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Radiation Treatment YES or NO

bea-mil
bea-mil Member Posts: 108
edited March 2014 in Uterine Cancer #1
Hello everyone,
I’m waiting for the radiation, and I’m still not sure if I should do it? I’m so against consciously harming my body (this is how I perceive this treatment) and I don’t really believe that radiation can do any good. It is so hard to make this decision. But I’m too scared not to do it. One day I say no, another day – yes. Right now I’m preparing my body for those harmful rays by taking different supplements, Chinese mushrooms, herbs prescribed by my herbalist and by being on special diet. I look for an answer on the web but I know that no one can answer this question but me. I think I’m more terrified of the radiation than the cancer itself. In March this year I had total hysterectomy and my doctor suggested the radiation as a precaution. My cancer was stage 3a (passed through the outer side of the uterus wall but didn’t spread to any other organ) and grade 2(closer to 1 than 3 as my doctor described). I just hope that since the cancerous cells weren’t that well differentiated maybe my body can “deal” with them.
When I’m reading your stories I can’t find any person whose treatment was finished with first radiation treatment. I don’t see much optimism. I simply don’t want to spend rest of my life at the doctor’s offices. After the surgery I feel like a new born, so healthy. I can be that healthy for a next year or two or maybe for the rest of my life, but when I take this radiation treatment I will be sick next week for another year or two or maybe for the rest of my life. This is just my confused point of view. Is there anyone who can lighten me up?
Bea

Comments

  • culka
    culka Member Posts: 149
    Beatka
    I understand and you have no idea how mad I am with myself about doing radiation. I was in pain for 19-20 months. Doctors ignored it, only my family doctor told me that he has no idea what to do. Maybe because we are from the same country.
    I resolved that problem with my funny anti-cancer diet and I hope that it will not come back in any form. What I am saying quality of life and length of life is not the same. Due to our awesome Canadian health care I`m out of cancer circle of care, only our family doctor is available. And if anything start again, with their speed (making appointment with cancer doctor), it will be too late for anything.
    And frankly I would preferred life without doctors appointments and tests and waiting time and more radiation....

    My herbalist/acupuncturist is my husband and that time I could not get straight answer from him, what he will be doing. After I said yes and he order "anti-radiation herbs", he finally answered me "I will never let them do it to me".

    During radiation I was taking 12g of vit C, 3x 400 IU of vit E, B-komplex, some vit D, royal jelly with ginseng and herb formula specially prepared for me. Only side effect was hip pain and poor doctor couldn't understand.

    Good luck with your decision, it is really up to you.
    Jana
  • maggie_wilson
    maggie_wilson Member Posts: 596
    radiation or not???
    bea,

    after 6 rounds of chemo, i had 6 different doctors say 6 different things about whether i should have radiation, how much radiation, where the radiation should be, etc.: my gyn-onc recommeded only the minimal brachey therapy, saying more radiation would be too toxic, and he's an aggressive doctor. my chemo doctor recommended a little more radiation, my second opinion gyn-onc recommended full pelvic and abdominal radiation, two radiologists recommended different amounts of radiation, and the tumor board of my hospital recommended no radiation, and convinced my chemo doctor. so i have done no radiation, and am glad of it. i'm over a year post surgery, and 8 months post chemo. i had a ct scan that showed a slightly enlarged periaortic node--my chemo doctor thinks it could be cancer, my acupuncturist thinks it isn't cancer, and the charge nurse at the oncology center thinks it's probably scar tissue. so--taking a wait and see approach. still glad i didn't do radiation--and, if at some point i ever need or want it, it's always there.

    hope this helps a little. best of luck to you,

    sisterhood,
    maggie
  • Kaleena
    Kaleena Member Posts: 2,059
    Questions regarding radiation
    Hello Bea:

    I was diagnosed with Grade 2 Stage ii/iiia endo adenocarcinoma back in 2005. All washings and everything were negative after my staging surgery. I did do chemo as a precaution. My gyn/onc wanted me to have both pelvic radiation and bracy radiation. My radiation onc advised against the pelvic saying that the risks outweighed the benefits. So I ended up with just three treatments of bracy radiation back in August of 2006.

    Recently, they thought I had a recurrence and wanted me to have chem. I changed doctors and then they wanted me to have radiation. Once you have radiation to a certain area, you can no longer have it. I would ask the doctor if that is the same for you. I did not have either. I went to another doctor who did surgery and found everything to be negative!

