I have had a recurrence of endometrial cancer in the form of a polyp.

@dianavl Welcome to Mayo Clinic Connect. We're a site that provides support to you and I hope you will read other discussions and comments in our Gynecological Cancers Support Group. There is a lot of wisdom and emotional support among these women.

Whew, your recurrence is similar to mine. My nurse practitioner who I see for my active surveillance appointments (check-ups) found a polyp. Mine was located on the left vaginal cuff. I also had a PET scan (actually PET/MRI scan combined) and nothing showed up. That was a puzzle considering that the pathology report indicated recurrence of endometrial adenocarcinoma so off I went to radiation oncology. I had both external pelvic radiation (25 treatments) and 2 treatments of internal radiation (brachytherapy).

It's really stressful and anxiety-provoking to hear the words "recurrence". I was almost more shocked than the first time I heard the word "cancer" with my initial diagnosis.

When I saw the radiation oncologist for my recurrence I asked about future recurrences. What should I look for? What should I do? He answered my questions, and also gave me information to read. He also said that after my radiation treatments were completed I should return for active surveillance appointments (checkups) every 4 months that will include physical exams (that's how your polyp and my polyp were found, right?) and CT scan with contrast.

I get my cancer care at Mayo Clinic in Minnesota. Each of these checkup appointments are stressful for me but I'm so thankful that Mayo Clinic has taken such good care of me. My recurrence was caught very early.

When you see your radiation oncologist you can ask the question about future recurrences just as I did. It's been 2 years since my recurrence and nothing new has shown up. But I continue to go for those check-up appointments which I will do for 3 more years - assuming no other recurrences or new cancers.

Does this answer your question?

I was wondering about the hypermetabolic area that "lit up" during the PET scan. Is that an indicator of more cancer? Will it go away after the 5 internal radiation treatments?
I truly feel like the medical field has taken a very hard hit since covid. I go to a cancer center and it seems I experience a lot of apathy. I had to leave the last place/doctor I was going to because he started acting strange.

I'm so sorry to hear that you've had a recurrence. I'm not a doctor, but the area that"lit up" on your PET scan is almost certainly the same type of tissue as the polyp that was removed from the same location. It seems almost impossible that they could have gotten a clean margin (removed the entire tumor plus adjacent tissue) during an office polyp removal. Do you have the pathology report on the polyp?

The goal of the internal radiation treatment (vaginal brachytherapy - VB) is to kill the cancer. But as Helen experienced, often in this situation they also do a different type of radiation treatment called external beam radiation therapy (EBRT). EBRT involves many more treatments and has more side effects than VB. (VB has very few side effects in most women.) But it might be worth asking about.

I agree about the apathy. "Perfunctory" and "lackadaisical" were the words that came to mind when I was dealing with my "care team" this week. (Both the "care" and the "team" parts of that are pretty questionable.) Not sure whether it's because they're overworked or just can't be bothered. But you definitely have to advocate for yourself.

I had EBRT for my last recurrence. I did 20 of the 25 treatments. I had to stop because I was too burned. I vowed never again. I did agree to try VB. If it doesn't work and the cancer recurs again, maybe they'll try chemo again. If not, I have no other options. I will never do the EBRT again. I was never given or even told of a dilator, so I have bad atrophy.

Ugh, that sounds awful. Were your doctors mindful of your atrophy when they recommended VB? It's a fairly large cylinder that they stick in there, and quite uncomfortable, but only for 15 min at a time.

Do you think surgery might be an option?

Do you know if your tumor is MMR deficient? (Would be on original pathology report.)

I told the doctor when I met him that I had atrophy. The cylinder did hurt at the simulation. It felt like someone put a whisk in there! I got a call on Thursday asking me to come in an hour later than I was scheduled, so I could speak to the doctor, and also because they need to redo the simulation and scans. Now I'm a nervous wreck and my treatment will be delayed another week. It's already been 8 weeks of waiting. I wasn't told I have a tumor. I had a polyp.

Here is the Path report.

See Path report below.

How stressful that they need to redo the simulation! But if you can tolerate the simulation, the treatment is quite similar. And VB may well be your best option for an effective treatment. If it were me, I would probably also ask whether surgery is a possibility.

It looks like the pathologist thinks the polyp they removed is the same low grade endometrial cancer as your original tumor. The polyp, and almost certainly the original tumor also, is MMR proficient (that's what "intact nuclear expression" for MLH1, MSH2, MSH6, and PMS2 means), which is not the result you would hope for. (MMR deficient tumors tend to be very sensitive to immunotherapy drugs).

Good luck with your appointment.

@dianavl I don't have a medical degree and so I don't know how the amount of radiation is calculated and how it's targeted. Like you, I had external beam radiation therapy (EBRT) and I didn't experience any effects that you did. I've heard from others here about burns from radiation.

Here is what I experienced as a patient who had a recurrence of endometrial cancer. I had EBRT for 25 sessions. When I went in for the simulation my radiation oncologist was present as was the medical physicist. My radiation oncologist told me that the work of the medical physicist is to work out those very delicate calculations needed for radiation therapy.

After the 25 sessions of EBRT I had 2 sessions of vaginal brachytherapy (VB). My radiation oncologist worked with me to determine the size of the device that was most comfortable for me and so I didn't experience pain during the VB. Again, I don't know how the radiation was calculated, only that the radiation oncologist was present during the entire procedure both times.

Before the VB, the radiation oncology nurse spent about 30 minutes with me discussing what I needed to do to lessen vaginal atrophy. She gave me dilators and lubricant and showed me how to use them.

I'm very mystified why your cancer care team did not talk with you about the use of dilators after radiation. The radiation oncology nurse told me that sometimes the scarring of the vagina after pelvic radiation and especially after VB will make it difficult for vaginal exams after radiation. I do have some scarring at the vaginal cuff from the VB and shortening of the vagina from the hysterectomy because my cervix was removed. My nurse practitioner who does my follow-up exams said that she is able to use the speculum she used prior to radiation therapy.

Anyway that's a long story of my experience.