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Brachytherapy

Doo57
Posts: 9
Joined: Aug 2018

Hi all you beautiful women!  I’m new to this so hope i’m doing it right.  I was dx with stage 1a/grade 3 uterine cancer. I’ve had complete hysterectomy with nagative lymph nodes. I’m to have 3 rounds of vaginal brachytherapy.  Was wondering if you could share your experiences with vaginal brachytherapy with me?  The side effects sound scary.  Thank you so much in advance. ❤️

 

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Hi Doo57. There is a thread titled 'Let's Talk about radiation' that I think you will find very informative and helpful. Lots of discussion on brachytherapy there. Everyone is different but there are many things that are similar. I had 5 doses of brachy 2.5 years ago and I'm doing well. I find myself not using the dialators as often as I should these days but so far no issues. 

Glad you found us and sorry you had to. I think you will find the women here supportive, helpful and caring.

Love and Hugs,

Cindi

Doo57
Posts: 9
Joined: Aug 2018

Thank you for your reply Cindi!  So happy tonhear you are doing well.  Can you please tell me how i get to that thread? 

Love and hugs to you too!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

Here is the thread - you can click on the link:  https://csn.cancer.org/node/296985

Doo57
Posts: 9
Joined: Aug 2018

Thank you!  

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

Go up to the top of the Uterine Cancer page and type in Let's talk about radation in the search for title and hit search.  It should come up.

 

My question to you, if it is a Grade 3 type cancer why are they not doing chemo treatment and just radiation?  I have a grade 3 cancer MMMT (for short) and had 6 rounds of chemo but no radiation and that was 7 years ago.  I am still NED.

Doo57
Posts: 9
Joined: Aug 2018

according to the team of 4 Obgyn Oncologists, since it was stafe 1a and all lymph nodes were clear and it had not gone outside the wall (20%) the guidelines say radiation as chemo would be over kill. What stage were you?  So happy to hear you are doing well. 

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

The tumor in my uterus was a 1a but because 1 lymph node had 2 microscopic cells (per my dr) that made me a stage 3C1.  My case also went to a board so they decided on the chemo treatment and save the radiation in case anything popped up later.  I know that another lady in my work place was found to have overian cancer at the same time I was going.  She went to the same cancer center here in Dallas and her's was a stage 1, had surgery then had chemo and no radiation.  So different things for different types.  Each and every cancer is different just as each person is different.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2616
Joined: Mar 2013

Doo57, there are different types of uterine (endometrial) cancer.  The doc refer to one as the 'typical garden variety type', others are more aggressive in nature.  Treatments differ based on the different cancers. 

As Trish said, everyone is different.   

MAbound
Posts: 891
Joined: Jun 2016

Doo57, I have the garden variety of uterine cancer...endometrial adenocarcinoma. It's the hormonally driven and most common form of uterine cancer. It's considered less aggressive than UPSC, MMMT, clear cell, etc., but it's that grade 3 that really increases the risk for recurrence down the road and why chemo or progesterone therapy might be options to get 2nd opinions on before proceeding with radiation if this is the kind of uterine cancer you have. I can't speak to treatment if you have one of the other varieties. I'm a grade 3, stage 3a.

I'm kind of with TxTrisha on this as a result. Radiation is a one time deal and only treats what it's aimed at. You can't have radiation to the same area twice if you have a recurrence, so it might do more good to treat a high grade cancer systemically with chemo as insurance against recurrence to start with and save the radiation for if there'd actually be something to aim at.

When I was struggling with whether or not to go ahead with radiation after chemo, I got some very good advice about 3 compelling reasons to have it. One was greater than 50% myometrial invasion, lymphovascular invasion, and origin of the cancer in the lower part of the body of the uterus. You don't seem to have the first two and you don't mention anything about the third.

Did they test for Progesterone or Estrogen receptor strength (factor for progesterone therapy)?

It's very, very good that they caught your cancer at a Stage 1, but it's that grade 3 that's concerning and now is the time to get any stray cancer cells that might have escaped during surgery to make sure this beast doesn't come back to haunt you later. Systemic treatment would be better for that. That's my 2 cents worth, but feel to ignore as I'm not the expert your doctors are.

It never hurts to get 2nd and even 3rd opinions when facing treatments with potentially serious side effects or skipping them and risking recurrence. It's a Solomon's choice you're facing and most of us have had to struggle with it and take that leap of faith that we're doing the right thing when we make our decison. I'm sorry you are facing any treatment beyond the surgery (that's hard enough!), but rejoicing with you that it was found as early as it was. 