    The chemo they wanted me to take (even as a preventative) was Taxol. I was allergic to that so I took a lesser one, Gemzar (you don't lose your hair).

    The doctors are not sure of the long term effects of radiation. Just ask them. Some problems associated with brachy is a build up of scarring or bowel blockages later on.

    I hope this give you some insight on what to ask your doctors.

    Kathy
  • bea-mil
    bea-mil Member Posts: 108
    culka said:

    Beatka
    I understand and you have no idea how mad I am with myself about doing radiation. I was in pain for 19-20 months. Doctors ignored it, only my family doctor told me that he has no idea what to do. Maybe because we are from the same country.
    I resolved that problem with my funny anti-cancer diet and I hope that it will not come back in any form. What I am saying quality of life and length of life is not the same. Due to our awesome Canadian health care I`m out of cancer circle of care, only our family doctor is available. And if anything start again, with their speed (making appointment with cancer doctor), it will be too late for anything.
    And frankly I would preferred life without doctors appointments and tests and waiting time and more radiation....

    My herbalist/acupuncturist is my husband and that time I could not get straight answer from him, what he will be doing. After I said yes and he order "anti-radiation herbs", he finally answered me "I will never let them do it to me".

    During radiation I was taking 12g of vit C, 3x 400 IU of vit E, B-komplex, some vit D, royal jelly with ginseng and herb formula specially prepared for me. Only side effect was hip pain and poor doctor couldn't understand.

    Good luck with your decision, it is really up to you.
    Jana

    Culka
    Hi
    Good to hear from you again. Your opinions are very helpful. My husband and I were exactly like your husband. But my perspective changed along with the diagnosis of the cancer. When we are healthy we think that we know what will do, but when we are sick we just simply look for help even though sometimes it is a wrong direction. I was living such a healthy active life; eating organic food, no smoking, no drinking (except glass of wine with dinner), meditating, when I had some minor health issues I was taking reiki, acupuncture or reflexology treatments instead of going to the doctor. Right now I just don’t want to be responsible for the decision because either way I go, I know that there is a chance that I will regretted (side effects of radiation if I take the treatment or cancer recurrence if I don’t take the treatment, plus few other options). Besides all of this I don’t really trust the doctors. Every one of them tells different stories. I’ve got two different diagnoses after my surgery. Pathologists from the hospital when I had the surgery staged my cancer as 1B but my gynaecologist asked for the second opinion “better” specialists from PMH in Toronto and now I have 3A. I couldn’t believe that any pathologist can’t see if the cancer is into half way of the uterus wall or passed it over. I’ve got the “good” explanation, the grade of cancer is 1/2 and they couldn’t tell the difference between normal cell and mutant one. They offer me to be a part of a trial and have a chemo before, during and after the radiation, but I couldn’t apply for that (I was more than 8 weeks after the surgery-thank God), so the doctor said that I will have a chemo first and 25 external radiations. After their meeting/consultation with gyn/onco, radio/onco and pathologists they have decided that I’m not a high risk and a radiation only will be enough (doctor said that my prognosis are good). If I had 1B I wouldn’t do the radiation but with 3A I DON’T KNOW. I’m too afraid of the consequences’ of my decision. Are you from GTA?
  • jazzy1
    jazzy1 Member Posts: 1,379
    What to do?
    I never had the option of no radiation or chemo as conversed with both oncologists (chemo & radia). I'm 3C with a more aggressive cancer in the uterus but it was found in 1 pelvic lymph node to be a lesser type cancer. My doc explained that during total hysterectomy that can "assume" he pulled the best 24 lymph nodes to test and didn't see any other cancer lerking. To be on safe side they setup for chemo first to zap all over and in middle 33 sessions of pelvic, external radiation and ended with 3 more rounds of chemo. Explained to me that since only cancer found was in the 1 pelvic node they needed to be more aggressive on that area with radiation. I followed their leads as both were on same page.

    I will say the radiation left some pelvic pain which now understanding possibly arthritis, but believe me it's not that bad.....btw I'm approached 12 months since last treatment and NED today. Before the treatments started I had a bone density that showed thinning at head of hip area, which is most likely this pain area now.

    No one can tell you what to do, but we can relay our cancer diagnosis and the treatments our docs recommended and then our side affects.

