Vaginal brachytherapy experiences?

I had 5 brachy over two weeks sandwiched in the middle of my chemotherapy and 4 months after my hysterectomy. After two rounds I developed bladder inflammation that felt identical to a UTI and that continued for about 4-5 months after treatment, then subsided completely.

As brachy ended I developed a problem with bowel urgency first thing in the morning and it has not gone away -- I cannot leave the house for work until I've gone, because when the need hits, I must be very near a bathroom. It's not diarrhea, just a weird sudden urgency. No one seems to think brachy could have caused this, but the proximity of the problem's arrival with the end of brachy is suspicious to me. No one seems to know what might help it, either. I've sort of developed a pattern of getting up extra early and getting that coffee machine on right away to start getting things going.

Brachy did make the vaginal wall "thinner" and the tissue feels sore still, 18 months later, even with regular dilation therapy. It's minor, though.

Would I do brachy again? Yes. The tradeoff seems worth it to me. I'm Stage IVB, but Grade 1, so in a different situation from you.

One thing I've learned with this diagnosis is that most every treatment decision is a big one because of the side effects and impact on quality of life. That can feel overwhelming at first, particularly in the first 6 months after diagnosis, when everything is happening fast and we're still coping with the tragic news of cancer. Over time, while the decisions are no less difficult to make, my experience has been that the mental and emotional components feel more manageable.

JillAndrea, if you click on my name you will be able to read my whole treatment plan, and I would recommend you copy and paste to update your profile with what you written, update as you want, as it will no doubt help others in the future.

As you would see, I had both 25 external and 3 brachy radiation treatments.  Gonna tell you, I never wrapped my head around radiation.  Never.  I think I was probably a bad patient.  It didn't hurt - no pain, just the thougth...but I did it because for me I wanted to do all I could to kill the beast.  

Radiation gave me fatique like I have never experienced.  I worked throughout all my treatment and I would sit at my desk and wonder how I was going to move at all.  At night I would fall asleep at 7 pm and that was it for the night.  Just like recovery from surgery, recovery from fatique took time.  It all took time.

Yes, stenosis is a side effect.  I started with a medium (some ladies in the past have described as a candlestick) dialator - and it was tough.  I worked it and finally got that accomplished when my gyn onc said to get a large.  ha!  Ok - back for more work.  

One very dear lady years ago had said, "use them everyday for 10 min" and that is what I did.  I think I was religious about it even when it felt burdomsome, and after all this time (it has been over 7 years now) I don't use it that often and don't have the issues I did when I first got them.

When women here say "they understand" - they do!  Radiation?  Freaked me out.  I hear ya sister!

JillAndrea, as noted, people have different experiences.  Yes, mentally it's just weird to think about the radiation. 

Some places they do the setup appointment and then you wait while they do their calculations, and then have your first treatment.  That can take a while.  In my case, they did the setup appointment and then had me come back a different day for the treatments.  I had 5 treatments about 3-4 days apart.

They will tell you to drink lots of water.  Do this.  It will help prevent bladder irritation. Also, I got permission to take probiotics to help prevent bowel issues, and I had none until the end of the treatment when there was a death in the family and I forgot them for a few days.  No subsequent problems.

Since I'm married, they didn't tell me to use dilators.  Have had no difficulties with pelvic exams. My brachytherapy was after my surgery in 2012, so it's been almost eight years.

Good luck with your decision and your treatment!

I had 3 rounds of brachytherapy, 3 weeks apart. Of course it was embarrasing to go through it, being on display like that! LOL But it was not bad. I didn't have any major side effects. Very very slight burning feeling, but not bad. I did feel pretty tired for a week after the 3rd one, but then I was OK. The reason I hate the dilator is that it is a reminder of what I went through with the whole cancer thing. I just want to put that all behind me but then I know I should be using the dilator and there we go! I wanted to add that I had some unusual problems after my hysterectomy, which was also robotic. I had the most horrible pain every time I had to sit on the toilet! So bad it made me throw up a couple of times. Took a few minutes for it to pass. I think it was the nerves that are in the pelvic floor that were inflamed and stirred up from the surgery. That only lasted for a few days thank goodness. Then I had the most unusual thing with my incisions. The two lower ones started leaking fluid, a lot! It was clear fluid that would soak through a bath towel in minutes! First one side did that for a couple of days and then the other side did it. It was just odd! When I told the Dr. she said it was lymphatic fluid and it had to drain somewhere so mine just decided to use those incisions. It was maybe even a good but thing just so weird. During surgery I did have a total of 22 lymph nodes removed, 11 on each side I think. They were all clear. Otherwise the surgery healed up pretty fast, I did have horrible gas for a couple of days though, I felt like an inflated beach ball.

