Long-Term Effects from Abdominal/Pelvic Radiation?

Deb9621 said:

vaginal cancer

I am 2 months post-radiation and 3 months post-chemo for treatment of vaginal cancer (stage 2).  I had 25 external and 4 internal radiations altogether.  I'll say dealing with the burning and diarrhea was much worse than getting sick from the chemo!

2 months later, my vaginal/anal skin has completely healed   and the diarrhea has subsided.  My problem now is an irritation in my gut that I can't quite describe.  Maybe it's acid indigestion?  I can't tolorate coffee anymore and I loved coffee!  Also I do feel pretty achy as if grocery shopping had been a big work out for me.  Maybe it is since I was on the couch for about 2 months during treatment

I am using a dialator also to try to keep myself open.  The bad news is, my husband "doesn't fit" without pain yet.  We are only 60 years old so I'm hoping over time this will become easier?

 

 

Dear Deb9621, I want to remind you just how much you have been through!!!  2 months post radiation, and 3 months post chemo - holy cow!!! Think of everything you have put your body through and you are still in the healing process. 

I am a visitor from the uterine board, and I remember one dear woman telling me to use the dialator every day.  It was good advice -  it takes time.  It was hard, but it gets better as time goes.  They also have different size dialators, so keep that in mind as well.

I understand not being able to tolerate 'something' after the treatment.  For me, it is hot dogs.  No big loss in my book.  Like you, I am a coffee fan, so take it easy and maybe the tolerate will come back.

Again, be kind to yourself.  

Oh miss Ginny, I am so sorry to hear what you are going through.  I am glad you went and found a second gyn onc who is willing to try to help you.  Your side effects are very real and the pain you describe, debilitating. 

I remember asking the one woman who was running the machine for my planning CT how long she had been doing her job, and she said 22 years.  I said "I bet you have seen this change a lot in that time?" she said, "Yes.  Tremendously".  I remember someone writing on the Discussion Board, "Long Term Effects" or something like that here, and someone said they had COBALT.  Yikes!  That was a different time. 

People had no idea what the side effects are.  The warriors are always in my prayers.

P.S - I am a visitor from the Uterine board.  I hope you don't mind.

Hello Ladies - I've been on CSN for a year or so and found this thread thru Google.  I completed two months of pelvic IMRT for prostate cancer (trifecta... RP, ART and HT) back in October. Bowel disruptions started the second week of daily radiation and persisted throughout and afterwards.  RO said I had to wait six months before getting a colonoscopy, which I had yesterday.  Apparently I have radiation colitis.  Most of my searches have landed me on PRD (pelvic radiation disease) pages, with a lot of PROCTITIS posts, but not much on colitis.

Men do also get cancer (shock!) and I've been looking anywhere and everywhere for information, primarily on coping with the after effects of pelvic radiation.  I'm getting pretty sick of grilled chicken breast and white rice.  My wife prefers "zesty" (or highly seasoned) dishes.  Anyway it's been difficult eating out and not ending up with diarrhea. Heck, I even get it when we don't eat out.  I see two other men have posted in this thread, both of whom have a total of one post each on CSN.

So I have to ask, please, if anyone knows of any online support groups for folks like "us" who have had to live with radiation enteropathy.  Thanks!

RobLee said:

Pelvic Radiation Disease

Hello Ladies - I've been on CSN for a year or so and found this thread thru Google.  I completed two months of pelvic IMRT for prostate cancer (trifecta... RP, ART and HT) back in October. Bowel disruptions started the second week of daily radiation and persisted throughout and afterwards.  RO said I had to wait six months before getting a colonoscopy, which I had yesterday.  Apparently I have radiation colitis.  Most of my searches have landed me on PRD (pelvic radiation disease) pages, with a lot of PROCTITIS posts, but not much on colitis.

Men do also get cancer (shock!) and I've been looking anywhere and everywhere for information, primarily on coping with the after effects of pelvic radiation.  I'm getting pretty sick of grilled chicken breast and white rice.  My wife prefers "zesty" (or highly seasoned) dishes.  Anyway it's been difficult eating out and not ending up with diarrhea. Heck, I even get it when we don't eat out.  I see two other men have posted in this thread, both of whom have a total of one post each on CSN.

So I have to ask, please, if anyone knows of any online support groups for folks like "us" who have had to live with radiation enteropathy.  Thanks!

 

My husband has prostate cancer and has both internal and external radiation . There might be some info in the prostate cancer group.

Soup52 said:

My husband has prostate

My husband has prostate cancer and has both internal and external radiation . There might be some info in the prostate cancer group.

Thanks Soup, I hope your husband is doing well.  The events surrounding my treatment are covered briefly in my profile and more extensively in my blog here on CSN. FWIW I am very acive in this and several other prostate cancer forums as well as the chatroom here (we may have met before in chat?)