    My doc told me if I didn't have cancer in pelvic area most likely wouldn't need ANY TREATMENTS.

    Best to you in your decision...
    Jan
  • daisy366
    daisy366 Member Posts: 1,458
    jazzy1 said:

    What to do?
    I never had the option of no radiation or chemo as conversed with both oncologists (chemo & radia). I'm 3C with a more aggressive cancer in the uterus but it was found in 1 pelvic lymph node to be a lesser type cancer. My doc explained that during total hysterectomy that can "assume" he pulled the best 24 lymph nodes to test and didn't see any other cancer lerking. To be on safe side they setup for chemo first to zap all over and in middle 33 sessions of pelvic, external radiation and ended with 3 more rounds of chemo. Explained to me that since only cancer found was in the 1 pelvic node they needed to be more aggressive on that area with radiation. I followed their leads as both were on same page.

    I will say the radiation left some pelvic pain which now understanding possibly arthritis, but believe me it's not that bad.....btw I'm approached 12 months since last treatment and NED today. Before the treatments started I had a bone density that showed thinning at head of hip area, which is most likely this pain area now.

    No one can tell you what to do, but we can relay our cancer diagnosis and the treatments our docs recommended and then our side affects.

    My doc told me if I didn't have cancer in pelvic area most likely wouldn't need ANY TREATMENTS.

    Best to you in your decision...
    Jan

    decision
    Chester (my new reference to the disease I as diagnosed with in Sept 2008) was UPSC stage 3a - aggressive and rare type of endometrial cancer. I had 6 rounds of carbo/taxol and then scans to determine next course of treatment.

    Re: radiation. My doc did not recommend. It's interesting because I actually lost my first gyn-onc when he moved out of the area. He told me he would recommend radiation. But I was transferred to the head of the practice who is very respected in this field and he said "the science didn't warrant radiation for me". Don't know exactly what would have made him say yes - but I figured he knows what he is doing and so far I think that was the best thing. I read stories of bad recurrence with people who had all the aggressive treatment with the thinking that they are killing every last cancer cell only to have it come back viciously NO MATTER THE STAGE!!!!! Even stage 1!!

    So my crap shoot theory holds. Maybe it's all "luck" or intuition, or a flip of the coin. Don't know!!

    My doc is clearly recommending the least harmful treatment for me - allowing my body to heal and me to tell him if something is different. I think this approach makes sense. He wants me to "forget" about Chester and enjoy life. So I'm doing my best with this.

    For the last 2 months I have eaten the "anticancer" way. I have lost weight (good loss) and feel great. Hopefully, like Claudia, I will make my body inhospitable to Chester and any of his buddies!!

    Best wishes to you and all. Sisterhood!! Mary Ann
  • MoeKay
    MoeKay Member Posts: 354 **
    daisy366 said:

    decision
    Chester (my new reference to the disease I as diagnosed with in Sept 2008) was UPSC stage 3a - aggressive and rare type of endometrial cancer. I had 6 rounds of carbo/taxol and then scans to determine next course of treatment.

    Re: radiation. My doc did not recommend. It's interesting because I actually lost my first gyn-onc when he moved out of the area. He told me he would recommend radiation. But I was transferred to the head of the practice who is very respected in this field and he said "the science didn't warrant radiation for me". Don't know exactly what would have made him say yes - but I figured he knows what he is doing and so far I think that was the best thing. I read stories of bad recurrence with people who had all the aggressive treatment with the thinking that they are killing every last cancer cell only to have it come back viciously NO MATTER THE STAGE!!!!! Even stage 1!!

    So my crap shoot theory holds. Maybe it's all "luck" or intuition, or a flip of the coin. Don't know!!

    My doc is clearly recommending the least harmful treatment for me - allowing my body to heal and me to tell him if something is different. I think this approach makes sense. He wants me to "forget" about Chester and enjoy life. So I'm doing my best with this.

    For the last 2 months I have eaten the "anticancer" way. I have lost weight (good loss) and feel great. Hopefully, like Claudia, I will make my body inhospitable to Chester and any of his buddies!!

