Newly Diagnosed: FIGO 2 Uterine Cancer: What does this mean?

@gratefulcat That's wonderful that you are three weeks post and you feel well. Also, that's very good news with Stage1a. It could be upsetting but actually helpful that you know you are at high risk for Lynch Syndrome and that you will be carefully monitored.

I had two sessions of brachytherapy when I had a recurrence of endometrial (adenocarcinoma) two years post hysterectomy. The team at Mayo Clinic helped me to feel as a relaxed as one can be in that situation and explained everything before it happened. So, no surprises which I appreciated. I did not have any pain with the procedure and felt comfortable enough to get up and walk away afterwards. I was fatigued overall from the external radiation with the two brachytherapy sessions but that was expected.

Long term side effects? It was explained to me that with external and internal radiation I needed to use a vaginal moisturizer on a regular basis and a vaginal dilator. The scar tissue from radiation can occlude the vagina and it's important to do this for one's long-term comfort and your future vaginal and pelvic exams. Hopefully, your radiation oncologist and/or the education nurse will explain all this to you.

When do you start the radiation and brachytherapy?

There is a discussion on radiation therapy here and you can read what others have shared as well as post your questions or your experiences:

What kind of radiation did you get for your gynecological cancer?

-- https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

@gratefulcat
I had Endometriod Adenocarcinoma Stage 1A, Figo grade 2. I initially didn't require any treatments, but had a reoccurance 7 months after surgery and had 28 external beam radiation treatments and 3 high dose brachytherapy ones. For me the external beam ones were very quick and simple. I had plenty of gastrointestinal issues from them and the 3 brachytherapy ones were given after about a 10 day break. They were not painful but awkward and lasted much longer than the external beam ones. I believe mine were about 14 minutes each. Thankfully there were only 3 of them. I finished mine in December and just had my first followup with my Gynocological Oncologist and am currently awaiting the results of my tests. I also had positive pelvic washings but wasn't initially treated with radiation. I wish you well and would be happy to answer any questions you may have.

I just want to chime in snd wish you luck. I was diagnosed with Stage IVb EC in 2019. Adenocsrcinoma (95%) and papillary serous (5%) grade 2. No radiation but only chemo. Since I was a suboptimal debulking (tumors remained on diaphragm, as well as lymph node that could not be removed due to the ureter and iliac vein basically embedded) radiation is being kept for a likely recurrence.

Hi Oregonrain7 -

Thank you so much for sharing your story with me. This information is very helpful. Were you notified of any long-term side effects when you went through your brachytherapy? Did you have a positive pelvic washing? They are recommending I have 4 treatments which feels so radical, and I am trying to make my decision with as much information as possible. The treatment is all in the numbers, as they say. Currently, I have a 12% chance or recurrence, and with brachytherapy, it's reduced to 3% so I would do the treatment if I felt confident it wouldn't create more complicated issues down the road.

I also have been working with a genetic counselor to find out if I have Lynch since I also have two of the genetic markers. My family members did not provide their genetic information; we only went through my family history. If I am diagnosed with Lynch, I would need to coordinate all future care through a Lynch specialist/coordinator whom we have here at our local hospital.

I wish you the very best in your journey and will keep you in my thoughts.

Hi giginorth -

Thank you for sharing your story here. Yes, that is one of my worries - I understand that you only get one chance with the treated brachytherapy area since the radiation "remembers" where the treatment occurred.

Wishing you all the best

Hi Helen,

Thank you so much for this information - I really appreciate it. Would you mind sharing the stage of your cancer / if you have a positive pelvic washing and if they did any additional treatments after the surgery? How do you feel two years after the brachytherapy? I'm trying to decide if I should have the treatment now or "save" it.

They would like me to start brachytherapy at the end of April, and as your experience, they did an excellent job of educating me on what to expect.

Thank you again, and all the best to you.

Hi cmb2022 -

Thank you so much for sharing your story here. It sounds like we had the same diagnosis. My doctor is recommending 4 brachytherapy treatments based on the positive pelvic washing result. They did not recommend external beam therapy for me. Would you mind sharing if you experienced the vaginal "sunburn" I am reading about?

Thank you again - I very much appreciate your information and support.

@gratefulcat
You are welcome! I will admit I was terrified when I learned I would need radiation, but the support I received here made it so much easier to know what to expect. I did not suffer from "vaginal sunburn". I just read about it. I hadn't heard that reference before today (and I thought I had done a lot of reading). I did get a terrible UTI during the last week or two of the external beam treatments. I ended up going through 3 different antibiotics before it cleared up and I did have lots of burning during urination that continued and was made worse for a short time with the brachytherapy treatments. I think everyone is different and hopefully you won't have any side effects. Take care and Happy Friday!

@gratefulcat Hi again,
I was diagnosed Stage 1a, FIGO 1 with endometroid carcinoma in August, 2019. My pelvic washings were positive. My Mayo Clinic GYNOncologist said that positive pelvic washings do not change the stage as would have been the case several years ago. (Positive washings in the past would have modified my stage to Stage III). The recommendations had been updated from FIGO. "We" still do not know if the positive pelvic washings were involved with my recurrence that was diagnosed in November 2021. According to pathology at Mayo Clinic it is more likely that something could have been missed when the tissue was examined after my hysterectomy in 2019. After all, the lab samples the tissue and they do not examine every square centimeter and every cell.

I am now one year, 3 months post brachytherapy. I did not have any side effects right after the brachytherapy or now. I continue to follow the radiation oncologist's recommendation that I regularly use a vaginal moisturizer and a vaginal dilator. I have a partner and an active sex life. I would say that the hysterectomy itself by removing the cervix along with the uterus (and fallopian tubes and ovaries) has affected me more than the external and internal radiation therapy.

Do you have any other questions? What you thinking today about brachytherapy?

I was warned of the possibility of damaging my bladder or rectum if not properly prepared before the brachytherapy treatments. They requested that I make sure that my rectum was empty. They should give you instructions for that. They also gave me specific instructions on how full my bladder should be.
On the days of the treatment, they used a CT scan to review the position of both organs. They then placed the applicator with the radioactive material using the CT scanner.
As follow-up, the radiologist recommended using a vaginal moisturizer and a vaginal dilator for six months.

As for the pelvic washing, I was not offered that. I will check with my oncologist on why this was not part of the protocol.
Please keep us up-to-date on how you are doing.
Kathy