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Vaginal brachytherapy experiences?

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I was recently diagnosed with Stage 1a, Grade 2 endometrial adenocarcinoma.  Though my surgical pathology only found grade 1 cells, the prior pathology from my D&C found grade 2 cells, so my final grade is 2.  For this reason, along with other risk factors, they are prescribing brachytherapy, which is scheduled for 5 sessions over 3 weeks in March.

I am terrified.

I keep reading about burning urination and bowel, blistering of the vaginal wall, and vaginal stenosis which requires dilation therapy for a lifetime.  It's very overwhelming.

I also should note that I have had an extremely difficult recovery from the hysterectomy.  Though I had the DaVinci robotic laprascopic, my recovery has been slow and very painful. I am 4 weeks post-op now and am just starting to be able to pee and poop without pain, putter around the house and do things on my own.  They have told me that my T2  diabetes could explain a slower healing process.  So of course that worries me that the brachytherapy will be more difficult for me, as well.

I am very interested in everyone's experiences, side effects, and complications, if any.

 

Jill

 

 

 

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I had 8 brackys - 4 and then 4 more for recurrence. The actual treatment was a piece of cake and easy to handle. Few after problems but because I am also on blood thinners, had to give up on dilation. However, still having pelvics and even though some stenosis, not too bad. I am 80 so no need to worry about sex. Take openly with your radiation doctor - mine was the best!

Tamlen's picture
Tamlen
Posts: 264
Joined: Jan 2018

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.

oldbeauty
Posts: 276
Joined: May 2012

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

MAbound
Posts: 1086
Joined: Jun 2016

Hi, Jill,

Welcome to the club that nobody wants to join! 

I was diagnosed with endometrial adenocarcinoma stage 3a, grade three in 2016 and was treated with chemo, pelvic radiation with a vaginal boost (basically external brachy) and megace.

The big thing we all say here is that we are all unique and so what we undergo and experience on this journey has many variables as your experience with robotic surgery goes to show. Some of us breeze through it and others are put through the wringer.

Because there are so many decisions that we really are not qualified to make along the way, many of us advocate for getting 2nd or even 3rd opinions to those who have concerns and questions before they proceed. Radiation is a therapy many of us have feared and struggled with consenting to having done because it has risks to quality of life without any guarantee that the cancer will never recur. Some opt to save radiation for if they have a recurrence because you can only have radiation to a specific area once.

Given your issues with healing from surgery and because of your diabetes, you may have a circumstance that puts you at higher risk for adverse results than many of us and therefore I really think you would benefit from getting additional expert opinions from a source like a cancer center that you would have confidence in. It's a big decision and there are options.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

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!

Primavera's picture
Primavera
Posts: 195
Joined: Mar 2019

I was diagnosed with endometrioid adenocarcinoma, Stage 1a, grade 3, last year in March, at age 57.

I had a biopsy, done twice the same day. But I got news a month later that they didn't have enough tissue and had to do a D&C. The biopsy was not bad at all. The D&C report told me the grade.

I had a hysterectomy soon after and tumor was less than 1cm, located in the fundus, top portion of the uterus. Everything else negative and 6% myometrial invasion.

I healed well and had no pain and no problems at all after the DaVinci hysterectomy.

I was given 3 brachytherapies (two months later) because of the grade (3) and although the first session is very involved, they were easy to take. I had no side effects at all. I'm doing dilation, although not very often.

Eveything is going well for now. I'm being watched for two lung nodules (2mm and 4mm) and a liver lesion (maybe a cyst) of 3mm that they found prior to the operation. They've been stable for almost a year.

Hoping for the best for you.

Fridays Child
Posts: 185
Joined: Jul 2019

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!

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Thanks everyone!  It's so helpful to hear about everyone else's experiences.

Is there anyone else here who had difficulty with recovery from DaVinci surgery? I feel all alone in that regard... even my doctor has said I am among a very small percentage who have had such severe problems in recovery.

