Did you have EBRT more than a year ago?

Tamlen

I am interested in hearing from any of you who've had EBRT (external beam radiotherapy) and are at least a year out from that therapy.

I am interested in hearing...

• How would you describe your quality of life post-EBRT?
• What side effects do you still experience?
• Was it worth it?

Thanks so much.

Red Dahlia

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.

Tamlen

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.

Thank you

Thanks so much for sharing this, Red Dahlia, it is helpful. I am so happy you're NED without too many long-term side effects.

Soup52

Like red dalia I’m also 2

Like red dalia I’m also 2 years out. I remain NED from 3C cancer. I also had 6 rounds of chemo. I have some of the same after effects, but my quality of life is generally good. I’m happy to be alive:)

LisaPizza

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?

CheeseQueen57

I hesitate but....

I finished radiation November, 2016. Stage3c, Grade 3. 28 days of external, 3 internal. Although I had osteopenia before, my bones are pretty much ash now as I have full blown osteoporosis and suffered an insufficiency fracture of my sacrum in December 2016 and a lumbar fracture in July 2016. Both healed. Directly after I had multiple UTIs and bladder issues including constant burning and some incontinence. That has resolved. I have some intestinal narrowing and some bleeding but that hasn’t caused me much problems. I tried unsuccessfully to use the dilator to maintain vaginal patency which has resulted in the inability to have sex. I am now dealing with a a ureter stricture possibly caused by the radiation and I have had to get a renal stent.  The first 3 weeks of the stent was horrible but it’s ok now.  I had a reoccurrence in the peritoneal area 8 months after finishing the radiation.  Would I do the radiation again?  I’m not sure.  If I  knew then what I know now I might have waited for a reoccurence cause the after effects have been rather devastating although I’m still alive  

 

ncg007

I also finished EBRT Feb 2016

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.

Tamlen

CheeseQueen57 said:

I hesitate but....

I finished radiation November, 2016. Stage3c, Grade 3. 28 days of external, 3 internal. Although I had osteopenia before, my bones are pretty much ash now as I have full blown osteoporosis and suffered an insufficiency fracture of my sacrum in December 2016 and a lumbar fracture in July 2016. Both healed. Directly after I had multiple UTIs and bladder issues including constant burning and some incontinence. That has resolved. I have some intestinal narrowing and some bleeding but that hasn’t caused me much problems. I tried unsuccessfully to use the dilator to maintain vaginal patency which has resulted in the inability to have sex. I am now dealing with a a ureter stricture possibly caused by the radiation and I have had to get a renal stent.  The first 3 weeks of the stent was horrible but it’s ok now.  I had a reoccurrence in the peritoneal area 8 months after finishing the radiation.  Would I do the radiation again?  I’m not sure.  If I  knew then what I know now I might have waited for a reoccurence cause the after effects have been rather devastating although I’m still alive  

 

You've been through a lot

Oh, CheeseQueen, you've been through a lot after EBRT. I really appreciate both your honesty and the details you provided, all helpful to me as I weight the possibility of EBRT and decide if I will agree to it.

Tamlen

ncg007 said:

I also finished EBRT Feb 2016

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.

PRD

Thank you so much for responding, ncg007. Like others who've posted, you've been through a lot. PRD is one scary thing and it appears not as well acknowledged here in the U.S. as in Europe. Has anyone on your medical team acknowledged PRD or offered you ways to manage/combat it?

Tamlen

Soup52 said:

Like red dalia I’m also 2

Like red dalia I’m also 2 years out. I remain NED from 3C cancer. I also had 6 rounds of chemo. I have some of the same after effects, but my quality of life is generally good. I’m happy to be alive:)

Thanks

Thanks, Soup52. It sounds like EBRT was relatively kind to you. Too bad there hasn't been research (at least any I can find) that helps predict who will suffer a little and who will suffer a lot from EBRT's after-effects.

Northwoodsgirl

Radiation therapy

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. 

 

NoTimeForCancer

I had 25 IMRT treatments five

I had 25 IMRT treatments five years ago (here is a link to tell you more)  https://www.radiologyinfo.org/en/info.cfm?pg=imrt   It is pretty neat as how they try to control the beam to avoid organs, etc...and three brachy

I am very fortunate and have not had any known side effects. 

Tamlen

Northwoodsgirl said:

Radiation therapy

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. 

 

So sorry for what you've been through

I am grateful that you shared your experience with me but so sad about what you're experiencing, Northwoodsgirl. You must be one strong woman.

Tamlen

NoTimeForCancer said:

I had 25 IMRT treatments five

I had 25 IMRT treatments five years ago (here is a link to tell you more)  https://www.radiologyinfo.org/en/info.cfm?pg=imrt   It is pretty neat as how they try to control the beam to avoid organs, etc...and three brachy

I am very fortunate and have not had any known side effects. 

Targeted at tumor?

NoTimeForCancer, as I understand it, IMRT is used to target a specific tumor location, as opposed to EBRT, which has the goal of killing cells throughout a region (like the pelvis). So were you eligible for IMRT because you had tumors with known locations? That would not be my situation. It sure sounds like a good alternative for the right situation and I'm glad it was a good outcome for you.

Kaleena

Only 3 brachytherapy

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.

 

Red Dahlia

LisaPizza said:

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?

Brachy

Yes, I had two sessions pf brachy.  My only side effects from that was a burning type feeling during urination.  I was also self-cathing yet at that time due to neurogenic bladder from my surgery.  I think the burning was related more to the irritation of brachy combined with catheter use. 

Tamlen

Kaleena said:

Only 3 brachytherapy

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.

 

Brachy side effects

Thanks for letting me know about the side effect you experienced from brachy, Kathy. It sure sounds like it put you through the ringer. I will have brachy for sure, so it's good for me to be aware of some of the lesser known long-term potential consequences.

barnyardgal

I haven't had radiation yet

I haven't had radiation yet but I am getting the targeted beam radiation like Notimeforcancer. I'm ned right now since surgery. (Was 3a).

My dad had radiation 40 radiation treatments with wide beam 15 years ago for prostate cancer and other than being temporarily tired he has been fine.

MoeKay

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

NoTimeForCancer

Tamlen said:

Targeted at tumor?

NoTimeForCancer, as I understand it, IMRT is used to target a specific tumor location, as opposed to EBRT, which has the goal of killing cells throughout a region (like the pelvis). So were you eligible for IMRT because you had tumors with known locations? That would not be my situation. It sure sounds like a good alternative for the right situation and I'm glad it was a good outcome for you.

My IMRT was for the entire

My IMRT was for the entire pelvic region.  It is designed to minimize radiation to the bladder and some parts of the colon.  I was Stage 1A, so it was all contained to my uterus.  Since it was aggressive I had the full monty on the treatment side. 

Good luck and please let us know how you are doing dear one.

Tamlen

barnyardgal said:

I haven't had radiation yet

I haven't had radiation yet but I am getting the targeted beam radiation like Notimeforcancer. I'm ned right now since surgery. (Was 3a).

My dad had radiation 40 radiation treatments with wide beam 15 years ago for prostate cancer and other than being temporarily tired he has been fine.

Glad your dad and you are both doing well

Thanks for this information, barnyardgal. Glad to hear your dad is well after RT and that you're NED. Wow!