NOT TO DO RADIATION

me2
me2 Member Posts: 20
edited March 2014 in Breast Cancer #1
I'M INTERESTED TO KNOW IF ANYONE DECIDED NOT TO DO RADIATION AFTER THE DR RECOMMENDED IT?

Comments

  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    Not me. I did radiation to other breast after they removed a 4 mm spot. They said I didn't need radiation, but I said zap it anyway! Course I had lumpectomy's and still had lots of tissue for the little cancer critters to be hiding in, so I wanted them to burn baby burn!
    Why are you hesitant to do radiation? Maybe that would help me understand your question better.
    (((HUGS))) hummingbyrd
  • me2
    me2 Member Posts: 20

    Not me. I did radiation to other breast after they removed a 4 mm spot. They said I didn't need radiation, but I said zap it anyway! Course I had lumpectomy's and still had lots of tissue for the little cancer critters to be hiding in, so I wanted them to burn baby burn!
    Why are you hesitant to do radiation? Maybe that would help me understand your question better.
    (((HUGS))) hummingbyrd

    I had a mastcetomy in hopes of not having radiation. My surgeon & onocologist said it was in the gray area and was really surprised when I told them the radiologist said 7 week of treatments. She hadn't even looked at my charts and was already telling the nurse to make me an appointment to start next week. I have several friends that have had bad experiences from radiation. An Aunt that has permanent lung damage, a friend that had gotten it too strong and has permanent damage, a cousin that died from brain cancer, they had been treating the wrong spot.
  • jeancmici
    jeancmici Member Posts: 665 Member
    me2 said:

    I had a mastcetomy in hopes of not having radiation. My surgeon & onocologist said it was in the gray area and was really surprised when I told them the radiologist said 7 week of treatments. She hadn't even looked at my charts and was already telling the nurse to make me an appointment to start next week. I have several friends that have had bad experiences from radiation. An Aunt that has permanent lung damage, a friend that had gotten it too strong and has permanent damage, a cousin that died from brain cancer, they had been treating the wrong spot.

    Before my surgery I saw one surgeon who did not do radiation with a mastectomy and the next said he did because there was still tissue there.

    So it's your call I guess. If you want my thought for myself with hindsight which is almost always 20/20, had I had a mastectomy I would have skipped the radiation.

    Remember the radiation oncologist thinks in terms of radiation - your oncologist and surgeon might help you make the final decision more objectively - and please let us know the rest of your story.

    Good Luck!
    Jean
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member
    me2 said:

    I had a mastcetomy in hopes of not having radiation. My surgeon & onocologist said it was in the gray area and was really surprised when I told them the radiologist said 7 week of treatments. She hadn't even looked at my charts and was already telling the nurse to make me an appointment to start next week. I have several friends that have had bad experiences from radiation. An Aunt that has permanent lung damage, a friend that had gotten it too strong and has permanent damage, a cousin that died from brain cancer, they had been treating the wrong spot.

    I know one thing before I made any decision with that radiologist I'd be getting a second opinion. Most everyone I know with mastectomy's did not require radiation. It's particularly unprofessional for her to order radiation without even looking at your chart.
    I was blessed with an excellent Rad Onc MD. Thankfully he was very patient too because I grilled them on how they prevented lung damage, calculated my dosage and reduced risk for permanent damage to the heart and esophagus.
    If done properly they shoot tangents or angles of x-ray beams. This method hits the surface, but very little below, which minimizes damage to other areas. I did take 33 treatments which was about 6-7 weeks M-F. I'm glad to see you stand up for yourself and ask questions. MD's do make mistakes. They are human, some just have to be reminded on occasion! LOL
    May God bless you and guide you to the right choice.
    (((HUGS))) hummer
  • inkblot
    inkblot Member Posts: 698 Member
    Hello Me2:

    It's perfectly natural to want to protect your body from any and all unnecessary rad exposure.

    I'd follow the advice of Jean and Hummbyd and get a 2nd opinion. Even a third if you still don't feel confident enough to make a decision at that point.

    There's a new facility near me which now utilizes PET when marking for radiation treatments in order to eliminate heart/lung damage. I think this sounds wonderful and has to be very reassuring to women with bc, particularly of the left breast! My radiation was to the left breast and this facility was not, unfortunately, up and running almost two years ago, at the time of my treatment.

