Post radiation questions and concerns

polarprincess
polarprincess Member Posts: 202 Member
edited March 2014 in Colorectal Cancer #1
Well i made it through the nightmarish hell and monday is my last treatment. My radiation was adjuvant for a malignant polyp and 1 lymph node positive. I did not have any tumor to shrink- and the polyp that i did have prior wasn't even rectal it was 15-20 cm above recto sigmoid junction. The local and doctors at mayo recommended radiation so i decided to do it. Now i am panicked and am seriously regretting having done it. What doesn't help is that i now have found studies for people in stage IIIa that it offers maybe a 3% benefit, and I wish i had found that sooner.

Why do i regret it?? All i read is about the long term problems people are having with bowel movements and sexual issues etc.. and following my surgery and prior to the radiation my bowel movements were fine. I did not have issues with constipation or diarrhea. I was able to eat anything without any difficulty. During radiation as my posts have mentioned, I have had serious bowel issues. If this were to continue the rest of my life, I would seriously be suicidal. I could not handle it. As far as the sexual issues, I know i was supposed to use a dilator or have sex 2-3 times a week, but because my privates were pretty much fried and swollen shut, and i have been bleeding from there 2 weeks straight, this has been impossible. From what i can tell, things are still "open' and do not seem to have shrunk, or anything like that...but I have been left to wonder...
is there anyone that has not suffered long term post radiation issues? is there hope of my bowel movements and sex life going back to normal? I desperately want to get back to a healthy diet of raw fruits and vegetables...is this going to be possible for me? have i ruined my life for a treatment a may not have even needed?

Just like it is easy to panic because so many people on this forum have recurrences, i have often been reminded that people on this forum are likely here because they are having problems and that there are many people who have gone on with their lives that don't have problems, and they don't need to be on forums like this. is it possible this could be the same for radiation issues? Are there people who may not have any????

Comments

  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #2
    Post Radiation questions
    Hi Polarprincess,

    First... I wish I was there to give you a big old hug and let you know that there is no need to panic. Radiation is a biggie when you are going through it and it is known to cause all kinds of problems at the time... but the majority of these problems/symptoms do disappear once things have had a chance to heal after the radiation has stopped.

    I'm sorry, but my memory is not the best and I can't remember where exactly your radiation was being directed. I had six weeks of radiation that was directed to a spot on my abdominal wall. Long story, but when my tumour perforated the intestinal wall, an abscess was formed around the tumour. By the time this was diagnosed and found out, the abscess (which was the only thing causing me pain, otherwise I would never have known about the tumour until it was way too late) not only surrounded the tumour, but was stuck to the abdominal wall. During surgery they got rid of the tumour, 18 inches of intestine and the abscess. But my surgeon was concerned that there was a good possibility that cancer cells from the abscess may have landed or taken root on the abdominal wall... so he marked the area with metal clips and the radiologist knew exactly where to radiate.

    Every day, for 6 weeks, I would get three zaps... from above the front, the right side and then from below. So I got zapped pretty intensively. I don't recall having any major bowel problems, although towards the end I think I did experience diahrrea, of which just plain old immodium seemed to do the trick. I did get a bit of a radiation burn in the fold of my skin on my right side... which they gave me a prescription cream for and that seemed to clear it up fairly quickly.

    Once the radiation was over... things settled down fairly quickly and returned back to normal. I'm pretty sure inside got fairly burnt, and they were concerned that the surrounding organs may get some damage because you can't zap the abdominal wall without something being in the way. But if there is any long term damage, it hasn't been enough to make a huge impact on me.

    So, hang in there. You may have other areas than I did, get radiation damage and it may take a bit longer. You should discuss with your radiologist just what areas/organs/body parts he/she thinks may have gotten damaged, explain the problems you are currently having and when can you expect them to start improving.

    Huggggggs,

    Cheryl
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #3
    been there
    I also had radiation in 2003 for my stage 3 rectal cancer. I too have been left with many issues. I had a temp. ileostomy that was reversed 8 weeks after I had it. I then had only 4 out of 12 radiation treatments. I had diarrhea so bad I ended up in the hospital. I hate telling you this, but the diarrhea continued and 18 mos. later I had a colostomy done. My sitiuation is rare. You have just finished and need to let your body heal.

    If I had to do it again I probably wouldnt change anything because through all of this I have remained cancer free. I was so scared of the cancer coming back and I would have done anything to be cancer free. I also had all of my rectal tissue removed and have colon stapled to my anus. Gross, I know.

    Most of the people that have radiation do not have it this bad.

    Good luck and keep us posted.

