External radiation and brachytherapy for reoccurrence

Torziv

I was diagnosed with Stage 1 grade 1a endometrial adenocarcinoma last year and had a total hysterectomy. Last month they discovered a recurrence and had a PETCT scan. Thankfully, they found nothing more but I learned today that the protocol is 5.5 weeks of external radiation (5 days/week) followed by 3 sessions of brachytherapy. I was not quite expecting this amount of treatment but I'm told it's standard protocol for a recurrence. I'm trying to get a sense of what I can expect in terms of side effects from 5 weeks of radiation as well as what I can expect in terms of what to expect during the procedure itself. Any input anyone is willing to share would be very much appreciated. I'm certainly not looking forward to any of this! Thanks very much. Carol

Torziv

NoTimeForCancer

Hey Carol, so sorry to hear about the recurrence. It stinks to get that kind of news.

I had both external (5 weeks of 5 days) plus 3 brachy as part of my initial treatment years ago.

For external I had IMRT. You don't feel anything with radiation, but since I was getting radiation to the pelvic area where a lot of red blood cells are generated, it made me very fatigued. I did have to insert a soft plastic dilator during the treatment itself. I had a desk job and there were times I just had to stop, and at night I would manage to eat something and fall over to sleep.

Brachy was bizarre to me. It is like dilator they insert, they hook up a line so the radiation can be 'delivered' to the vaginal cuff area. This type of radiation can cause vaginal stenosis so you will want to ask them if they are giving you dilators to use after treatment ends. We joke they are like wax candlesticks, but this is very important to use afterward treatment ends. I am not going to lie, they were challenging at first, but it takes time. They come in different sizes too.

While radiation continues to work after you have stopped treatment, you will start to bounce back when it ends.

This is where I had a conversation with a dietician who specializes in helping cancer patients. She showed me a very interesting study of gyn cancer patients who took probiotics and those who did not. I had already been taking them so side effects were less, but you also need to watch what you eat. Protein is important and since radiation can cause diarrhea you need to watch out for that. Again, this is where probiotics really helped me.

I do know others here have had different experiences though, and while I was not told to have a full bladder during radiation, and I think they were, you might want to check on that. You want to protect your bladder.

Hope that helps dear.

Torziv

Thanks very much for your support. I appreciate your comments on the use of probiotics. I'll be sure to continue taking them. They did mention the use of a dilator following the brachytherapy so I was aware of that. They do want a full bladder but an empty rectum everyday. That's a challenge as I can't control the latter. I go for the simulation on Friday so I will hopefully get more questions answered. Thank you for taking the time to respond. Carol

bav

Hi Carol,

I've been where you are! I had a very similar diagnosis (except 1b) in 2022, hysterectomy, and was given the option for radiation and declined due to the very low chance of recurrence and the relatively high chance of side/long effects. I had recurrence about a year later, and then had the radiation protocol similar to what you are describing, 25 external and 4 brach.

I think it was during my simulation that they gave me three pin point tattoos (one on each hip and one over my pubic bone). I felt well enough to drive myself to all appointments and was able to work in the mornings (from home). Low grade nausea was fairly constant throughout radiation. I needed a lot of rest and was very fatigued most days.

In my case I was supposed to arrive having had a bowel movement but with a full (but not too full!) bladder - but as notimeforcancer says above, they may ask for something different for you. I did my best with that but sometimes the techs would check me and then have me go try to pee or poop, or drink more water. I didn't have a problem holding still on the table but that was another requirement. I think I was originally supposed to have 5 brachytherapy and then they decided I needed just 4, or may be it was four and I ended up just having 3. In any case, I wish I'd asked 'how do you know when it's done." :-)

Looking back: I wish I'd started probiotics earlier, I wish I'd massaged all by hysterectomy scars earlier, I wish I'd been referred earlier to a physical therapist that specializes in pelvic health (so helpful, still working with her), I wish I'd asked more questions about use of the dialator. I was given one that was way too large on my last day of radiation, with just casual instructions, and it caused problems for months afterward.

Maybe there is something helpful in these details. I hope you feel free to ask lots of questions — whatever is on your mind — of your doctors and of us here if needed.

Torziv

https://csn.cancer.org/discussion/comment/1720938#Comment_1720938

Your protocol sounds very much like the description given to me. The bladder and bowel instructions are very similar. The nurse said that this dr wants to see no poop or gas! Great! Ner impossible 5 days a week for 5 weeks. Thanks for the tip on the physical therapist. I will ask if they have any recommendations. I do appreciate your input! Carol

Shell0817

Sorry you are having to go through this, but you have gotten some helpful responses. My diagnosis was Stage 1 Grade 3 and I had the same radiation and brachy treatments you described right after healing from my hysterectomy. Fatigue was the biggest issue for me. I was warned that the first week and half or so would be easy, but the fatigue would set in and it certainly did. It was hard to have the full/almost full bladder for each treatment, but I found that eating protein rich food and staying very hydrated was so helpful. I did have a lot of stomach issues throughout treatment and lost about 40 lbs. I also had a UTI two different times. It seems that each case is different. I hope that you will be blessed as I was with a wonderful and caring staff. Best wishes to you as you continue on your cancer journey.

Torziv

https://csn.cancer.org/discussion/comment/1721143#Comment_1721143

Thank you for your feedback. I appreciate your kind words. If the radiation staff is as kind and caring as the simulation staff, I should be in good hands.