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New things I learned from my talk with radiation oncologist

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was under the impression that once you received radiation on a certain part of your body, that area could never be radiated again. Apparently, with IMRT, that isn't true. Just as the IMRT allows the technicians to lessen the radiation as the machine moves over bones and uninvolved vital organs, should I need radiated again in the pelvic region in the future for any reason, they would use my records from this treatment protocol to design a modulated radiation pattern that takes into account previously radiated tissue. I am praying NOT to ever have a recurrance that calls for additional treatment, but it is good to know that IMRT allows for this tool to be still available.

I also asked about how having fluid in the bladder or not having had a bowel movement before a radiation treatment might affect 'what is where' inside me, since IMRT is so precise. I was told that adjustments for those tiny internal changes are made daily as they look at daily Xrays against the original 'simulation' positioning CT-scan. For my treatments I was told it didn't matter if my bladder was empty or full. Even so, every day before my radiation, I carefully mimic what I did the morning of my simulation CT-scan; drinking coffee and urinating before I leave for the hospital; and then drinking a 12-once glass of cranberry juice on the way for my treatment and not peeing again until after my radiation is over. The oncologist said this consistency wasn't important, but I read of a current Clinical Trial on IMRT pelvic radiation where they are testing whether the bowel or vagina move enough to matter if people have a full or empty bladder. (The Clinical Trial participants have 3 CT-scans a WEEK, and drink 3 glasses of fluid at a consistent time right before each treatment, with the Trial hoping to learn if it matters with IMRT if the bowel or vagina move a few millimeters.) Regardless, it seems to make sense to be as consistent with your simulation CT-scan as possible, right?

I was also told that I probably wouldn't begin to have an upset stomach or diahrea before the 3rd week of this.

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

I didn't have any side effects until after the 15th treatment. Only thing before that time was my bladder but i had bladder problems before cancer. Some times i had full bldder and some times not IMRT is so good it didn't make much differance. I only had a few episodes of loose stool and was told i could take upto 10 Imodium a day. That was helpful. I just watched what i ate and drank lots of fluids. Now i am half way thru the internal HDR and things are going very well. My skin in my peri area was red and sore near the end of IMRT but one week out the skin is just fine.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My radiation oncologist pooh-poohed my concern when I asked what special care I should take of my peri-area during radiation. He said I wouldn't have any problems there. If I get diahrea, I think that it will get sore. Just in case it does, did you use anything on that area? I was thinking maybe Vaseline would be a good choice if that area got sore. I get my 5th round of external pelvic IMRT later this morning, so I am still early in this protocol, with 23 to go.

deanna14
Posts: 733
Joined: Oct 2008

I think you should ask about Vaseline before using it in the radiation field. I vaguely recall them telling me not to use any oil based moisturizers in the radiation field. I really don't think you will have any problems anyway. If you do use something, I would stick with just a water based moisturizer. The only problem I had was the last 2 treatments my rear end was slightly burned, like a sun burn in a big circle around my tail bone area. It was comical, because my crack itched for several weeks after. I had to keep lotion on it then!

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

My nurse recommended Aquaphor Healing Ointment. Use it at night and make sure it's aborbed into your body before radiation. I'm sore there - but haven't had problems specifically with skin. I think the cream helped. - Also, my doctor said that full or empty bladder does not make a difference. He also said that it's better to be comfortable and relaxed during treatment - and not lying there needing to pee. I have been taking vitimin C and E - as in combo they are suppose to help with digestion/colon health.

bonniesue
Posts: 126
Joined: Apr 2009

Hi, My mom has had 22 IMRT and after the 22nd tx had major episodes of diahhrea like 10X til she felt like she was going to pass out. She had a couple of episodes prior to that when I had to pull over on the way home a week prior. Her skin has been fine. she takes I/2 of an immodium after each stool and the seems to be blocked up then for a couple of days. She wants to quit IMRT and head to brachy. does anyone know the ramifications of quitting and how many internal brachys are you getting and are they any better or worse than Imrt. The doctor said he was going to put contrast in the rectum and a foley catheter to protect bowel and bladder? Do you know your dose.. I think my mom is getting between 4500/4800 as they were planning 25-27 treatments and 2-4brachys afterwards to make 6000. Since she is older mayber the rdx tx are hitting her harder and less would be better?? Please reply as I do not know if she can quit at 22 txs. Maybe I can get my mom to log in and talk to one of you.Heard supplement of L -glutamine was good for gut.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I think everyone is hesitating to advise as to whether 22 treatments is as good as the 25 to 27 planned for in the protocol. It all depends on what the cancer seemed to be up to initially, based on the surgery pathology. For instance, my oncologists wanted me to have ALL of my chemo first because my cancer was found in a PAP test and I had microscopic cancer cells in one lymph node, a sign that my cancer was on the move early on and they wanted to attack it wherever else it was trying to settle in. I'm to have 28 IMRTs & 3 brachys because I had microscopic cancer cells in my 'wash', so they want to hit my peritoneal cavity hard with the external pelvic radiation. The brachys are just because the vaginal cuff is such a common place for the cancer to recur. But they put the bracys last, so I am assuming that for me, that is the least important since my cancer wasn't found in the lower uterous. Oncologists want you to do all they prescribe, but are ready to back it off if it is too harsh for your system. Your mother should definitely report her severe diahrea if it continues, as they may want to make adjustments or move on to the brachys. But that decision will be based weighing the dangers of the side effects against the danger of backing off the treatment. I remember my oncologist saying several times when he had to slow down the intensity of my chemo due to low blood counts: "We want to kill your cancer; not kill you." It sounds like it's time to open a dialogue with your mother's radiation oncologist about when 'enough is enough.' ((((BonnieSue))))) Big Hugs!

bonniesue
Posts: 126
Joined: Apr 2009

Thanks,I appreciate your support and today my mom still has severe diahrea. She is 24/28 txs. We did speak to the rad oncologist but did not get much except "I cannot make you complete all your txs" so my mom asked to speak to the chairman(GO MOM) who explained that for questionable micro worries you need at least 4500 which will be tomorrow. He told her to try and take immodium so he gave a thorough explanation of what she needed and reassurance which she had not got from the other guy. He also calmed her about side affects and said IMRT is fairly safe in a different manner from her person that set her up. My mom's washings were neg and it looked as though it did not invade past the uterine wall. It was the surgeon that just recommended brachy due to grade 1 stage 1c or 2b and said more was overkill- but the radx oncologist that recommended both. After he recommended both- my mom read his dictation yesterday and he said he recommended brachy but SHE wanted more agressive tx and he told her it was overkill in the dictation so there is not much trust. In fact I was there when he(radx onc) recommended both and said it was standard of care I . He also said he was going to put her in a study(in dictation) which he did not mention. Did not see the dictation til 23 txs after all the diahrrea. Not trying to trip him up but why dictate lies...when confronted twisted out of it. Now the chairmam just called and said there is no standard of care and she needed just brachy or beam and both would be too much so I am not happy. He said he spoke to both gyne onc and rad onc separately and there are more studies coming out leaning for brachy which my mom wanted in the first place and better communication was needed/ Have you ever heard the garbage????? I hope there are no permanent bowel complicationsa!!!!!!!!!!!!!! I am dissapointed and there was yet another that witnessed this conversation with both rad onc and surgeon. Has anyone else had this or what??? NIGHTMARE

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