    I was told by my rad onc that the rads would cut across approximately 1cm of my heart. I was adamant with him regarding my concerns about heart/lung exposure. I was also concerned about the axillary rad exposure. My surgeon called the rad onc to get details and reassure me that the exposure would be extremely minimal. That was funny because these two docs did not know one another and their practices were almost two hours apart, as the crow flies! At any rate, that the rads would reach any part of my heart was frigtening to me as I under stood that radiation induced tissue necrosis is not a good thing at all. However, it's almost two years later and I've had several echo cardiograms and nuclear stress tests and have no signs of any damage. Also, on my yearly chest x-rays, everything looks perfect. It truly is amazing how our bodies can absorb and handle insults!

    www.nci.nih.gov has some good info on long term rad effects regarding bc, which may help to calm some of your concerns. I think the first thing you need to do though, is to get another opinion to determine if there is really any solid indications for you to even have radiation and only bother with the research if needed.

    Good luck and take your time in being certain that you're confident in your ultimate decision.

    Love, light and laughter,
    Ink
  • bullfrog13
    bullfrog13 Member Posts: 213
    Dear Me2
    I never knew it was an option.... doc told me were gonna do it... and I never questioned it. I did NOT know I could do that? Im such a dewb I guess. Looking back I guess I still would have done it. Any percentages of it NOT returning are worth the effect to me. I understand from reading your 2nd post why you'd be questioning it.
    Good luck and God Bless
    [email protected]
  • jake10
    jake10 Member Posts: 202
    inkblot said:

    Hello Me2:

    It's perfectly natural to want to protect your body from any and all unnecessary rad exposure.

    I'd follow the advice of Jean and Hummbyd and get a 2nd opinion. Even a third if you still don't feel confident enough to make a decision at that point.

    There's a new facility near me which now utilizes PET when marking for radiation treatments in order to eliminate heart/lung damage. I think this sounds wonderful and has to be very reassuring to women with bc, particularly of the left breast! My radiation was to the left breast and this facility was not, unfortunately, up and running almost two years ago, at the time of my treatment.

    I was told by my rad onc that the rads would cut across approximately 1cm of my heart. I was adamant with him regarding my concerns about heart/lung exposure. I was also concerned about the axillary rad exposure. My surgeon called the rad onc to get details and reassure me that the exposure would be extremely minimal. That was funny because these two docs did not know one another and their practices were almost two hours apart, as the crow flies! At any rate, that the rads would reach any part of my heart was frigtening to me as I under stood that radiation induced tissue necrosis is not a good thing at all. However, it's almost two years later and I've had several echo cardiograms and nuclear stress tests and have no signs of any damage. Also, on my yearly chest x-rays, everything looks perfect. It truly is amazing how our bodies can absorb and handle insults!

    www.nci.nih.gov has some good info on long term rad effects regarding bc, which may help to calm some of your concerns. I think the first thing you need to do though, is to get another opinion to determine if there is really any solid indications for you to even have radiation and only bother with the research if needed.

    Good luck and take your time in being certain that you're confident in your ultimate decision.

    Love, light and laughter,
    Ink

    There are rad/oncol centers out there that have technology that can pinpoint the rads so fine that damage to the heart and lungs will become a thing of the past. Sure they will probably distroy something else but your heart and lungs will be safe.
    Get another opinion and research the new technology. I am like humm, I wanted every chance and I wanted those cancer cells gone, gone, gone. However, after 2 opinions of no rad, I had no rad. I had a very small tumor 0.6cm with no lymph and neg Her2...... Follow up mammo shows nothing brewing and self exams are clear.
    Good luck and be kind to yourself, make your decision with the info available and then put it behind you. I know it is not easy but it is doable. Beth
  • jeancmici
    jeancmici Member Posts: 665 Member

    Dear Me2
    I never knew it was an option.... doc told me were gonna do it... and I never questioned it. I did NOT know I could do that? Im such a dewb I guess. Looking back I guess I still would have done it. Any percentages of it NOT returning are worth the effect to me. I understand from reading your 2nd post why you'd be questioning it.
    Good luck and God Bless
    [email protected]

    I don't remember if you had lumpectomy but there is no choice with lumpectomy - radiation goes along with it. Of course you can refuse anything you don't want regardless of what is advised.
  • me2
    me2 Member Posts: 20
    Thanks for everyone's input it helped me to feel good about my decision. To let you know today I did my first follow-up after chemo with my onocologist. I really expected to hear that she questioned my decision but quite the opposite. She agreed that she would not have recommended radiation but she did not want to influence my decision and wanted me to know all the facts from the radiologist. I also asked my surgeon when I went to have my port taken out, she also agreed that where it was and with the mastcetomy she probably wouldn't have recommended it either. Like someone said I didn't know you could say no either but after a lot of prayer and research I didn't have the assurance that I needed it. Thanks again for everyone's input!