Tamlen said:

Not so bad

I had 5 brachy over two weeks sandwiched in the middle of my chemotherapy and 4 months after my hysterectomy. After two rounds I developed bladder inflammation that felt identical to a UTI and that continued for about 4-5 months after treatment, then subsided completely.

As brachy ended I developed a problem with bowel urgency first thing in the morning and it has not gone away -- I cannot leave the house for work until I've gone, because when the need hits, I must be very near a bathroom. It's not diarrhea, just a weird sudden urgency. No one seems to think brachy could have caused this, but the proximity of the problem's arrival with the end of brachy is suspicious to me. No one seems to know what might help it, either. I've sort of developed a pattern of getting up extra early and getting that coffee machine on right away to start getting things going.

Brachy did make the vaginal wall "thinner" and the tissue feels sore still, 18 months later, even with regular dilation therapy. It's minor, though.

Would I do brachy again? Yes. The tradeoff seems worth it to me. I'm Stage IVB, but Grade 1, so in a different situation from you.

One thing I've learned with this diagnosis is that most every treatment decision is a big one because of the side effects and impact on quality of life. That can feel overwhelming at first, particularly in the first 6 months after diagnosis, when everything is happening fast and we're still coping with the tragic news of cancer. Over time, while the decisions are no less difficult to make, my experience has been that the mental and emotional components feel more manageable.

Hi Tamlen, For one year after chemo I suffered what you describe.  Every morning I had 3-5 waves of bowel urgency that cannot be ignored.  Mine was diarrhea.  I am convinced now that tthe diarrhea accounted for some of my "off" blood work that indicated possible malnutition.  The integrative physician I started working with told me I needed probiotics to repopulate my gut biome.  He told me to get one with 4-6 different cultures and give it a few weeks.  If no better, try a product with other cultures.  My health store guru recommended a "Thrive" product that he said delivered the most live cultures, and I used it for several months and the problem is gone.  I'm now in my second month of no product and my bowels are still in good shape.  I am gaining some weight, but I don't recommend diarrhea as a weight loss strategy.  I never had brachy therapy.  So I blame the chemo for the gut biome destruction (along with other life altering effects of chemo).  Just a thought.  Best wishes, Oldbeauty

Wonder how strong everyone‘s radiation doses are? Making a decisions now in radiation. I had surgery Feb 18. 2020 a bit more than 4 weeks ago. I am deciding on radiation and chemo and would like your input if you have time. I have an option of 5 vaginal treatments every other day for a week and half totaling 27greys or two higher dose treatments one week apart totaling 22greys. So each dose would be a double or slightly more grays but few total. It is a research studay that hopes to showcno worse side effects and no more increased reoccurrences than with 5 doses of 27greys. Do you know how many greys your high dose was? I’m told mine is low dose. I plan to do the radiation first then the 6 chemo treatment. I have grade 1A with 1mm uterine lining invasion of a 23mm myometrial thiickn and 4.5 cm tumor polyp. After radical surgery nothing else was found.  I have high grade serous carcinoma which makes reoccurrence more likely and that is why I’m looking at chemo and radiation.  

Willow oaks said:

Wonder how strong everyone‘s

Wonder how strong everyone‘s radiation doses are? Making a decisions now in radiation. I had surgery Feb 18. 2020 a bit more than 4 weeks ago. I am deciding on radiation and chemo and would like your input if you have time. I have an option of 5 vaginal treatments every other day for a week and half totaling 27greys or two higher dose treatments one week apart totaling 22greys. So each dose would be a double or slightly more grays but few total. It is a research studay that hopes to showcno worse side effects and no more increased reoccurrences than with 5 doses of 27greys. Do you know how many greys your high dose was? I’m told mine is low dose. I plan to do the radiation first then the 6 chemo treatment. I have grade 1A with 1mm uterine lining invasion of a 23mm myometrial thiickn and 4.5 cm tumor polyp. After radical surgery nothing else was found.  I have high grade serous carcinoma which makes reoccurrence more likely and that is why I’m looking at chemo and radiation.  

I had uterine papillary serous cancer (my acupuntcurist has me using the past tense for healing reasons), also stage 1, and my brachytherapy was four sessions, a week apart, with each one lasting slightly longer than the one before it, and the final one lasting about 5 minutes. I don't have any idea about how much radiation. My VBT was midway through the chemo and concurrent with it. I dreaded it and was surprised and grateful by how easy it was for me. No permanent side effects so far, and my last one was in early December. I hope your experience is good, whichever dose you decide on.