Rad. starts Monday...tell me

Tell me the truth. Don't "nice-it-up"! I like to hear different experiences from those who had my stage/grade of endometrial cancer. I am not afraid. I'd rather do this any day than to go to the dentist.

I have researched about radiation (external beam, 25 tmts.) to pelvis. They made three marks on me: one each on the area where my hip joint is, and one in the center, near pubic bone.

When did you start to feel anything from the tmts.? Tiredness, burning, skin changes, problems with colon, bladder, urethra.

If you are years from finishing up, have you had any long term effects? I don't see how there can't be. It's radiation, for Pete's sake.

I just hope I made the right decision to have radiation, because I'm thinking that the 3 month check ups and then the 6 mo. ones, should catch anything early. Then, I still could have a recurrence even though I had rad. tmts. But the rad. will definitely do some long term damage down the road.

Just share your experiences if you had a stage 1B, grade2 endomet. adenocarcinoma. Thanks. You won't scare me at all!! I know what the dice say.

Hi!

I didn't have endo cancer, but I did have the radiation treatments.

They marked me up too. I didn't fair all that well. I got sick after the 3rd treatment, throwing up. I got past that by eating some crackers prior to the treatment. The diarrhea is the next big problem. If you need to lose weight, you will. Of course, I put every pound back on plus more.

Hair loss is only in the area that is radiated. Fatigue set in about the 3rd week. Be sure and follow all the instructions that the radiation techs tell you. Sorry to be so graphic... I forgot to spread the cheeks once, and it burnt my crack up. Needless to say I remembered to spread 'em from then on.

After the radiation, I have not really had any long term effects to speak of. I am having abnormal paps now due to radiation changes, but I think that is fixable.

Good luck on your treatments and keep us posted on how you are managing.
Jeannie

I had 25 external rads. Beginning with about the 12 to 14th rad I had diarhhea. It got pretty bad before I learned to take lomotil of Immodium around the clock for a couple of weeks. I had NO skin problems other than losing some of pubic hair which grew back after treatment. My skin looked exactly the same throughout treatment.

It took quite a while for bowel function to get back to a new normal. I had bladder irritation the last week of treatment. I had to go every 90-120 minutes, which was a pain at night but that didn't last long.

I was more tired the last week of treatment and I laid around more, reading, even took a nap one day. But I had also had 6 chemos and I think that was more of a problem with the tiredness.

Sex is the same as it always was, sometimes even better. Who knew?

Except for the diarhhea, I can't really think of any problems. My bowels are still more easily upset, on occasion, but nothing that is a big deal. I really don't have any lasting effects.

Good luck, keep us posted,
Hugs,
Janie

Hi, LA--

It's been more than five years since I had a radical hysterectomy, BSO, pelvic and para-aortic lymphadenectomy and completed internal and external radiation for surgical stage 1C, grade 2, endometrial cancer in August 1999. The short term effects I experienced are similar to those reported above.

I have only two long-term side effects, one of which I know is due to radiation, and the other which I believe is more the result of my radical pelvic surgery. I have very manageable bowel urgency. In other words, before treatment, I used to know I had to have a bowel movement and could wait for hours if need be before going. Now, when I get the feeling that I have to go, I have to go right away. However, in most cases, I have to go early in the morning while I'm getting ready for work.

I also have what have tentatively been diagnosed as "intermittent partial small bowel obstructions." From my research, these obstructions appear to be more the result of my radical hysterectomy than the radiation. These attacks are a frequent complication of abdominal surgery, especially gynecologic surgery. However, despite the fact that I recently had two attacks and experienced them fairly frequently shortly after completing treatment, I had not experienced any for two years prior to the two most recent attacks.

Good luck with your radiation treatments!

Take care,

MoeKay

Hi there.

I had 25 external radiation after surgery (2/2003). the treatment itself was painless, the only major side effect was absolute exhaustion. I would definitely not have been able to carry on working, if I hadn't already taken the time off as extended sick leave. After about 10 treatments I began to have pain (more like PAIN) on urination, but once I began taking sedastal (little red pills that numb the area and make your urine look like Fanta) that was okay. I also had non-stop diarhia, but not so painful, just annoying. I never ate before treatment, until I was safely back in the house. I was given Immodium which may have helped. I did not follow the diet recommended by the radiation dept. (white rice, no veggies etc) because I chose to go with the diet given by a naturopath (still keeping to it). I don't think things would have been much different. It ws the best weight loss plan I ever was on! (10 lbs - but could use to loose another 20).