Best wishes, Pat

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

Thanks Pat for explaining much better than I did. I know that my gyn onc dr gave me options, clinical trial or go with her suggested chemo treatments. The clinical was either carbo/taxol or (the one I hear) is harsh Ifosfamide (?) And another chemo. She gave me the paperwork on the trial and told me to go home read it, study it, research it then let me know my decision.  I did. I chose to go with the carbo/taxol.  She said no radiation  was called for. I only questioned it because so many women on here had it.  She told me that the NCI was rethinking giving both up front considering after survery there is not one place it can be pointed at and has to be given to the whole pelvic area, which has the potential of damaging other organs and bones. I followed her advice. Still here 7 years later.  Guess she knew what she was talking about for me. I go Monday for my 7 year check up with her. Well see how I am doing. Thanks again for your great explanation. trish

JMJJ3
Posts: 5
Joined: Sep 2018

Hi everyone, I was recently diagnosed with uterine cancer. I am 6 weeks post-op from my total hysteretomy. I am 53, in good health, so this was a shocking diagnosis as it is to everyone im sure. my cancer is stage 1, grade 3. My Gyno said I am very lucky because the tumor had not penetrated the uterine wall/muscle. everything else was clear, including the lymph nodes. I have just come from my consult regarding the Brachytherapy i will have starting in a couple of weeks. They want me to do 2xweekly for 3 weeks so a total of 6 low dose internal brachytherapy. This has all happened so fast, I had a uterine biopsy after an abnormal pap smear,(i was still getting my period although it was becoming very irregular so i was assuming i was going through the normal end of periods), then  2 weeks later I was scheduled for surgery. I am grateful I found this forum bc I am trying to get as much information I can about what has happened and what is to come. I am looking for any advice/info about this treatment. They went over how it is done, what could be the side effects but I want to know from someone who has gone through it themselves. Im sorry this is so long, just feeling a lttle overwhelmed today.  I am having a horrible time with my back, I have a horrible problem with Sciatica since the surgery and they think it is a result of the positioning you are in during surgery. It has really been more of an issue than the surgery itself. Any feedback/advice would be so appreciated!!! 

abrub's picture
abrub
Posts: 2099
Joined: Mar 2010

We considered brachytherapy for me following a vaginal recurrence of my appendix cancer.  However, the value was unknown; the potential complications not worth it, and we didn't do it.  You need to weigh what it will get you versus what it will take away.  For me, my husband and I are still sexually active, and I didn't want to lose a functional vagina for very uncertain benefits.  Each case and each person is different.  The ultimate decision is yours.  For example, I have a recurrence growing in me now; just had my scan and it's grown.  However, I'm comfortable (as is my dr) staying on watch and wait, tho he'd remove it if I wanted.  Another friend in a similar situation was advised to watch and wait, but she's insisting she wants her growth out now.

No, I haven't had brachytherapy.  I've read about it, and personally don't know that I would do it.  However, what is right for me is not necessarily right for you.  Ask questions; get information.  People here will jump in with their experiences.

Alice

JMJJ3
Posts: 5
Joined: Sep 2018

Thank You Alice!! Im concerned now because I had my first low dose brachytherapy traetment on Friday. I have 5 more to go, each for 4 minutes. My Doctor said because my tumor was considered aggressive it would really decrease the chance of recurrance. there are so many things that I realize now I wish I did more research on. everything happened so fast between diagnosis, and surgery it still hasn't even sunk in yet that I have cancer. It is even wierd to type that!! I had a back injury from the surgery, and I honestly think the agony I have been in from that has overtaken everything else. Even when getting my first treatment, everything revolved around my back and how I would handle lying still for the hour the first appointment took. I did much better than I thought I would, didn't have any spotting after or pain and no burning when I pee like they said I might. My and my husband have a great sex life so it is very worrisome reading some of these stories. I can say that although the experience wasn't pleasant, it wasn't horrible either. The staff and my Doctor were so caring and considerate, I will most definately tell anyone who wants to know the step by step process with all details if they want to know how the first appointment goes. Thank You again!!! 

abrub's picture
abrub
Posts: 2099
Joined: Mar 2010

Ask the dr to decide its value to you.  Having had just one session, the damage, if any, should be minimal.  You are responsible for deciding on what treatments you will have.  I quit my chemo after 7 of a planned 12 cycles; it wasn't worth it to me (and in my case, I don't think those additional 5 sessions would have prevented my recurrence.)  You're not too far into this to ask questions.  My goal is to encourage educated decisions that are right for each individual.