Reading your profile I see your mention of below the belt cancer in a world dominated by publicity over breast cancer.  Statistics show that PCa and BC rates are the two highest and have approx equal survival and mortality rates. But go to any cancer website and all the photos are of women.  I guess that's because women are more  likely to be active and supportive of each other.

My wife had non-Hodgkins lymphoma (now in remission for one year) and women who recognoze her salt and pepper hair with the characteristic chemo curl always assume that she had breast cancer. When she tells them that she had primary bone lymphoma it just goes right over their heads. No comprehension. I suggested she just tell them that she had spinal cancer or even simpler, bone cancer.

Cancer is such a complex disease and there are so many variables. Every case is different. People try to help and say oh I know someone who had that and they are doing fine. It is all well intended but except for those who have actually had cancer they don't know how lonely it can be. Even though both my wife and I have cancer, there are more diferences than similarities. What is similar is the fear and uncertainty, and the potential rammifications of every little decision you must make.

Thank you all... I will try to reply to each of you later. Today I have another fasting blood draw this AM and need to get going soon......

NoTimeForCancer said:

Dear Deb9621, I want to

Dear Deb9621, I want to remind you just how much you have been through!!!  2 months post radiation, and 3 months post chemo - holy cow!!! Think of everything you have put your body through and you are still in the healing process. 

I am a visitor from the uterine board, and I remember one dear woman telling me to use the dialator every day.  It was good advice -  it takes time.  It was hard, but it gets better as time goes.  They also have different size dialators, so keep that in mind as well.

I understand not being able to tolerate 'something' after the treatment.  For me, it is hot dogs.  No big loss in my book.  Like you, I am a coffee fan, so take it easy and maybe the tolerate will come back.

Again, be kind to yourself.  

i just started with my treatment...i had chemo for 3 months and now i start radiation for 6 weeks   28 external and 3 internal... i then go back to chemo for 3 more months.... i too am scared for the lasting side effects.. i had a total hysteromy and took my uterus out but they said the radiation is due because how the cancer was growing ... it is called a MELF pattern...i am wondering if anyone else has that too.   thanks again i love to read what others have to say too

My story is a lengthy one. In 2006 I was diagnosed with stage 1A Cervical Cancer. I had a radical hysterectomy. No chemo or radiation needed. In 2008 I was diagnosed with a recurrence stage 3. Another surgery to remove the lesion plus six weeks of chemo and radiation at the same time. I ended up with 32 radiation treatment. I was 33 years old. After radiation I had constipation unable to digest any fruits or raw vegetables. My oncologist suggested hyperbaric oxygen therapy. Other patients had success with it. Fast forward to 2012. That’s when the bowel obstructions started. All of them passed with hospitalization and bowel rest. 2013 I had one that had to be fixed with surgery. They also took my appendix and gall bladder because they looked bad. Ever since that surgery I have had chronic diarrhea. My oncologist said he thought it was radiation enteritis and sent me to a GI specialist. My GI thought maybe blind loop or short bowel syndrome but not much intestine was removed. I had several small bowel follow throughs and colonoscopies. Every test came back with nothing remarkable. Meanwhile I’m still suffering with constant diarrhea and unable to digest anything. I’ve done probiotics, injections in my stomach of meds that were supposed to slow the bowel down. I tried everything you can think of. Finally my GI sends me to a doctor that specializes in the endoscopy capsule. First they want another small bowel follow through. So I go to a different place and the radiologist finds a stricture in the distal ileum. The conclusion was I wasn’t a candidate for the endoscopy capsule because it couldn’t pass. That led to a MRI of the pelvis and abdomen. Why did it take five years for an MRI! The results are Radiation Enteritis! GI doc says they can go in and remove the bad section of the colon. My problem with that is they’ve already removed part of the intestine. What happens if they have to remove a lot? My question is, has anyone else gone through this and do you know of a great place to go. I’m willing to go to the best place for this surgery. I have so much scar tissue and radiation damage to my pelvis and abdomen that they can’t do it laparoscopic. This will be abdominal surgery number 6. So frustrating.

I was searching for info on Pelvic Radiation Disease and I found this link. I had small cell carcinoma on my cervix that spread to my lymph nodes when I was 23. I am now 52. I was treated with a radical hysterectomy, chemo and 6 weeks of external radiation. In the last 20 years, I have suffered with increasing pain, diarrhea, hemorroids, bleeding, etc. I have seen umpteen gastros, had at least 10 colonoscopies, many scans, and endoscopies. I now know I am lactose intolerant, probably have Barrett's, dumping syndrome, have adhesions, probably don't have celiac or Chrohn's. BUT, am in constant rectal and vaginal pain from going to the bathroom at least 15 times a day. Yet, supposedly there is nothing seriously wrong with me. I believe no one so far has paid close enough attention. It's ridiculous and I'm so sick of living like this.