radiation

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tiny one
tiny one Member Posts: 465 Member
edited March 2014 in Colorectal Cancer #1
Has anyone refused radiation? Has anyone complained of the side effects caused by this treatment?

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  • neon356
    neon356 Member Posts: 137 Member
    #2
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    I did not refuse radiation,
    I did not refuse radiation, and I had many side effects most of which were very unpleasant, and some effects which seem to be permanent. I was stage 3, 15 of 20 nodes positive. I had complete trust in my oncologist and surgeon, and felt that they all had my best interests at heart, so when radiation was recommended I took the advice and I'm glad I did. The stats show that radiation greatly increases survival rates so I don't see much reason not to use it as another tool to kill the beast. All in all I'd have to say that every part of the treatment sucks. The surgery, the chemo,and the radiation. they've all had side effects and I'd be hard pressed to decide which is the worst. The radiation is just another thing to try to endure and know that it's part of the plan to wake up one morning and be NED.
    Carl
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #3
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    radiation
    It never entered my mind to refuse radiation (or chemo for that matter). I am in this to fight with every bit of ammunition they can give me and I understand there are risks (and possible unpleasant side affects), but those were the least of my concerns. I was (and still am) more concerned with living and beating this beast into submission.

    I'm sure everyone who has gone through radiation and had unpleasant side affects has complained about them to their oncologists or radiologists. It is because of those complaints that more and more medications have been used to combat the side affects. The problem being, no two people have the exact same side affect so it's not like they can prescribe the same meds to everyone... that's why it IS important that one does report any unpleasant side affects, no matter how big or how small.

    I was one of the lucky ones. I had my abdominal wall radiated for 6 weeks (30 radiation sessions, 3 zaps per session) and although I think I can say I did get tired easily, I certainly wasn't bedridden and I never got any burns or skin irritations that I was warned about.

    Having gone through that, I'm not saying that I would love to go through it again... but if it was deemed that it would be beneficial to radiate the spots on my lungs, then yes, I would go through it again.

    Hugggggs,

    Cheryl
  • paulette S
    paulette S Member Posts: 42
    #4
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    CherylHutch said:

    radiation
    It never entered my mind to refuse radiation (or chemo for that matter). I am in this to fight with every bit of ammunition they can give me and I understand there are risks (and possible unpleasant side affects), but those were the least of my concerns. I was (and still am) more concerned with living and beating this beast into submission.

    I'm sure everyone who has gone through radiation and had unpleasant side affects has complained about them to their oncologists or radiologists. It is because of those complaints that more and more medications have been used to combat the side affects. The problem being, no two people have the exact same side affect so it's not like they can prescribe the same meds to everyone... that's why it IS important that one does report any unpleasant side affects, no matter how big or how small.

    I was one of the lucky ones. I had my abdominal wall radiated for 6 weeks (30 radiation sessions, 3 zaps per session) and although I think I can say I did get tired easily, I certainly wasn't bedridden and I never got any burns or skin irritations that I was warned about.

    Having gone through that, I'm not saying that I would love to go through it again... but if it was deemed that it would be beneficial to radiate the spots on my lungs, then yes, I would go through it again.

    Hugggggs,

    Cheryl

    i wouldnt refuse it. im here to fight and go woth my treatment to stay alive and continue to live my life. i start my chemo and radiation on monday.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #5
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    Radiation and Chemo
    I just finished my 28 treatments of radiation and chemo. I never refused it because I want the best possible chance to live a complete, full life. That to me is just a hurdle to becoming NED.

    I had side affects from radiation. Tears to the rectum and vagina and infections in both the vagina and urethra. I have been off radiation for two weeks and I'm still putting medicine on from extreme front to extreme back (sorry for the graphic terminology) daily so that I heal before I go in for surgery. It still hurts like razor blades sometimes when I go the bathroom. I'm still fatigued and so tired sometimes, I don't think I can stay awake another moment. I couldn't sit for barely 5 minutes without being in pain (before and during radiation). I still have a hard time sitting but it is so much better.
    I had a hard time making love to my husband. It hurt so bad I started crying and found out later I had torn really bad in the vagina because of radiation. But even that got better and we are making love again. It still hurts a little, but is very tolerable. I had diarrhea but that did get better with immodium. Everyone is so different though.

    Would I do it again - you bet you. I got a report from my surgeon that my tumor has shrunk more than I thought it would (course this is what they count on). And I was told that after you complete radiation for up to 6 to 8 weeks after, the tumor still shrinks.

    The actual radiation is nothing, the after affects are worth the risk for me, but not be for you. I'm glad I did, but I would ask your radiation oncologist of all side affects before you go into it. Just so that you won't have any surprises and make sure you ask them for every side affect, because I didn't.