Alice

CheeseQueen57's picture
CheeseQueen57
Posts: 821
Joined: Feb 2016

Just curious, how many who got brachytherapy remained sexually active? My answer is sadly no. 

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

No

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

Yes, and even better than before :) 

Northwoodsgirl
Posts: 559
Joined: Oct 2009

Dearest CheeseQueen, Thanks for asking this question. You know how on some health form they ask if you are sexually active or the Dr. asks the question after radiation. Well, I lied and said yes I was sexually active because I didn’t want to lose hope that the cancer treatment hadn’t taken that from me. But guess what....it did.

Brachytherapy created such thin vaginal tissues that sexual intercourse is no longer something I can have. I bleed very easily from any amount of friction in my vagina. I hate that stupid “dialator”. The least they should give us is a vibrator after all we have endured (LOL). The insurance company would consider that a “convenience item” and not pay for it but maybe compliance with using the dilator would improve and thus pelvic exams would be easier. 

It’s more than a decrease in lubrication from loss of estrogen from the total hysterectomy or menopause or external radiation. It’s like the vaginal walls have been “toasted” by a blowtorch.

There is no lubricant on the market that can help the damage done to the sensitive mucous membranes of my vaginal walls! Just saying....and I am almost 10years post treatment.

Lori

CheeseQueen57's picture
CheeseQueen57
Posts: 821
Joined: Feb 2016

I assume from the lack of “yeses” to this question that many of us lost our sex life after brachytherapy.  But were we really informed this would happen?  We’re told use the dilator and all will be well. All was never well for me again and the brachytherapy was preventive. I feel I was not informed what was at risk and frankly am angry. Of all I suffered I think this wasn’t necessary. I’m just curious if there’s anyone out there for which the dilator preserved your sex life. 

abrub's picture
abrub
Posts: 2099
Joined: Mar 2010

The radiologist who wanted to do the brachytherapy saw me as a vagina with possible cancerous implants that he wanted to destroy - that is his forte.  My surgeon sees me as a person with cancer, and didn't feel that the risks of brachytherapy were worth it to me.  As it turned out, brachytherapy would not have prevented my next recurrence, that wasn't vaginal, but peritoneal by the cecum.  

It's extremely important to understand what a given treatment will/might do for you, both positive and negative.  The negatives outweighed the positives, and I'm very glad I opted out of brachytherapy.

Jairoldi's picture
Jairoldi
Posts: 217
Joined: May 2017

My radiologist said she could get the job done without brachy. I only had external radiation. Stage 3B,Serous with a positive margin at the vaginal cuff.

 

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

I often have second thoughts about not having had brachy (I had external only). I didn't have cervical involvement but I did have lower uterine segment involvement, plus a polyp prolapsing through the cervix. 

I know many do well after brachy, and it may ultimately have been a real benefit to them. But they just don't really know yet. They've only shown that it reduces local recurrences, but not that it increases survival. My radiation onc repeated that more than once. Same with the external. Maybe i would have done ok with the brachy, but maybe I really dodged a bullet. The risks are real.

So i often also wonder if the external rads were the right choice.  It's hard to say no when you're in the middle of it all and scared and overwhelmed. I'm 3 months out from finishing rads and wonder if the side effects will improve or be permanent. They could be worse, and I'd take them in a heartbeat over dying. But the ole guts ain't normal anymore either. I'm going to get a colonoscopy next year (turning 50), and it will be interesting to hear about what they see.

I have read that they have no proof about the dilators working either. Study data is conflicting or insufficient.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

No, for sex, but it had been difficult even before. That might have been my first sign of cancer, but I thought it was probably part of menaupause . I hadn’t used any estrogen even thoug my gynechologist had prescribed it. I was too paranoid about blood clots as I had had one before. Alas no sex,but my husband has prostrate cancer and is on hormone treatments so it wouldn’t be happening anyway. I hated internal radiation but was willing to do anything to try to keep the cancer from coming back.