I don't have any long-term side effects (of course, I may get cancer from the radiation 20 years down the line, but at the time i felt right in taking the 20 years, you know?) When I did a colonoscopy recently they wrote in the results that I have hemmoroids, but they don't bother me at all.

Looking back, it wasn't such a bad time. At the time, the urinary pain tended to make me cry every time I had to go. but once it's over, you realize it was short term and not so bad.

My doctor told me not to expect the side effects to "fade away" for at least a month after treatment. Seems about right.

Best wishes.

esther

I am 14 days into 25 external radiation treatments for Stage1A Grade1 endometrial cancer. ( I will also receive 6 internal treatments).

The treatment itself is brief and painless. As for side effects, diarreha is the biggest problem. But then I've always had a sensitive bowel. Taking massive doses of Immodium helps a lot. Taking it prophalactically, as soon as you wake up, is probably the best way.

The "white diet", yogurt rice, noodles, potatoes, chicken, turkey actually helps the diarreha. (however, it is very boring) Since my DH is the cook these days he keeps me honest

Up until a few days ago I was not feeling particularly tired but now I'm beginning to fatigue easily.

Drinking a lot of water seems to alleviate painful urination.

Good luck to you. anna

Thanks ladies. The part where one of you said you "...forgot to spread your cheeks and burnt your crack up." was funny to read, but why do you spread your cheeks? If they don't tell me to, I'll ask them if I should!

The hours are cranking down, and I'm getting a little antsy. I don't know why, because I won't feel it (til much later!). I just feel like maybe I'll be giving myself cancer later on due to the radiation, and wonder if the close checkups aren't just as good or better than radiation.

Good Luck LA,

I'll be thinking of you and wish you the best of luck. I'll be the same boat shortly. I meet with the rad/onc on Wednesday.

Hi, LA. It's one thing to know all the possibilities but please don't project negatively. Everyone's experiences are different.

I had external radiation (and internal, too) and it always amazes me when I read about the different things we hear. I was never told to spread my cheeks!! Anyway, my experience, in retrospect, was not bad. I just trusted my doctors and trusted this therapy (which was, frankly, beyond my comprehension). Just how does this work?? I lost weight during treatment but was also doing chemo at the same time. I loved it... I was down to my high school weight! (Boy, are THOSE days gone now!)

I had mild diarrhea ** that was offset to some degree by constipation due to the chemo meds that I was getting. (If you didn't know that you could be constipated and have diarrhea at the same time... you can! And THAT hurt!) I did have the radiation uritis that Esther spoke of. But that was well managed by pyridoxine. I had no nausea, either. I did get some "tanning" of the skin at the top of the insides of my legs as well as two circular spots on my butt cheeks. That was really funny looking. None of the spots hurt.

I did have some discomfort with bowel movements for some time after treatment ended. I'm now about 1 1/2 years out of treatment and everything is really fine now.

Don't worry about the effects of the radiation. In fact, I was x-rayed at least once a week during treatment. The doctor used to freak me out because he always referred to the "tumor" looking good. I finally asked him to explain what he meant since I was under the impression that there was NO tumor at all due to the hysterectomy! Ah, yes, explained the good doctor. "When I say 'tumor', I mean the tumor area."

My advice: Tell your doctor everything. If any side effects pop up, don't suffer in silence. There are lots of good meds out there to help you through this.

I am sure you'll do fine. It won't be a cake walk, but then, what through this jouney is?

Good luck, LA. You're in my thoughts and prayers.

I echo much of what was said above. I finished 28 (no clue why it wasn't 25) external rads at the end of December. I started getting diarrhea after the 7th radiation and kept taking escalating amounts of Immodium to no avail. However, once I got on prescription for Lomotil, the diarrhea really settled down.

But I have had a lot of damage to my rectal area. Having a BM for a few weeks was nothing short of torture. I'm still bleeding a lot, but my rad onc says I have blood vessels very close to the surface. The pain has gotten somewhat better six weeks out from radiation. I seem to have gotten this worse than most people, so don't take me as the radiation poster child. In fact, it's so bad my rad onc decided I shouldn't have the internal high dose radiation. (And no one ever told me about the cheek spreading thing. I wonder if that would have spared me somewhat!)

For me, the fatigue was in the background, since I was dealing with the other problems. I worked almost full time and am a single mom of a 7-year-old. It was tought, but I didn't get the horrible fatigue I got after chemo. In fact, I didn't realize how tired I'd gotten until lately when I see how much energy I have in the evenings.

Best of luck to you. Although the trips to the radiation center seemed endless, the last day finally arrived, and now it seems like something that happened a long time ago already...except for my remaining problems, of course.