Vaginal Radiation (high dose brachytx) for grade 3 , stage 1 endometrial adenocarcinoma-am anxious

Hi I'm new to the site...referred by a friend. I had hysterectomy in Dec for grade 3, endometrial adenocarcinoma, with 40%invasion into uterine wall and positive for lymphatic space invasion. Due to errors in initial path reports I had a second surgery in January to do lymph node dissection which was negative. Although stage 1, I am in the intermediate high risk return category. I will start high dose vaginal brachytx on Tuesday March 1st and am anxious about after effects. I'm wondering how it was for other women? What can you tell me?

Is there anything I should be doing to prepare to limit stenosis? Lotions? Dildos? I'm still pretty tender from hysterectomy, especially at the top of the vagina so sex is not easy but I want to do whatever I can to have an active sex life?

The MD describes brachy as "well tolerated" "not too big a deal", but he's a guy and I've had a lot of surprises and a couple medical errors and would love to hear from other women who have been there. Thanks much for anything you can tell me.

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Hello,
    Sorry to hear about

    Hello,

    Sorry to hear about your diagnosis and recent surgery, but I am glad you found this site where you will find a lot of help.

    As with any surgery, I believe there is a six-week "wait" period before having sex. The vaginal brachy is interesting.

    With regard to the brachy, you really won't feel anything during the treatment process. The only time consuming process is the fitting. They try to fit the vaginal instrument to you which is at times a little uncomfortable and calculate where to place it. At that time your radiologist should give you or order you a vaginal dialator to use daily after you are done treating. My radiologist suggested using the dialator 10 minutes a day or to have sex at least three times a week. Also, at my session, they take your picture (of your face) to put on the file. During treatment, they put the instrument in you and you lay there. (Some places put on music) So you lay there, listen to music, then you are done.

    I had 3 high dose brachys only. No pelvic radiation due to my severe scarring from endometriosis.

    I hope this helps. Again, welcome to the site.

    Kathy
  • minniejan
    minniejan Member Posts: 88
    Kaleena said:

    Hello,
    Sorry to hear about

    Hello,

    Sorry to hear about your diagnosis and recent surgery, but I am glad you found this site where you will find a lot of help.

    As with any surgery, I believe there is a six-week "wait" period before having sex. The vaginal brachy is interesting.

    With regard to the brachy, you really won't feel anything during the treatment process. The only time consuming process is the fitting. They try to fit the vaginal instrument to you which is at times a little uncomfortable and calculate where to place it. At that time your radiologist should give you or order you a vaginal dialator to use daily after you are done treating. My radiologist suggested using the dialator 10 minutes a day or to have sex at least three times a week. Also, at my session, they take your picture (of your face) to put on the file. During treatment, they put the instrument in you and you lay there. (Some places put on music) So you lay there, listen to music, then you are done.

    I had 3 high dose brachys only. No pelvic radiation due to my severe scarring from endometriosis.

    I hope this helps. Again, welcome to the site.

    Kathy

    Hello,
    I was diagnosed

    Hello,

    I was diagnosed with UPSC in December, and recently started brachytherapy, three treatments as well. I have had two treatments so far. To add to Kathy's post about the actual brachytherapy, I was "wanded" before and after each treatment by a physicist with a Geiger counter. That was a surprise I did not know about. And each time they place the cylindar for another treatment, they have to make certain it is in the correct spot, and had to move mine in and out a couple of times and take X rays each time to make certain it was correct. Which though uncomfortable, I was glad they are that precise. And the actual treatment itself is easy.

    I was told I would be taught to use a vaginal dilator after the last appointment.

    I was also told no sex of any kind during my chemotherapy treatments. I am not certain if you are going thru chemo.

    Best wishes to you. MinnieJan
  • Lisa 00
    Lisa 00 Member Posts: 134 Member
    Brachy side effects
    Meerkat,
    The procedure itself wasn't bad. Search the term brachytherapy in these forums and you will find some other discussions. I don't know if they do the brachy that takes a long time any longer, but some women have had to be admitted to a hospital and have the radioactive material in there for hours. While others have the procedure which takes about 10 minutes once the 'wand' is in place. Hopefully you will have the short, easy procedure.

    Side effects for me were dryness. Very dry. Apparently radiation kills glandular tissue which supplies the vagina with moisture. I have used coconut oil and a vaginal syringe which has helped a lot.

    Also, dimensional changes. The vagina will scar down from the radiation. It will get narrower and shorter if you don't use the dilators or have sex regularly. But, apparently, if you do do something regularly, it will stave off the shrinkage. I have not done either and my vagina is now about 2.5 inches long. Of course, you will need to use lubricants with any devices.

    Other than that, I think the doc mentioned some potential bowl issues and I think I remember having diarrhea that continued for a couple of weeks after the brachy was done. Good luck!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Lisa 00 said:

    Brachy side effects
    Meerkat,
    The procedure itself wasn't bad. Search the term brachytherapy in these forums and you will find some other discussions. I don't know if they do the brachy that takes a long time any longer, but some women have had to be admitted to a hospital and have the radioactive material in there for hours. While others have the procedure which takes about 10 minutes once the 'wand' is in place. Hopefully you will have the short, easy procedure.

