Did you have EBRT more than a year ago?

2»

Comments

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited March 2018 #22
    MoeKay said:

    Finished EBRT in July 1999

     

    Hi Tamlen,

    I finished EBRT (5 weeks, 5 times a week) in July, 1999, so it's been 18 1/2 years for me now.  Here are my answers to your questions:

    • How would you describe your quality of life post-EBRT?

    Excellent quality of life.  I'm currently 70 years old and was 52 when I completed treatment.  I'm at the gym 5-6 days a week and have traveled by plane, train, bus and car for vacations over the years.  I've been retired for almost 3 years now, but for the first fifteen years after treatment, I took two trains daily to work and worked full-time until I was 68. 

    • What side effects do you still experience? 

    The only side effect I can say with certainty I experience from EBRT is radiation cystitis, and actually I didn't know I had it until a couple of years ago when I experienced blood in my urine.  At that time, I had a cystoscopy, which showed the radiation cystitis.  The bleeding stopped on its own and I didn't require treatment.  I've had some blood in the urine a few other times, but I also did not require treatment then either.  

    I do have some bowel issues, but I cannot say with any degree of certainty that they are the result of EBRT, because I also have a condition called microscopic colitis, which was diagnosed in 2013.  Microscopic colitis is not a side effect of EBRT.  I believe that I may have developed microscopic colitis after being given heavy-duty antibiotics for an extended period of time in 2009 (and which turned out to be completely ineffective and thus unnecessary for the medical problem it was later determined I had). 

    I have also had a number of intermittent partial small bowel obstructions over the years since treatment, but I can't say with any confidence that they were caused solely or partially by the EBRT.  SBOs can be caused by abdominal surgery or trauma to the abdominal area, although radiation may or may not have played some role. 

    • Was it worth it?

    According to my pathology report (and my gyn-onc) I had a number of poor prognostic factors that put me at a significantly increased risk of recurrence.  So doing EBRT again, given my situation, would be a no-brainer for me. 

    Wishing you all the best,

    MoeKay

    Appreciate the details

    MoeKay, such good news that you've had these 18+ years and a great quality of life, too. I so appreciate the specificity about your experiences, as it's information like this that helps me wade through the decision swamp.

  • christine8822
    christine8822 Member Posts: 40 Member
    #23
    EBRT worth it yes

    Hi, radiation's effects not nearly as bad as chemotherapy.  I finished external beam radiation for stage IIIC grade 2 endometrial adenocarcinoma in November 2015. Mine also was the sophisticated type of precisely targeted impulse beam radiation in the right pelvic region due to positive lymph nodes in that area. At the time I had some diarrhea , bowel urgency, and some burning feeling on labia, but other than that not that much side effects from the radiation. I was on the "sandwich" treatment protocol: I had radiation for 5 weeks, 5 times a week. Radiation was "sandwiched" inbetween my chemo treatments. I had 3 sessions of carbo/taxol over 6 weeks, then the radiation sequesnce, then 3 more carbo/taxol treatments. so in my case, the chemo and radiation effects were kind of blurred. At the time, my radiology oncologist said to eat 2 bananas a day, take 5,000 IU of vitamin D, and think positive. So I did all those things, i think probably just to feel like I had some control. 

    At any rate, all bowel effets from radiation and chemo wore off after about a year. i never had urinary effects. 

    • How would you describe your quality of life post-EBRT?  good after a year or so.
    • What side effects do you still experience? none
    • Was it worth it? absolutuely yes

     

     good luck!!!!

  • survivingsu
    survivingsu Member Posts: 134 Member
    edited March 2018 #24
    8+ years out

    Hi there,

    I had external radiation and chemo, internal radiation and follow-up chemo back in 2009 (July-December, Surgery in November).  Since I had chemo and radiation simultaneously, I'm not sure what side effects are caused by what source...but I know that I needed to have the treatment in order to still be here.  :0)

    Cheers,

    Susan

  • Soup52
    Soup52 Member Posts: 908 Member
    edited March 2018 #25
    I also agree with Moekay also

    I also agree with Moekay also. Any of my bowel problems could be the result of several abdominal surgerpies as well as chemo along with radiation . With my cancer being high grade any trade off was worth it.

  • Tamlen
    Tamlen Member Posts: 343 Member
    #26
    Thx, survinginsu and christine8822

    It's helpful to hear from both those of you who've had good and those of you who've had poor quality of life post-EBRT. Doesn't clear the question up much, but personal accounts augment the research literature in helpful ways.

    I so appreciate everyone who's taken the time to answer my questions. This forum is an amazing place.

Discussion Boards