    Kim
  • taraHK
    taraHK Member Posts: 1,952 Member
    #6
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    Had it.
    I had radiation. Didn't consider refusing, because I believed it would give me the best outcome. Did I experience side effects? Yes. Were they pretty bad? Yes. Did I complain? Sure-- loudly, to my husband, every day! Do I regret having done the radiation? No. I would make the same decision today.

    All this being said, it is a highly personal decision, and it is yours to make.

    Good luck to you in your journey.

    Tara
  • polarprincess
    polarprincess Member Posts: 202
    #7
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    taraHK said:

    Had it.
    I had radiation. Didn't consider refusing, because I believed it would give me the best outcome. Did I experience side effects? Yes. Were they pretty bad? Yes. Did I complain? Sure-- loudly, to my husband, every day! Do I regret having done the radiation? No. I would make the same decision today.

    All this being said, it is a highly personal decision, and it is yours to make.

    Good luck to you in your journey.

    Tara

    radiation
    i was told by a whole team at mayo that radiation does not increase survival, but it decreases local recurrence by 95%. I never understood that..if it helps the tumor to not come back, how does that not increase survival?? Anyway.. tough call for me.. i absolutely would not do it again.. If i had a tumor to shrink i think i would, but mine was already gone, my radiation was adjuvant, and offered me a 3% benefit according to studies, yet has left me with 4.5 months so far of excruciating pain when going to the bathroom, i am in menopause at 42 which now increases my chances of a myriad of other conditions, my female areas have shortened and shrink up making sex no longer desirable..i am not at risk for adhesions and blockages etc.. the list goes on... going through it it was the worst nightmarish hell i ever experienced.. i find it so weird how some get no burns or side effects and others of us are burned to a crisp... and i supposedly had the most sophisticated equip avail...
  • CherylHutch
    CherylHutch Member Posts: 1,375
    #8
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    polarprincess said:

    radiation
    i was told by a whole team at mayo that radiation does not increase survival, but it decreases local recurrence by 95%. I never understood that..if it helps the tumor to not come back, how does that not increase survival?? Anyway.. tough call for me.. i absolutely would not do it again.. If i had a tumor to shrink i think i would, but mine was already gone, my radiation was adjuvant, and offered me a 3% benefit according to studies, yet has left me with 4.5 months so far of excruciating pain when going to the bathroom, i am in menopause at 42 which now increases my chances of a myriad of other conditions, my female areas have shortened and shrink up making sex no longer desirable..i am not at risk for adhesions and blockages etc.. the list goes on... going through it it was the worst nightmarish hell i ever experienced.. i find it so weird how some get no burns or side effects and others of us are burned to a crisp... and i supposedly had the most sophisticated equip avail...

    radiation
    I agree, PP, that doesn't make any sense.... to say it does not increase survival, yet decreases local recurrence by 95%. If it decreases recurrence, which is what we are all after, of course that's going to increase one's survival chances. If it did not increase your chances of survival then there would be absolutely no reason to do radiation ... not if you don't have any hope/chance of survival.

    I was told that I was going to be treated aggressively for my colon cancer, to give me the best chance of no recurrence and the highest chance for survival. Now, granted, it could differ depending on just what area you are having radiated... and that might make the difference in side affects. I, also, did not have a tumour to shrink since they took that out with the colon ressection surgery. They were radiating my abdominal wall because I had an abscess form around my tumour (which they also took out at the time of surgery) and that abscess had adhered to my abdominal wall. So they were going to blast the heck out of my abdominal wall to kill off any potential cancer cells that might have thought of taking root in the abdominal wall.

    When I had the radiation, I got three zaps per day... from above my abdomen, from below and through my back, and from my side... X 30 days. I got tired, but then I was also on oral chemo at this time so who knows if the radiation or the oral chemo or the combination of both made me tired. I was warned about the radiation burns that would more than likely happen, especially in the folds of skin. Being a full figured gal, I definitely have folds in the skin... but I did not get any sign of rash, burn or any discomfort, so I didn't need to ask for any cream or meds.

    I was even told not to be surprised if I ended up in a wheelchair because with that much radiation, there was a good chance I would (another gal, same kind of cancer, same number of days, even the same dosage as me, ended up hospitalized and could only do 1/3 of the treatments). But, for whatever reason (again, everyone reacts differently) I didn't have the problems.

    When I went back on the Oxalpilatin/5FU/Leuvorin chemo after the radiation treatments were over... that's when my legs/feet have experienced difficulties and I've had problems with them ever since. Whether that is something I can blame strictly on the chemo, or whether that is a combination of the radiation and the chemo, I guess we will never know.