I would love to connect with anyone who also had difficulty recovering from surgery, who then went on to brachy.  My radiation oncologist seems to think it will be much easier for me to tolerate the brachy, compared to the surgery.

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Thanks everyone!  It's so helpful to hear about everyone else's experiences.

Is there anyone else here who had difficulty with recovery from DaVinci surgery? I feel all alone in that regard... even my doctor has said I am among a very small percentage who have had such severe problems in recovery.

I would love to connect with anyone who also had difficulty recovering from surgery, who then went on to brachy.  My radiation oncologist seems to think it will be much easier for me to tolerate the brachy, compared to the surgery.

Molly110
Posts: 145
Joined: Oct 2019

I hope someone on the board has had the experience you're looking for. My davinci surgery was an easy recovery. I almost failed out of chemo, and this discussion group was wonderfully helpful whenever I was looking for strategies to allow me to continue.

 

Take care.

 

Ribbons's picture
Ribbons
Posts: 75
Joined: Jan 2019

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.

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Thanks Ribbons -  I think I have exactly what you are describing - pelvic floor pain when sitting on the toilet.  The best way I can describe it is the sphincter muscles and nerves near the vaginal cuff are inflamed and sore, so the natural muscle contractions that occur when urinating, passing gas, or having a bowel are excruciatingly painful.  The pain goes away as soon as I stand up and the muscles relax. Believe me, I am NOT happy that you experienced this, but I have been feeling very alone with this symptom.

My concern is that I am 5 weeks post-op and the problem persists.  About a week ago the pain decreased from 10/10 to 5/10, but it is still very present and 5/10 still hurts badly.  I am so afraid it is going to be permanent, and that the brachy is going to further irritate whatever is going on there.

Sigh.

Kaleena's picture
Kaleena
Posts: 2036
Joined: Nov 2009

Hi Jill:

I was diagnosed with Stage 3A, Grade 2 endometrial adenocarcinoma back in 2005  (Yes, 15 years ago)  I was 45 years old.  I did have six months of chemo and then 3 HDR (High-Dose Radiation) brachytherapies.   Out of everything I have had, that brachytherapy was the easiest.  (Although it could be embarrassing at first).   Yes, 10 years later I had some scarring around my bladder and last year I did have a small recurrence at the vaginal cuff.  But to date, the only treatment I had was at the beginning, other than surgery.

Hang in there!   My best to you.

 

Kathy

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Thanks Kaleena,  I don't embarrass easily, thank goodness.

Can you clarify how they addressed the recurrance at the vaginal cuff without treatment?  Did you have a second surgery?

Mercorby
Posts: 31
Joined: Jan 2017

Hi Jill,

In April, 2015 I was diagnosed with stage 1b, grade 3 endometrial cancer.  I had the lapriscopy surgery and then brachytherapy about 6 weeks later.  I did not have any problem with recovering from the surgery.  The biggest side effect of the brachytherapy is vaginal dryness and the need for "stretching".  There is an excellent lubricant called Genneve which you can buy on Amazon.  The stretcher is no big deal, I just use it in the shower a couple of days a week - or have sex.  Yes, things have changed for me.  Sometimes, if I haven't used the dialator or had sex, I do feel a little pain during sex, but it is easily fixed.  The lubricant was the big game changer for me.

I know from experience that each time you get cancer, it takes a little bite out of you, even though is gets treated.  However, I have always worked at adapting and enduring.  Life is not exactly like it was before treatment or cancer, but it could have been something else that made the change.  Continue to be with people you love and do the things you love, even if it all has to be done a little differently.

During these crazy times, stay healthy,

Corby

.

Willow oaks
Posts: 12
Joined: Jan 2020

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.  

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I don't know what my exact dose will be. I know it is HDR, delivered every third day for 5 treatments total. 

Molly110
Posts: 145
Joined: Oct 2019

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.

 

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