with my current doctor, but she explained to me all the new clinical trials and different types of protocols for recurrent endometrial cancer that they are using and very successful with
So if any protocol one is on is not working, I would recommend another opinion from MSK.
@warrior2225 Good morning. I'm circling back to you to see if you've had any thoughts on what you might do next? Thee are some good suggestions here that mostly include getting a second opinion from a different oncologist. What do you think about these suggestions?
Over a year ago I went for a second opinion about my endometrial cancer at MSK and was incredibly disappointed. The doctor dominated the conversation, asking me questions about what had happened with my case so far. She fended off any attempts by me to ask questions. Then she recited the standard of care at me. If I had wanted a recital of the standard of care, I could have listened to my own oncologist. As I was leaving, I softly expressed how disappointed I was, and that this was not what I was hoping for from a second opinion at MSK. I might have made her cry.
They also redid the pathology on my original specimens, and they screwed it up. My original pathology report said my specimen was a p53 mutant, based on the immunohistochemistry. I had the DNA sequenced and there was, in fact, a p53 mutation. But the MSK pathologist looked at the same slides and said it was normal for p53. Wrong.
Then, more than a year later, I contacted MSK about a clinical trial. Initially they called me right back, and asked, among other things, if I had been there before. They declared that I was this doctor's patient. I said that if I came for a trial, I'd rather see someone else. They said they'd get back to me about trials I might be eligible for, but I never heard from them again. So I don't know if there just aren't any trials that I'm eligible for or if I've been black balled.
Everyone has different experiences. I have a friend who received great care at MSK and another who had a second opinion similar to yours.
Also, and sadly, there are still
doctors with a god complex.
Personalities and communication skills DO matter. The medical journey can be full of disappointments…..
I was diagnosed with stage 4 endometrial cancer in Aug 2023. It had spread to my lymph nodes. In oct 2023 I had a complete hysterectomy and removal of several lymph nodes. I went through chemotherapy and radiation in 2024. In Oct 2024 my oncologists found a spot on my vagina that was serous carcinoma, the same cancer I had before. She did a partial vaginectomy and started me on keytruda infusions. In May 2025 she found another spot and 3 weeks performed another partial vaginectomy. I will start taking oral Lenvima daily in addition to the keytruda infusions. I don’t understand why you could not have this done.
Does anyone know what side effects I should expect from the Lenvima and keytruda?