Radiotherapy was my biggest mistake

Options
Orrickstein
Orrickstein Member Posts: 2
edited March 2014 in Breast Cancer #1
I wish I had to do it over again. I was afraid to research it on my own and simply took the advice I was given and followed the treatment plan. Only after living with the side effects did I sit down and do some reading. It was all there, right in front of me. If you are told that radiotherapy is the way to go I suggest you read, Cancer: we live and die by radiation, or one of the other related books so that you know exactly what you are getting yourself into with radiotherapy.

Comments

  • seof
    seof Member Posts: 819 Member
    Options
    Thanks for sharing. Is there anything specific that you feel able to share that we should watch for? They have recommended radiation for me after chemo, surgery, and possibly chemo again. More info is always a good thing in my book. seof
  • LesleyH
    LesleyH Member Posts: 370
    Options
    I'm sorry you are feeling like this. Do you mean radiation? I have not read the book and I really don't intend to. It is written by 2 engineers, not doctors. I think we need to look at all the research over the last 50 or so years on radiation treatment. The reason it is still being done is because it is very effective. It prevents cancer cells from dividing. It does have long-term risks for sure, but I am more anxious that I get through the next 10 years than worry about the consequences 20 years down the road. And the evidence is definitely there that radiation is effective.

    Hugs.

    Lesley
  • LesleyH
    LesleyH Member Posts: 370
    Options
    LesleyH said:

    I'm sorry you are feeling like this. Do you mean radiation? I have not read the book and I really don't intend to. It is written by 2 engineers, not doctors. I think we need to look at all the research over the last 50 or so years on radiation treatment. The reason it is still being done is because it is very effective. It prevents cancer cells from dividing. It does have long-term risks for sure, but I am more anxious that I get through the next 10 years than worry about the consequences 20 years down the road. And the evidence is definitely there that radiation is effective.

    Hugs.

    Lesley

    Ah yes. I see that radiation therapy is also called radiotherapy. Interesting. I never heard it called that.
  • chenheart
    chenheart Member Posts: 5,159
    Options
    I had surgery, chemotherapy AND radiation~ of course there were side effects! And, in my opinon, the GEARTEST side effect of all of these "indignites" to my body is that I am alive 4.5 years later! I do not think that my doctors were money or greed-driven; they want to see me cancer-free and healthy. Not every treatment is right for every person, but I never felt I was being kept in the dark by my health care professionals.
    I am sorry your experience was not as positive...hopefully you won't be in the position to ever have to make a cancer-related decision again.
    I don't know how long ago your therapy was~I have found that the longer I am out of treatment, any lingering effects ( neuropathy for example) have disappeared. I hope this helps!
  • cabbott
    cabbott Member Posts: 1,039 Member
    Options
    Today's radiation is much different than was available even 10 years ago. Please be careful of what you read. If it has has time to go through the printing process, it is already outdated by 2 years even if it came out today. Today they can target the area that had the cancer so that considerably less radiation hits other vital organs like your lung or heart. The radiation treatment (whether the short intense course, long usual course, or very short kind they implant) prevents as many secondary cancers that potentially could crop up in 8 to 10 years. By targeting the spot very carefully, they can prevent unwanted life threatening side effects like damaged lung or heart tissue in the here and now. My dad just had radiation treatment for prostrate cancer. He is a white blonde. In spite of 7 1/2 weeks of radiation in a VERY sensitive area, he never even blistered. He hardly slowed down throughout treatment. I was very leary of radiation with lumpectomy until I read about the effects of surgery without radiation. Well, you can sometimes avoid radiation if you get "lucky" like me and get a mastectomy. I had no choice about the big operation (spread out cancer, no positive nodes). But if the cancer shows up on the other side and this time is localized rather than spread out all over the place, I will look for the best radiation clinic I can find and do a lumpectomy followed by radiation. The results in terms of long-term survival are comparable to mastectomy or better. And it is lots faster getting on a bra and easier on the body than reconstruction.
  • LesleyH
    LesleyH Member Posts: 370
    Options
    I did a little digging. It seems that the authors of Cancer: We live and die by radiation were actually employees of a large firm that made radiation equipment. One was fired and both have been involved in litigation with the company to the extent that they lost everything. I would be very wary of authors who had such an agenda.

    Hugs.

    Lesley
  • Orrickstein
    Orrickstein Member Posts: 2
    Options
    LesleyH said:

    I did a little digging. It seems that the authors of Cancer: We live and die by radiation were actually employees of a large firm that made radiation equipment. One was fired and both have been involved in litigation with the company to the extent that they lost everything. I would be very wary of authors who had such an agenda.

    Hugs.

    Lesley

    I don't understand why you are badmouthing the authors of a book that you admit not having even looked at? You also assume that the book is anti-radiation. Well you are wrong. The book you pick on supports the use of radiation and only cautions that it should be used judicially and there are side effects some of which are long term and scary. I for one am suffering as a result and if I had to do it again would not have had radiotherapy. I suggest that anyone considering radiation at least read from some book about the consequences. You should not be discouraging women with breast cancer from getting as much information as possible and from every available source, that's all I'm saying.
  • pmillr2000
    pmillr2000 Member Posts: 26
    Options
    Only one doctor, out of four that I talked to, felt that anything OTHER than mastectomy was an option for me. He was, of course, a radiation oncologist. I didn't choose radiation, having 3 other doctors (my GP, surgeon and another oncologist) telling me that mastectomy was truthfully the only choice for me, that's what I did. I don't regret my decision. The only thing I think I might do differently is to go ahead and have a double mastectomy, and be done with it (my right breast is still healthy). However, if I'm ever faced with the decision to make again, I will again, talk to as many different doctors, and again weigh all my options. And if radiation seems to be the best bet for my survival, that's where I'll be!
  • phoenixrising
    phoenixrising Member Posts: 1,508
    Options
    Sounds like you’ve experienced something you weren’t prepared for.
    I chose not to have radiation, but then I did have a mastectomy. They wanted to do a lumpectomy with radiation. I chose the mastectomy for a couple of reasons. One was so I wouldn’t have to have radiation. But due to the 1mm margin, they wanted to do it anyways. I was told it would give me a 10% benefit. I passed it up.

    People get annoyed (including my onc) when I look into and want to talk about the side effects. If I talk about the relationship between leukemia and chemotherapy, or heart/lung problems and radiation, they think I am focusing on the negative. Really ticks me off. I tell them that getting breast cancer was a small percentage too…I can’t afford not to look at the small percentages and assume that it could easily happen to me. In the end you’re the one left holding the bag and trying to deal with it. They all go home for the day.

    This is discouraging because in my view you can not make a proper decision unless you know all the facts. Properly assessing the risk/benefit ratio. They don’t think I am being positive by focusing on the “what if”. I don’t want anymore surprises. Being positive and thinking everything is going to be hunky dory hasn’t gotten me anywhere.


    I am sorry for whatever effects you may be feeling and hope that in time they will diminish and be forgotten.

    jan