Recurrence of gynecological cancer

I have stage IIIC uterine cancer. I had a complete hysterectomy which showed the cancer had spread to my sentinel lymph nodes (hence the stage III), but my tubes and ovaries were clear. My pre-chemo CT scan was clear.

I am between my 4th and 5th out of 6 cycles of chemo and I now need to decide whether or not to follow-up with radiation therapy. My medical oncologist (University of Iowa Cancer Center) feels that since radiation therapy will not increase my life expectancy, that the side effects of radiation therapy are not worth the benefit (benefit = a reduced risk of recurrence at the vaginal cuff). If I have a recurrence in the future I should just treat it at that time.

The two radiation oncologists that I've consulted with (U of I and Mayo) both recommend 25 external radiation treatments, with Mayo adding 2 brachy (internal).

I'm age 60 now and tolerating my chemo well. I've met my insurance out-of-pocket maximum, so treatment yet this year would be at no additional cost to me. On one hand, if it's not necessary and just overkill, I don't want to subject myself to the potential: scarring of my colon, bladder, etc; permanent incontinence; need to use a vaginal dilator for the rest of my hopefully long life. On the other hand, I feel I'm more equipment to handle radiation now than I might be if I have a recurrence at age 70 or 75. The treatment, should I have a recurrence, is radiation therapy, but probably at a stronger dose and/or a greater number of treatments, resulting in greater trauma to my colon.

I apologize if this should have been a separate post, rather than a comment on this existing conversation regarding recurrence. I would greatly appreciate input from those of you who have had recurrance or have had to make a similar decision as me. Thank you!

I was diagnosed with endometrial cancer in 2019. Had a total hysterectomy. 3 years later cancer returns. Started chemotherapy for 18 weeks. Next PET scan cancer free. Six months later cancer returns. Second round of chemo (18 weeks) PET showed 2 remaining cell were small enough to go on maintenance for 54 weeks. Last PET shows I now have 5 cells, two have tripled in size. I am now in a depressed state where I have never been before.

Has anyone experienced this many recurring episodes.

Im going to MDAnderson for a second opinion.

Hi. I have similar diagnosis and staging and finished six cycles of chemo in may and the 25 fractions/ treatments of external beam radiation last Tuesday. I will finish up with three brachytherapy treatments mid august. The external beam rad was easy and only had minor side effects. If you decide to go forward follow their prep to the tee. I drank water 45 minutes prior which helps to move organs out of the way as much as possible to lessen rad to other organs. My rad onc was very clear on potential side effects but to me the fear of recurrence was greater. My rad Onc says that usually when it recurs it is at the cuff hence the brachytherapy. I fully understand your concerns and am not sure this helps in any way. Take care

Thank you for sharing your experience. I have decided to proceed with radiation therapy. All of the recurrence stories make me want to do everything I can to reduce that risk. Best wishes to you and to everything following this thread that is on this journey!

@jeanadair123

My gyn-oncologist told me there was a 95% survival rate for my diagnosis over 5 years. I took that to mean the chances of recurrence was 5% or less - not the same as survival, I know. She also told me that if I had a recurrence it would most likely be within the first few years and would be found in the vaginal cuff on physical exam. This was in answer to my question of what would follow-up be like. Would I have regular scans? No, no scans on those initial follow-up exams. After the recurrence in 2021 I have a physical exam with a speculum and CT scan.

I cannot figure out why an oncologist (or gyn-oncologist?) would not do a physical exam with a speculum. It's so good that you were persistent with your request.

Like you I purchased different dilators than what I was given at Mayo after I finished radiation therapy. I use dilators that are soft and have a more natural feel to them. I have also used a few different lubricants and gels until I found one I liked. I use it two times a week and have "graduated" to a larger one over time. So I guess what I'm doing is working.

How are you doing overall, @jeanadair123? How are you feeling?

I hope this helps other women who read this. We absolutely must advocate for ourselves. Because no one else will do it for us.

Hello,
I just found your Connect group, and you all are so helpful and full of wisdom!
I was diagnosed with endometriod adenocarcinom grade 1 2b
in April 2023, after postmenopausal bleeding, an ultrasound showing excessively thickened
endometrium, and a polyp (1.7cm) along the right posterior lateral junction of the lower uterine segment and cervix; and the biopsy of endometrium.
Freaked out.....not in my plans now or ever.
I'm in the Houston area, so I found a gynecological oncologist at MD Anderson the next week.
She said what all of you have said: if you're going to have cancer, this is a "good" one to have , because of early symptoms of bleeding.
Had my Robotic assisted total hysterectomy and bilateral salpingo-oopherectomy on May 17, 2023.
Healed for 6 weeks, and my Dr. said she wanted me to have 5 HDR vaginal radiation brachytherapy treatments. I had 1 treatment daily for 5 days. It was prophylactic; specifically targeted to the top of the uterine cuff, where cancer would possibly reoccur, if it would happen. I was a little tired after the treatments, but it didn't last to long. I will say, I enjoyed my nap times.
And then.....the dilator!
I hate it, but I do it 3 days a week for 15minutes. Last wednesday, I got my first UTI. I've never had one before. I think I was using the wrong soap to clean my "tool".

A few questions: I have asked my oncologist if I will have a CT scan at my 3 month checkup in September. She said, No, it's not protocol for your type of cancer. Which, they all say it is totally gone after the surgery and radiation.
But really, how do they really know. And I have read stories about recurrence.
So that worries me.
Right now, I'm still at the beginning of my journey, and hopefully it will be a good one with not too many bad hiccups. Thank you all for your wonderful information!

I was diagnosed with endometrial cancer in 2019. Had a total hysterectomy. 3 years later cancer returns. Started chemotherapy for 18 weeks. Next PET scan cancer free. Six months later cancer returns. Second round of chemo (18 weeks) PET showed 2 remaining cell were small enough to go on maintenance for 54 weeks. Last PET shows I now have 5 cells, two have tripled in size. I am now in a depressed state where I have never been before.

Has anyone experienced this many recurring episodes.

Im going to MDAnderson for a second opinion.