Please just reply if you have had 5+ Bracky

Donna Faye
Donna Faye Member Posts: 427 Member
in Uterine/Endometrial Cancer #1

I had to have 2 Brackys - 4 in 2017;4 more in 2018 so vaginal wall is very scarred. I am also on blood thinners for another year. Dilator causes bleeding to the point that I am considering not doing it. I have talked to my gyn 0nc and she says if that is what I want to do, she will depend on scans, etc. for spotting recurrence . The hematologist is reducing the 5 mg. to 2.5mg in hopes that will reduce bleeding.

I have an app't. with my Rad doc  ASAP to also get his opinion. I am not sexually active ( thank heaven) and at almost 79 wonder if I could just let it close up. 

If any of you have not dilated or had sex - did you get the closed vagina and if so - WHAT?

I have read a number of medical papers and it seems there is no definate agreement world wide on how dilation helps or not. Uterine cancer is a pain in the vagina to say the least. 

So Ladies, advice please but only if you have played this inning.  Thanks!!!

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,515 Member
    #2
    Faye, not sure how many

    Faye, not sure how many people have had 5, as 3 is the "typical" number.  That is thin tissue, and having only had 3, I still see pink 6 years later.  I can't imagine 8! I know it is scary and I can see how you have issues - plus blood thinners?  Holy crap.  I didn't want to leave your post hanging, I just don't know any current members who have had this much, but I don't know for sure. 

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #3
    Thanks NTFC

    I was just hoping I'd fine one or two as I know my case is rare. That's why I stated the title as I did. Even my docs don't have any one like me ( not good in this caseSmile). So guess I am going to have to move forward as best I can. I am hoping the rads doc who I love and see next week might have some ideas. Maybe a different type of dilator. Anyway, will keep soldiering on. Thanks so for all your work and support. Wish we could have a meet up party for all the ladies on this site!!  Hugs! PS the pic is when I was 15!

  • cmb
    cmb Member Posts: 1,001 Member
    #4
    Check Old Posts Recap

     

    I just posted a recap of posts related to brachytherapy since one of the responders on that thread (Tamlen) had 5 sessions of internal radiation.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #5
    3 here

    i had 3 HDR brachytherapy sessions.  The rad/onc at that time said they could not tell what the long term effects were.  My brach was in August of 2006.  I only used the dilator for maybe a month.  Sex wasn’t comf so quit that    So I would say from 2007 until the present time it didn’t close up.  Thickened some.   The only concern would be getting a good PAP because of scarring.  My most recent surgery found a very small positive tumor around my vaginal cuff

     

    the biggest side effect for me was the ureter blockage causing me to get a stent.   I had to go every 3 months for a stent replacement.  did that for over a year but it was getting difficult for me as I was not feeling myself as time went on.   I eventually had a ureter Reimplantment (They cut by the blockage and reinserted the good part of the ureter into another part of my bladder).  I didn’t need a stent after that.  

     

    Also lots of scarring.

     

  • Tamlen
    Tamlen Member Posts: 343 Member
    #6
    I had 5

    I had 5 brachy over a two-week period, halfway through chemo. My rad onc preferred 5 slightly-lower-than-high-dose to 3 high-dose brachy.

    I used the dilator bi-weekly for several months, then slowly reduced it to virtually none now. I've had no problems with vaginal scarring, pain, or bleeding, fortunately. The side effect that was a problem for me was UTI-type burning and urgency (no UTI, though) for a few weeks, which gradually receded and went away. I'm 20 years younger than you and don't take any meds other than an aromatase inhibitor; maybe age made a difference for me.

    I hope you get some answers and relief soon!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #7
    Tamlen said:

    I had 5

    I had 5 brachy over a two-week period, halfway through chemo. My rad onc preferred 5 slightly-lower-than-high-dose to 3 high-dose brachy.

    I used the dilator bi-weekly for several months, then slowly reduced it to virtually none now. I've had no problems with vaginal scarring, pain, or bleeding, fortunately. The side effect that was a problem for me was UTI-type burning and urgency (no UTI, though) for a few weeks, which gradually receded and went away. I'm 20 years younger than you and don't take any meds other than an aromatase inhibitor; maybe age made a difference for me.

    I hope you get some answers and relief soon!

    I also had 5 lower dose

    I also had 5 lower dose brachy treatments over a 2 week period. That was 3 years ago. I was very faithful with the 2 Xs a week dialator and/or sex for the first 2 years. After that, I have gotten lazy and do not use the dialator any longer. Still have sex but not on any kind of schedule. All depends on how busy we are with other things of interest! So far so good. No issues.

    Also, my radiologist told me that he had to tell me the dialator would be required for life but that he had seen many women who stopped it after 2 years that had zero issues. Just thought I would throw that in for further consideration.

    Good luck with whatever you decide to do! 

    Love and Hugs,

    Cindi

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #8
    Like what I hear

    Thanks everyone for your input. My rad was low dose but because they had to come back a year later, the doc was very afraid I would have more scarring. Hearing that many of you stopped and had no bad effects makes me hopeful. I was not told to dialte after the first 4; only after the second 4 a year ago. Hope to hear from more.xoxo

  • Soup52
    Soup52 Member Posts: 908 Member
    #9
    Ok I know you only wanted

    Ok I know you only wanted those with 5 treatments but I’m commenting after 3. I only used the dualator very infrequently and I haven’t used it at all recently and no sex as husband has prostate cancer plus sex is painful and I hadn’t had it often before surgery. Last Dr appointment with PA felt it wasn’t necessary. Vagina is not totally closed just rather narrow and yes I don’t enjoy the physical inspection.

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