Brachytherapy

Doo57
Doo57 Member Posts: 9

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. ❤️

 

 

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Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Hi Doo57. There is a thread

    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
    Doo57 Member Posts: 9

    Hi Doo57. There is a thread

    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

    Thank you for your reply

    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!

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Go up to the top of the

    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.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,060 Member
    Doo57 said:

    Thank you for your reply

    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!

    Here is the thread - you can

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

  • Doo57
    Doo57 Member Posts: 9
    edited August 2018 #6

    Go up to the top of the

    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.

    according to the team of 4

    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. 

  • Doo57
    Doo57 Member Posts: 9
    edited August 2018 #7

    Here is the thread - you can

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

    Thank you!  

    Thank you!  

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Doo57 said:

    according to the team of 4

    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. 

    The tumor in my uterus was a

    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
    NoTimeForCancer Member Posts: 3,060 Member
    Doo57, there are different

    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
    MAbound Member Posts: 1,164 Member
    Radiation vs Chemo

    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
    txtrisha55 Member Posts: 693 Member
    MAbound said:

    Radiation vs Chemo

    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

    Thanks Pat for explaining

    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
    JMJJ3 Member Posts: 5
    edited September 2018 #12
    Brachytherapy uterine cancer

    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
    abrub Member Posts: 2,174 Member
    JMJJ3 said:

    Brachytherapy uterine cancer

    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!!! 

    Know what you are getting into

    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

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    Let’s do a tally

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

  • Kaleena
    Kaleena Member Posts: 2,083 Member
    edited September 2018 #15

    Let’s do a tally

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

    No

    No

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Brachytherapy and it’s affect on sexual intercourse

    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
    CheeseQueen57 Member Posts: 933 Member
    Dirty Little Secret.

    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
    abrub Member Posts: 2,174 Member

    Dirty Little Secret.

    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. 

    We're not informed, which is why I brought that up.

    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
    Jairoldi Member Posts: 221
    My experience

    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
    LisaPizza Member Posts: 356 Member
    I often have second thoughts

    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.

  • Cass83
    Cass83 Member Posts: 151 Member

    Let’s do a tally

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

    Yes

    Yes, and even better than before :)