    Best wishes to you and all. Sisterhood!! Mary Ann

    In my case, while a surgical
    In my case, while a surgical stage 1C (I was diagnosed in 1999 under the old staging system--under the recently revised system I would be a stage 1B), my gyn-onc recommended radiation for several reasons. First, my tumor was deeply invasive, having penetrated more than 80% of my myometrium or uterine muscle wall. Second, I had extensive lymph-vascular space invasion. Third, my tumor arose in the lower uterine segment. Fourth, I had a fairly large tumor, approximately 4 cm.

    So my take on this subject is that you can't just look at the stage of the cancer as a barometer for whether it is in your best interests to get radiation. You can have a more advanced stage without having all those risk factors for local or regional recurrence, or you can be a lower stage with significant risk factors for local or regional recurrence, such as in my case. Interestingly, a number of my risk factors are not even reflected in either the old or new staging systems, but were listed on my surgical pathology report, and formed the basis for my gyn-onc's radiation recommendation.

    So it is important to know precisely why your gyn-onc is recommending radiation. I would also want to know what your gyn-onc thinks your chances of recurrence are with and without the radiation. I would also want to know what the impact of radiation might be on any other existing health issues you might have.

    As far as your concerns about the effects of radiation, you can find stories about people who sailed through radiation and stories about people who had a variety of problems. It all depends on which stories you want to focus on. There are simply no guarantees in life about anything. Some people take medication and have no side effects, others have major side effects. I finished internal and external radiation in August 1999. We usually take our vacation around Labor Day. I thought I would be sitting on the porch in a rocking chair for the week. Needless to say, I was able to do and eat anything I wanted by that time.

    Best of luck to you.

    Maureen
  • clscurnutt
    clscurnutt Member Posts: 26
    I can't tell you how much I
    I can't tell you how much I empathize with your dilemma. I, too, had the same feelings as you do about radiation treatment. It went against everything in my being. I cried about it. I read articles on the internet about it. I got angry about it. I didn't care for my radiation oncologist. I was a mess. My internist even gave me some sample anti-depressant medication if I needed it.

    I went ahead with the treatment. Each day I would try to buck up and be positive. Then the stupid machine would start the buzzing around my body. I came to hate the sound with a passion. There were times I would start crying while the treatment was going on. The technicians were wonderful, though. ( I need to remember to tell them how grateful I am for them the next visit to the clinic) Some days were better than others.

    I am not a religious person by any stretch of the imagination. But I am spiritual. What gets me through it all is faith in myself. Faith that I can put my body in the hands of others who were truly doing the best they can for me. I still carry that faith that I can get through anything that comes up. I still worry about the long-term effects the radiation may have on my body. But I cant' dwell on it (wellllll... maybe some days when I need a pity party).

    Life is precious. You have to make your own decision. Whatever you decide, stay as healthy as possible. Eat better. Face each new day as a gift. You are so in my thoughts right now.

    Lynn
    Never give up! Never surrender!
  • dkmyers9935
    dkmyers9935 Member Posts: 1

    I can't tell you how much I
    I can't tell you how much I empathize with your dilemma. I, too, had the same feelings as you do about radiation treatment. It went against everything in my being. I cried about it. I read articles on the internet about it. I got angry about it. I didn't care for my radiation oncologist. I was a mess. My internist even gave me some sample anti-depressant medication if I needed it.

    I went ahead with the treatment. Each day I would try to buck up and be positive. Then the stupid machine would start the buzzing around my body. I came to hate the sound with a passion. There were times I would start crying while the treatment was going on. The technicians were wonderful, though. ( I need to remember to tell them how grateful I am for them the next visit to the clinic) Some days were better than others.

    I am not a religious person by any stretch of the imagination. But I am spiritual. What gets me through it all is faith in myself. Faith that I can put my body in the hands of others who were truly doing the best they can for me. I still carry that faith that I can get through anything that comes up. I still worry about the long-term effects the radiation may have on my body. But I cant' dwell on it (wellllll... maybe some days when I need a pity party).

    Life is precious. You have to make your own decision. Whatever you decide, stay as healthy as possible. Eat better. Face each new day as a gift. You are so in my thoughts right now.

    Lynn
    Never give up! Never surrender!

    Thank you for sharing your
    Thank you for sharing your experience. I learned today that I will need both chemo and radiation. Still trying to absorb it all. Any suggestions on reading material?
  • bea-mil
    bea-mil Member Posts: 108

    Thank you for sharing your
    Thank you for sharing your experience. I learned today that I will need both chemo and radiation. Still trying to absorb it all. Any suggestions on reading material?