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

when I was first going for my High Dose brachytherapy in 2006, I asked what the long term effects were.  At that time they didn’t know.  All I was told was that I shouldn’t get pelvic (external) radiation because the effects would be more detrimental to me due to scaring so they opted with the HDR brachytherapy.  Well 12 years later I can tell you some of the long term effects.   Around 2014 (8 years after treatment) one of my scans revealed that I had on my left side hydrouretonephrosis.   It was caused by a blockage near my bladder which was caused by the radiation.  I had to get a ureter stent in which needed to be replaced or exchanged every 3 months.  That meant going under anesthesia every 3 months.  I did this for a year and a half until I was tired of doing that and met with a urologist who indicated he could reimplant my ureter into my bladder and bypass the blockage.  I had that done in Dec of 2017.  I started having pain and my PET scan showed some positive factors around my vaginal cuff but because I had a biopsy in 2014 they believed it was negative and would just watch it.  However I started having pain daily and at the beginning of 2018 I had another biopsy done at a different facility (left my gun/onc - long story) and they took it from a different angle and this one was positive.  It was at my vaginal cuff.  So I had surgery in April this year and again in June   

 

BluebirdOne's picture
BluebirdOne
Posts: 212
Joined: Jul 2018

Hi all.  I had the full monty surgery July 26, from which I have recovered well. I am going for my consulation with the radiology oncologist this week. The are recommending three sessions, two days apart, of brachytherapy for my stage 1a grade 3 serous cancer.  This will be sandwiched in between my 2nd and 3rd chemo, which I have tolerated well so far. I reread the entire old thread about radiation and all that I could from current threads. I am torn whether or not to get the radiation. I had only microscopic cells remaining in the uterus, but I have LVSI, everything else was negative for cells. My other large concern was that when my incompetent gyne did my hysteroscopy, he assumed that what ended up to be a large cancerous tumor was a fibroid (assumption made with a magic 8 ball as he had no pathology) and he decided to remove it. The large tumor was partially removed (his notes read that he was sorry he didn't get it all, but he took as much as he could) and subsequently I was bleeding for two weeks post hysteroscopy, and how many cancer cells were bled into my vagina and other parts no one knows. Which brings me back to the brachytherapy. Had the tumor remained intact I probably would not have the brachytherapy, but I am concerned that there are cancer cells that won't be killed with the chemo. The NCCN guideline is with 1a you can have surgery, chemo but either radiation is optional. I am going to discuss this situation with my team in a few days, but I think I may have to have the brachytherapy, regardless.  

 

Denise 

Northwoodsgirl
Posts: 559
Joined: Oct 2009

Denise- Wow you have had a lot to consider!

Brachytherapy seems prudent especially since you had the tumor cut and removed by your GYN who thought it was a fibroid! I wonder why considering the other presentation of your anatomy/ thickening of vaginal walls that the doctor didn’t just leave the growth for removal via hysterectomy? 

Glad you found a more competent GYN/ ONC. Brachytherapy has had some improvements since I had it in terms of helping to make it more tolerable with lidocaine numbing oigel and maybe something for anxiety.  

Lori

BluebirdOne's picture
BluebirdOne
Posts: 212
Joined: Jul 2018

He never took me or my diagnosis seriously, made me wait 5 weeks extra because he was going on vacation, and even after the hysteroscopy he was talking out of his *** (sorry, I really hate this guy) that he got most of the fibroid, (my procedure was never supposed to be fibroid removal, just a d&c) and all was well. BEFORE ANY PATHOLOGY HE WAS BLATHERING ON AND ON.  When the pathologist rushed my results the incompetent doctor called me, shocked at the dx. That was when the realization hit my husband and I that he partially removed, destroyed, a very large serous tumor. I was horrified, as I has post procedure bleeding (cancer cells, I am sure) for two weeks. So I would not be surprised if I have a recurrence, it will be in the vaginal area. Ladies beware! So many bad and incompetent doctors. I won't bore you with my cardiologist horror story. 

 

On the bright side, this incompetence pushed me into seeking the best treatment possible closet to home which is Mayo in Rochester, and I am very, very satisfied at the major difference in the approach to my treatment. They are so professional, kind, caring and they will listen to every question you have for as long as you have questions. I am still in the middle of treatment but I do have peace of mind about my team which removes some of the stress of this disease. Trust, but verify. Another plus is that I have been treated almost exclusively by women. 

Denise 

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

what an absolute horror story. So glad you are getting quality follow up. I watched the Ken Burns program about the Mayo this week and was so impressed. 

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