Long-Term Effects from Abdominal/Pelvic Radiation?

Identified with uterine cancer May 2012 followed by hysterectomy.  Three doses of chemo, then 28 doses of radiation (two of those internal) then three more doses of chemo.  Chemo was not as bad as the radiation.  Last radiation Dec 2012.  Have had a couple episodes of painful gas/cramps, most recent (Nov 2013) ended up in the hospital for four days.  The doctor could not find a blockage that needed surgery, but said that my colon was swollen (a swollen colon, LoL!) He felt that it was due to having eaten some high-fiber foods. It didn't occur to me that it could be related to long term effects from the radiation.  Then I read the entries in this discussion board.  My question is are these episodes related to the radiation and are they going to continue to get worse??  And...what kind of doctor do I go see: a gastro-enterologist or the radiation doctor?

Hi. In 2011 at age 54 yrs I was diagnosed with 2b cervical cancer. I received 25 broad external abdominal radiation treatments along with 4 Cysplastin chemo treatments, followed by 5 HDR internal brachytherapy radiation treatments. No surgery.  I received a cancer free PET scan report following treatments and 2 more after that one. Other than an abnormal dysplasia PAP after which I had a LEEP performed by my oncology surgeon, I have been cancer free, so far, and have graduated to 6 month checkups, from 3 month.  I did well during my treatments, for the most part, suffering mainly with the digestive upsets including sensitive stomach with bad heartburn and diarrhea. No radiation skin burns and I did pretty well with energy until the last couple of weeks when I did become weak and tired and required a couple shots to raise my blood counts in order to complete treatments. My radiation oncologist forewarned me of the likelihood of bowel upsets both during and after treatments; sometimes going away after about 2 yrs and sometimes staying forever.  Apparently I've fallen into the "forever" group because not only have my digestive issues remained - they have gotten worse in the past year or so.  I have heard this being referred to as late term radiation after effects on a few other blogs and support groups.  I've pretty much accepted that I'll have to deal with it for the rest of my life for all of the resons all of you have mentioned.  Radiation damages tissues and abdominal radiation reaches a lot of sensitive areas.  I can manage most of it with Immodium and antacids but have to be extremely careful with diet, steering clear of fiber foods and too many fruits/vegetables.  I'm fine with most meats and cheeses (though have developed a sensitivity to beef for some reason).  My oncology surgeon said - when doing the LEEP under out patient surgery - that it was hard to tell the difference between the dysplasia and the radiation damage and that I was going to always have some bleeding with intercourse and dilator use.  Basically, the mucosa is gone, between the radiation and the LEEP.  Nothing major.  Just a little diluted pink that goes away but just another of the post-radiation after effects.  Perhaps worse than that are the hemhorroids and their flare ups from the continual diarrhea during treatments and after.  I have learned to live with the constant uncomfortable feeling in my abdomen and feel, even with all of the discomfort and inconvenience these after effects cause, that it is a fair trade off that I can live with - LIVE being the operative word. I've noticed that I bruise a little easier but not sure if that's related to any of the cancer treatments or just age.    Probiotics work wonders but I've noticed that, at least for me, I need to chg probiotic formulas periodically because they start to lose effectiveness for some reason after taking them for awhile.  So, in short, there are DEFINITELY long-term after effects from abdominal radiation that can vary in intensity and severity and, at least as far as I can tell at this stage, seem to never go away completely.  Another thing that I've noticed is that very few doctors want to admit that there are these late term after effects that come from the treatments.  Another common complaint I've read about on other groups and blogs is chronic leg pain from the radiation treatments. One survivor was intent on trying to get it recognized as a side effect in order to have better protection for legs during treatments become required.  I know that I had nothing but a sheet over my legs during my radiation treatments.  I empathize with everyone dealing with these after effects and hope that all find some relief enabling a better quality of life that those radiation treatments gave us.  I try to remember that a couple generations ago the same diagnosis was an automatic death sentence and despite the discomfort and difficulty with the after effects, I am grateful for the advances in treatment and thankful to be alive to deal with it.  It's not my first battle with life threatening issues, having suffered a ruptured cerebral anuerysm in 2006 and although spent 3 1/2 wks in the hospital - 3 in a coma - I came out of it alive and unimpaired; a true miracle.  All have made me a little more pragmatic and thankful for life, even if it comes with some discomfort.  Prayers and blessings to all!

Hi!  GWM 66+ old.   Hope this doesn't disturb--I'm 16 years out from my bout with anal/rectal cancer and pelvic radiation in 2000.  My cancer was HPV related.  A pap smear would've caught it but they didn't do those back then on gay men.  The good news is I'm still around much to the dismay of some and the happiness of others!  The tough news is that my bowels and urinary tracts are still the main problems of my existence.  I eat only hot rice cereal (like creamed rice) in morning after which I have to wait patiently for my major movement(s) before I can evaluate going out for the morning/day.  If I'm out more than a couple of hours, pee urgency comes and goes which becomes uncomfortable.  I limit my trips.  I don't travel anymore.  I rarely eat at restaurants and if I do they are planned carefully so I can make it to a bathroom soon after.  No spicy foods.  No greasy foods.  No foreign foods.  Beware cooking oils.  I subsist mainly on a daily noon large salad and piece of white bread.  I bake my own bread because too many additives cause probs now in store purchased.  I try never to overeat (though it'd be difficult since my stomach holds only so much).  Cramps and gas are usual.  I don't date.  I don't have sex with anyone. Sexual appetite diminished fast after cancer leaving some potency issues.  Not a problem as I'm older than God now.  Hope nobody else gets this disease.  To someone who is under 50, it would be devastating, I believe.  Hugs to all!

i have a lot of the same bowel problems, too. I will have a virtual colonoscopy later this month because I had an incomplete regular colonoscopy earlier this month. Dr. Didn't want to go any further as he thought it could cause a major problem. Very narrow as he couldn't push the scope further. Hoping to get some answers..