    Maureen
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #4
    Moesimo said:

    been there
    I also had radiation in 2003 for my stage 3 rectal cancer. I too have been left with many issues. I had a temp. ileostomy that was reversed 8 weeks after I had it. I then had only 4 out of 12 radiation treatments. I had diarrhea so bad I ended up in the hospital. I hate telling you this, but the diarrhea continued and 18 mos. later I had a colostomy done. My sitiuation is rare. You have just finished and need to let your body heal.

    If I had to do it again I probably wouldnt change anything because through all of this I have remained cancer free. I was so scared of the cancer coming back and I would have done anything to be cancer free. I also had all of my rectal tissue removed and have colon stapled to my anus. Gross, I know.

    Most of the people that have radiation do not have it this bad.

    Good luck and keep us posted.

    Maureen

    Radiation
    Had it for 5 weeks for rectal cancer and most everything stayed normal except for the feel of swelling. It did get hard to urinate but nothing I couldn't handle. There was a slight case of diarrea but nothing to bad, and Aquaphor took care of the small amount of sunburn I got the last week. After about 3 weeks everything was pretty much back to normal. It will get better, hang in there. It will pass by fast........
  • polarprincess
    polarprincess Member Posts: 202 Member
    #5
    radiation
    thanks for the responses. My whole pelvic area was radiatied for the rectosigmoid cancer. My experience during radiation has been a brutal nightmare. I got horrible constipation instead of the diarrhea i was expecting// and got so bound up i had to drink golytely to get things going again at the advice of my doctors. That was a mistake. That caused horrible horrible tenesmus (urge to go when you don't need to) which resulted in extremely painful hemorrhoids which i still have. I have major burns and cuts from the radiation. I have a huge fissure in my "crack" area. Going to the bathroom (bowel movement) results in extreme pain and burning which has been excruciating. Much of it is blood and mucus. My female areas are pretty much swollen shut, and i have been bleeding straight for 2 weeks. I slather myself in aquaphor, but nothing has helped so far. I have spent entire weekends in a hot bath trying to get some relief from the pulsating pain of the hemorrhoids, and they were finally able to find some meds that worked for me....so it has really been a true nightmare that i just want to end,,,that is why i am looking for some hope.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #6
    polarprincess said:

    radiation
    thanks for the responses. My whole pelvic area was radiatied for the rectosigmoid cancer. My experience during radiation has been a brutal nightmare. I got horrible constipation instead of the diarrhea i was expecting// and got so bound up i had to drink golytely to get things going again at the advice of my doctors. That was a mistake. That caused horrible horrible tenesmus (urge to go when you don't need to) which resulted in extremely painful hemorrhoids which i still have. I have major burns and cuts from the radiation. I have a huge fissure in my "crack" area. Going to the bathroom (bowel movement) results in extreme pain and burning which has been excruciating. Much of it is blood and mucus. My female areas are pretty much swollen shut, and i have been bleeding straight for 2 weeks. I slather myself in aquaphor, but nothing has helped so far. I have spent entire weekends in a hot bath trying to get some relief from the pulsating pain of the hemorrhoids, and they were finally able to find some meds that worked for me....so it has really been a true nightmare that i just want to end,,,that is why i am looking for some hope.

    How I cope with pain
    Yes I use pain meds sometimes when I have to have them but I cope by telling myself this, it could be my children or my siblings, I would much rather go through this than stand by and watch them go through it. That makes it bearable for me. There is no reason to be in any type of pain, there are meds to take care of it all, you have to be firm with your dr if you need them get them....Steroid suppositories for the hemmoroids...works quick....theres a lot better stuff than Aquaphor out there if you ask for it. Some offer it, some won't unless you ask. If your in pain, ask for it.........Good Luck
  • RunnerZ
    RunnerZ Member Posts: 185
    #7
    Hi! I am a ten year
    Hi! I am a ten year survivor of stage 3 rectal cancer, diagnosed at 36. Radiation was just as dreadful as you have described it. I had preoperative chemoradiation and suffered just about every side effect you could imagine, including really good burns in areas that I would rather not have burned. It left me totally exhausted and, at the end, hospitalized with no white blood cells! However, I am cancer free almost 10 years later and the residual effects from the radiation do go away, they just take longer than one would hope. You sound like I did at my low point of recovery....life was a complete uncomfortable nuisance. Just give your body and mind some time to recover. Little by little daily joys will start to accumulate. I was just happy, at first, when I could focus enough to finish a crossworkd puzzle! I am now 46, run 5-6 miles every day (more on the weekend) and work full time as a prosecutor. You can do this-but you are in the hard spot now. Perservere...it will get better, I promise!

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