    Hugggggs,

    Cheryl
  • robertwoitas
    robertwoitas Member Posts: 17
    #9
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    hello I have been away for
    hello I have been away for awhile recovering from my surgery. My recomendation is not to refuse the radiation. I recieved it and althought the side effects at the end were painful it passed and the results were that my tumor was almost completely destroyed. this save me from a permanent colostomy. so what ever you may have heard about the side effects and they are bad, they do not last, and your chance of long term survival increase dramatically. good luck.
  • paulette S
    paulette S Member Posts: 42
    #10
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    robertwoitas said:

    hello I have been away for
    hello I have been away for awhile recovering from my surgery. My recomendation is not to refuse the radiation. I recieved it and althought the side effects at the end were painful it passed and the results were that my tumor was almost completely destroyed. this save me from a permanent colostomy. so what ever you may have heard about the side effects and they are bad, they do not last, and your chance of long term survival increase dramatically. good luck.

    i am so happy for you. good luck in your recovery
  • tiny one
    tiny one Member Posts: 465 Member
    #11
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    polarprincess said:

    radiation
    i was told by a whole team at mayo that radiation does not increase survival, but it decreases local recurrence by 95%. I never understood that..if it helps the tumor to not come back, how does that not increase survival?? Anyway.. tough call for me.. i absolutely would not do it again.. If i had a tumor to shrink i think i would, but mine was already gone, my radiation was adjuvant, and offered me a 3% benefit according to studies, yet has left me with 4.5 months so far of excruciating pain when going to the bathroom, i am in menopause at 42 which now increases my chances of a myriad of other conditions, my female areas have shortened and shrink up making sex no longer desirable..i am not at risk for adhesions and blockages etc.. the list goes on... going through it it was the worst nightmarish hell i ever experienced.. i find it so weird how some get no burns or side effects and others of us are burned to a crisp... and i supposedly had the most sophisticated equip avail...

    side effect
    Were you told before hand and counseled enough about the sexual side effects? I don't feel that I was. Were you told to use a dialator and lubricant? I had alot of irritation vaginally while on chemo, did you? How are you supposed to use a dialator when you're uncomfortable? How are you dealing with this now? I had an ileostomy reversal 1 year ago. It has been very painful with the frequency issue which they say is due to the radiation. If I didn't have medication to slow down the BM's I would seriously consider having the bag put back on. Most of my time without the pills are spent in the bathroom in pain having soreness and then bleeding. This has done a number on me and caused depression.
  • VickiCO
    VickiCO Member Posts: 917
    #12
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    Radiation...don't refuse it!
    I had 28 radiation treatments. I had side effects, pain, burns, crying, begging it all to stop - the whole nine yards. But you know what? Yesterday my oncologist read my whole pathology report to me. (I guess they also did that in the hospital after surgery, but not everything stuck because I was on meds!)Anyway, I consciously learned yesterday that my tumor was COMPLETELY GONE the day of the surgery. No Evidence of Cancer! We waited 5 weeks after radiation treatments stopped to give it the best shot, and it worked for me. This was the best news possible. It lessens the chance of recurrence, and it just felt damn good to know!

    I know it is tough, but we are tougher. Fight the beast!

    Vicki
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #13
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    VickiCO said:

    Radiation...don't refuse it!
    I had 28 radiation treatments. I had side effects, pain, burns, crying, begging it all to stop - the whole nine yards. But you know what? Yesterday my oncologist read my whole pathology report to me. (I guess they also did that in the hospital after surgery, but not everything stuck because I was on meds!)Anyway, I consciously learned yesterday that my tumor was COMPLETELY GONE the day of the surgery. No Evidence of Cancer! We waited 5 weeks after radiation treatments stopped to give it the best shot, and it worked for me. This was the best news possible. It lessens the chance of recurrence, and it just felt damn good to know!

    I know it is tough, but we are tougher. Fight the beast!

    Vicki

    yep...............
    Thats where that BIG SMILE comes from on your avatar...........LOL.......Hang in there kiddo...

    and as for radiation...........definitely do it.....it shrinks the tumor so that there is the best chance of clear margins and most cancer in that area gone.....It is I think the largest part of the whole journey and the part that does the most for you in getting towards that ever wanted NED.........Good luck and God Bless
  • paulette S
    paulette S Member Posts: 42
    #14
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    VickiCO said:

    Radiation...don't refuse it!
    I had 28 radiation treatments. I had side effects, pain, burns, crying, begging it all to stop - the whole nine yards. But you know what? Yesterday my oncologist read my whole pathology report to me. (I guess they also did that in the hospital after surgery, but not everything stuck because I was on meds!)Anyway, I consciously learned yesterday that my tumor was COMPLETELY GONE the day of the surgery. No Evidence of Cancer! We waited 5 weeks after radiation treatments stopped to give it the best shot, and it worked for me. This was the best news possible. It lessens the chance of recurrence, and it just felt damn good to know!

    I know it is tough, but we are tougher. Fight the beast!

    Vicki

    Chills
    I just read your paragraph and got the chills. i dont know you but i am teary eyed with excitement for you!!!!!!!

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