I got results yesterday from my virtual colonoscopy and no polyps or cancer! Yah! I do have some diverticulosis which I already knew I had. Anyway the dr gave me a list of possible foods that might be a problem and alternatives. Also, interesting that you mentioned lactos intolerance. I never thought I had a problem with it, but I am having a test for it on the 17th to determine if that is a problem for me. At any rate I'm glad I investigated with the colon tests. The fear of cancer going there is just to great for me to just accept that it was my new normal. Good luck! I hope you get some answers, too!

Feedthekitty, I am from the Uterine board but I had 25 rounds of IMRT (I also had 3 brachytherapy after the 25).  I did not have nausea and only slight diarrhea which did NOT last the entire treatment.  I also took probiotics before, during, and after (still do) it all.  Everyone on the boards will always hear me suggest probiotics - but everyone is different.  My radiologist did say that because I was slender the side effects would be worse, but it was minor. 

As for the IMRT even my radiologist was surprised by the lack of radiation burns, but I was talking with the techs who run the machine.  I asked them about radiation burns and he said they don't see it with IMRT.  (I'm taking their word for it because this is what they do every day and what they see)  Radiation did give me fatigue like I had never felt before (OYE!) and radiation continues to work for up to six weeks after treatment stops. 

I don't have anything to compare it to but I read about IMRT and think it was a better way to get it.  Please let us know what you decide and how you do (if you choose to have it)  

Hello  beautiful ladies! I have a long story like many of you. But on this message I will keep it short. Last summer I received radiation for vaginal cancer. I also received 5 treatments of intravaginal brachytherapy. About 4 months after it ended I began to get "burns", swelling, discharge, itching to name a few. I did the dilators but it didnt help and now I am very worried because the vaginal area is so narrow and painful. Not to mention I have a wonderful UTI! :-( Do you think anything can be done about the narrowng at this point? I am also looking for a new doc, this one doesn't really seem to be interested in helping me.

I had a partial radical vulvectomy to remove stage 3A squamous cell carcinoma, so I can kind of understand.  My gynecologic oncology team has to use the pediatric speculum with me because of the narrow hole.  

PG, I echo babe's advice to find a different doctor if you feel that this one isn't giving you the care you need and deserve.  Have you been prescribed any type of pain reliever, such as hydrocodone?  

For the sunburnt areas, my radiation oncologist had me use Bacitraicin ointment (which you can purchase at a drugstore) and Domeboro.  He also recommended leaving the surgical site uncovered under a ceiling fan.  If the Bacitraicin doesn't work, you may need Silvadene (silver sulfadiazine).  My radiation oncologist had to prescribe this because the sunburnt area was so severe, like second-degree burns.

For the UTI, drink cranberry juice or eat fresh cranberries.  (This was a recommendation from my radiation team.)

Good luck!

lindaprocopio said:

I had 28 rounds of pelvic radiation largely healed by BRAT diet.
I had 28 rounds of pelvic radiation in summer of 2009 for Uterine Papillary Serous Carninoma (a rare aggressive form of uterine cancer). I celebrated my remission with a trip to Greece, Turkey & Italy and came home with some serious digestive issues that my oncologists and nutritionist attributed to a slightly delayed reaction to all of the pelvic radiation I'd had. I have always (life long) eaten a high-fiber diet heavy on fresh vegetables and fruits I grow myself organically. The nutritionist put me on a low-residue diet based on the B.R.A.T. diet (ripe Bananas, white Rice, Applesauce, unbuttered white Toast). In addition to this, she had me eat at least 1 tablespoon of organic yogurt daily and take a multiple vitamin and calcium as my only supplements. This was in direct opposition to the way I had always eaten, and I hated it, but within 3 weeks my bowels had settled down and I was able to start GRADUALLY adding back in higher fiber foods, one at a time in small quantities, until I was back to eating my daily spinach salads and whole grain breads, etc. Now, any time I have bouts of diahrea, I go back on the BRAT diet for a week or so, and I can get my bowels back to nearly normal and start the process again of re-introducing higher fiber foods. (Sweets still bother my digestion, so I eat those only in moderation).

I forgot to add that the nutritionist wanted me to have 2 packets of Carnation Instant Breakfast every day that I was on the BRAT diet, to provide protein for healing. Each day I mixed one envelope of it into a small container of Greek yogurt, making it into a really yummy dessert, not too sweet and almost like cheesecake in taste. In the evening I'd heat up a mug of milk in the microwave and stir an envelope of the chocolate flavor into that and it tasted just like hot chocolate. Those 2 'treats' made that diet less grim and more nutritionally balanced.

lindaprocopio

I wanted to thank you for posting that diet information. I am currently experiencing daily problems after 10 years of being pretty much symptm free. Here's the catch. I am 32 and I am really scared of how I am going to be in a few years' time. I used to be so pleased that I had survived and now i wonder if it was really worth it. Of course it was, I know that, but I am struggling a lot these days.

Is there any other diet tips you can give?

Thank you - really thank you a lot

Hi all, Yesterday, I had my two week check-up after surgery (radical vulvectomy with lymp node removal) to see how things are healing and discuss results of lymph node biopsies. Things are healing well but results and recommendation of further treatment were unexpected and a little unsettling. Doctor said she got clear margins around tumor, lymph nodes from right side were all clear, she removed 11 lymph nodes from the left side and one was positive for cancer BUT she doesn't feel radiation is going to be needed at this time. This was confusing to me because I thought if cancer was found in nodes then next step is radiation.....but she said because she got a large sample and it was contained within only one node she felt radiation wasn't needed. Anyone else have this experience? What do you all think about this?