Did you have EBRT more than a year ago?

Red Dahlia said:

2 years out

I finished EBRT in the middle of Feb. 2016.  It was worth it for me as I am NED from Stage 3A grade 2 endometrial cancer.  My quality of life is good.  I have had some side effects with occasional rectal bleeding and narrowing of stool. but have narrowed down cause to eating nuts, hard beans(garbonzo) etc.  I had a colonoscopy this past November that showed that blood vessels in colon were close to the surface from radiation damage, thus the occasional bleeding.  Since I have quit eating these types of foods, I have had no further bleeding.  I also continue to get accupuncture which I think has helped me maintain my health. I also drink beet kvass daily which is like taking probiotics,  I did both of these things throughout my treatment as well.   Hope this information helps.

Red Dahlia, that is so encouraging to me as I have the same stage and grade. In chemo now, EBRT next. Did you also have brachy?

I also finished EBRT Feb 2016, Stage 3C1, high grade.  Radiation was not too kind to me as I have been left with spinal nerve damage that affects my back and down my left side (hip-toes), a weakened pelvis that often gets out of alignment which is extremely painful, and Pelvic Radiation Disease.  Was it worth it? With the pain and issues I now have to live with I often question that, and the answer is yes because I am alive.  I wish you all the best.

I had external radiation 9 years ago. I also had brachytherapy 9 years ago. Ever since I have suffered from proctalgia fugax . Basically the Levator nerve fires for no reason and creates excruciating pain. It can wake me up from a deep sleep.  I also have paper thin vaginal tissues. But as we all know we endure radiation in order to save our lives as recommended by our physicians. We are warned it can cause cancer later on also. I also believe I have pelvic radiation disease based on history and symptoms. US doctors don’t seem to recognize it. 

For my Stage 3a, Grade 2 endometrial adenocarcinoma, my radiologist/oncologist advised against any type of pelvic radiation for me as I had too much scarring already from the endometriosis.   He said it would do more harm than good.  They approved the 3 brachytherapies which I had in 2006.   There isn't much on the long term effects of radiation.   However, in my case, I can tell you that I did develope a ureter blockage in 2014 which was caused by the 3 brachy treatments.  I had to have a ureter stent placed (and then replaced every 3 months).   I did this for over a year until I had a ureter reimplantment surgery in December of 2015.   So it did take about 8 years after radiation for me to incur any problems.

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