    I can suggest "Natural Strategies for cancer Patients" by Russell L. Blaylock. It tells how to minimize the side effects of chemo and radiation and increase the benefits of these treatments. Good for someone who is not afraid to combine conventional treatments with alternative approaches.
  • bea-mil
    bea-mil Member Posts: 108

    I can't tell you how much I
    I can't tell you how much I empathize with your dilemma. I, too, had the same feelings as you do about radiation treatment. It went against everything in my being. I cried about it. I read articles on the internet about it. I got angry about it. I didn't care for my radiation oncologist. I was a mess. My internist even gave me some sample anti-depressant medication if I needed it.

    I went ahead with the treatment. Each day I would try to buck up and be positive. Then the stupid machine would start the buzzing around my body. I came to hate the sound with a passion. There were times I would start crying while the treatment was going on. The technicians were wonderful, though. ( I need to remember to tell them how grateful I am for them the next visit to the clinic) Some days were better than others.

    I am not a religious person by any stretch of the imagination. But I am spiritual. What gets me through it all is faith in myself. Faith that I can put my body in the hands of others who were truly doing the best they can for me. I still carry that faith that I can get through anything that comes up. I still worry about the long-term effects the radiation may have on my body. But I cant' dwell on it (wellllll... maybe some days when I need a pity party).

    Life is precious. You have to make your own decision. Whatever you decide, stay as healthy as possible. Eat better. Face each new day as a gift. You are so in my thoughts right now.

    Lynn
    Never give up! Never surrender!

    My decision
    I had finally made my decision. NO radiation treatment for me, at least not now. I’ll keep you girls updated how I’m doing. And thank you so much for those who responded and helped with my decision.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    bea-mil said:

    My decision
    I had finally made my decision. NO radiation treatment for me, at least not now. I’ll keep you girls updated how I’m doing. And thank you so much for those who responded and helped with my decision.

    bea mil

    i'm glad you made a decision, and frankly am glad you made the decision you did. as we've said, you can always choose radiation at some later time--it's always there as an option. yes, keep us posted.
    sisterhood,
    maggie
  • culka
    culka Member Posts: 149
    bea-mil said:

    My decision
    I had finally made my decision. NO radiation treatment for me, at least not now. I’ll keep you girls updated how I’m doing. And thank you so much for those who responded and helped with my decision.

    Bea
    congratulation and again where are you from (I know from Canada, but originally?)
  • RoseyR
    RoseyR Member Posts: 471
    culka said:

    Beatka
    I understand and you have no idea how mad I am with myself about doing radiation. I was in pain for 19-20 months. Doctors ignored it, only my family doctor told me that he has no idea what to do. Maybe because we are from the same country.
    I resolved that problem with my funny anti-cancer diet and I hope that it will not come back in any form. What I am saying quality of life and length of life is not the same. Due to our awesome Canadian health care I`m out of cancer circle of care, only our family doctor is available. And if anything start again, with their speed (making appointment with cancer doctor), it will be too late for anything.
    And frankly I would preferred life without doctors appointments and tests and waiting time and more radiation....

    My herbalist/acupuncturist is my husband and that time I could not get straight answer from him, what he will be doing. After I said yes and he order "anti-radiation herbs", he finally answered me "I will never let them do it to me".

    During radiation I was taking 12g of vit C, 3x 400 IU of vit E, B-komplex, some vit D, royal jelly with ginseng and herb formula specially prepared for me. Only side effect was hip pain and poor doctor couldn't understand.

    Good luck with your decision, it is really up to you.
    Jana

    Your Hip Pain

    Culka,

    YOu say your only effect of radiation was some hip pain. Do you still live with it--and how bad is it? Ostensibly from the radiation? (I need to make a decision this week about how much radiation to have.)

    Thanks,
    Rosey R.
  • culka
    culka Member Posts: 149
    RoseyR said:

    Your Hip Pain

    Culka,

    YOu say your only effect of radiation was some hip pain. Do you still live with it--and how bad is it? Ostensibly from the radiation? (I need to make a decision this week about how much radiation to have.)

    Thanks,
    Rosey R.

    Rosey
    I left message for you on long-term side effects.

    No I don't have pain there any more, but muscles on my but are still tender. I guess I will have to repeat fast again.