    Side effects for me were dryness. Very dry. Apparently radiation kills glandular tissue which supplies the vagina with moisture. I have used coconut oil and a vaginal syringe which has helped a lot.

    Also, dimensional changes. The vagina will scar down from the radiation. It will get narrower and shorter if you don't use the dilators or have sex regularly. But, apparently, if you do do something regularly, it will stave off the shrinkage. I have not done either and my vagina is now about 2.5 inches long. Of course, you will need to use lubricants with any devices.

    Other than that, I think the doc mentioned some potential bowl issues and I think I remember having diarrhea that continued for a couple of weeks after the brachy was done. Good luck!

    Just a word of comfort from someone 2 years out from brachy...
    I had my brachy in the summer of 2009, so I'm almost 2 years out from it. Using a dilator is no more intrusive or wierd than inserting a tampon, so please don't worry about adding that 10-minute task to your morning routine. If your sex life is important to you, I suggest you dilate 10 minutes each day and use the same SurgiLube they are probably using at your clinic (available online from Amazon). It's really no big deal at all, so don't blow it up in your mind as something awful. If you had tissue assays done and are ER- and PR-, you might also ask your gyne-onc for a prescription for a hormone cream that does a great job of improving elasticity. I personally wouldn't use it if I was ER+ or ER-, although my gyne-onc would allow it as a 'quality of life' trade off even if I did test positive for estrogen or progesterone receptivity. But if you are ER- and PR-, using the hormone cream is a no-brainer; DO IT! But do make daily dilator use a part of your routine; after all who couldn't use an extra 10 minutes of dosing in bed each morning anyway? HA! This is really a "use-it-or-lose-it" situation because of the possibility of scar tissue. Be pro-active and you'll be fine.

    No one EVER told me "no sex" during chemo treatments, EVER, and I've taken a lot of different chemo drugs. Even on the days between bracytherapy treatments, if it doesn't hurt and you want to, I'm pretty sure it's okay, but ask if you are unsure.
  • sleem
    sleem Member Posts: 92
    2 years after heads up
    My doctor recommended all that I've read on this subject in this chat room. I will tell you that about 1 year later after my last chemo, I was real scared when I noticed vaginal spotting of blood after sex. Since this can be a sign of return I was quite upset...
    I had not been informed that the skin is fragile from radiation/and/or surgery there... that this can cause bleeding/spotting after sex. So, please discuss this with your doctor so if it happens to you...there will be info for you on what to do. It was horrible when it first happened & did not know this could happen. I still have some spotting at times. I always let my dr. know.
    Hang in there...each month goes by things get better...the time between having sex you might have tightness return.
    UPSC-me
  • meerkat
    meerkat Member Posts: 3

    Just a word of comfort from someone 2 years out from brachy...
    I had my brachy in the summer of 2009, so I'm almost 2 years out from it. Using a dilator is no more intrusive or wierd than inserting a tampon, so please don't worry about adding that 10-minute task to your morning routine. If your sex life is important to you, I suggest you dilate 10 minutes each day and use the same SurgiLube they are probably using at your clinic (available online from Amazon). It's really no big deal at all, so don't blow it up in your mind as something awful. If you had tissue assays done and are ER- and PR-, you might also ask your gyne-onc for a prescription for a hormone cream that does a great job of improving elasticity. I personally wouldn't use it if I was ER+ or ER-, although my gyne-onc would allow it as a 'quality of life' trade off even if I did test positive for estrogen or progesterone receptivity. But if you are ER- and PR-, using the hormone cream is a no-brainer; DO IT! But do make daily dilator use a part of your routine; after all who couldn't use an extra 10 minutes of dosing in bed each morning anyway? HA! This is really a "use-it-or-lose-it" situation because of the possibility of scar tissue. Be pro-active and you'll be fine.

    No one EVER told me "no sex" during chemo treatments, EVER, and I've taken a lot of different chemo drugs. Even on the days between bracytherapy treatments, if it doesn't hurt and you want to, I'm pretty sure it's okay, but ask if you are unsure.

    Thanks for the information
    Thanks for the ideas...I already have shortening of the vagina from surgery and will definitely do what I can to use it...don't want to lose it. I hadn't thought of asking about the hormone cream...one more brachytx to go. My radiologist said there were no restrictions re: sex during brachytx, although it hurts it new ways. If the cancer never comes back, it will be worth it. Here's hoping.
  • meerkat
    meerkat Member Posts: 3
    sleem said:

    2 years after heads up
    My doctor recommended all that I've read on this subject in this chat room. I will tell you that about 1 year later after my last chemo, I was real scared when I noticed vaginal spotting of blood after sex. Since this can be a sign of return I was quite upset...
    I had not been informed that the skin is fragile from radiation/and/or surgery there... that this can cause bleeding/spotting after sex. So, please discuss this with your doctor so if it happens to you...there will be info for you on what to do. It was horrible when it first happened & did not know this could happen. I still have some spotting at times. I always let my dr. know.
    Hang in there...each month goes by things get better...the time between having sex you might have tightness return.
    UPSC-me

    helpful info about spotting
    Hi thanks for the information re: spotting. I'm finishing my 3rd brachytx this week and when I have sex or use a dilator, I am spotting at times...I hope it goes away. It's hard to associate sex with tissue damage...and this is all new for me so I'm hoping to get a little more hardy about the surprises.