Any stage 3ers deny radiation?

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breathe
breathe Member Posts: 17
edited February 2015 in Stage III Breast Cancer

First, hello! I was diagnosed back in July and have never posted on the boards before. I finished chemo and will start radiation after recovering from my exchange surgery next week. I am stage IIIa, grade 2 with a bmx. I was given 4 rounds of CMF and 12 of Taxol. If it weren't for struggling with the whole mortality thing I'd say I'm doing great through the treatments. Here's my story. I had Hodgkins when I was 17. I am now 42 and fighting bc. Problem is I already had radiation when I was young, which likely caused the bc. My doctors didn't want to radiate again but when I turned up as stage 3 they feel they have to. All the problems we face by having radiation scare me. They really scare me when you add having been radiated twice! I'm being seen at Memorial Sloan and the board recommends that I have proton radiation. It will hit less of the areas that don't need to be radiated (like my heart and lungs). Problem is it's experimental and my insurance company is known for turning it down. I'm trying to wrap my head around it all. I'm feeling like I don't want standard radiation at all if Proton gets turned down. Has anyone here even considered not doing the radiation? I have young children and my goal is of course being around as long as possible, but also having good quality years. UGH breast cancer sucks!! Looking forward to hearing others stories. Really looking forward to anyone that might have a similar past.

Comments

  • weesa
    weesa Member Posts: 707
    edited February 2015

    Wow--you are in a tough place. If I were in your shoes (I had radiation) I would want to know more about my cancer. If it is er and pr positive, is it Luminal A or Luminal B (which carries a worse prognosis)? Or are you triple negative? What is your Ki-67? What do your tumor markers say right now? How bout her-2 status?

    What is your estradiol level right now doing a sensitive assay?

    If you are er and pr positive what are you going to do--remove ovaries, take tamoxifen etc. I can certainly understand your hesitation about radiation twice. Fortunately for me my radiation was on the right side, but having had a mastectomy prior to radiation, I am sure that side got damaged. In fact, I know it did--my right lung was scorched. I had radiation pneumonitis for a while.

    I hope somebody will come along in a similar situation as yours. The collective wisdom here is amazing, so stick with us!

  • Annette_U
    Annette_U Member Posts: 111
    edited February 2015

    I agree with Weesa, find out specifics and your Doctor can go to bat for you with the insurance to get you proton if needed.You can get more rads in a lifetime then once for other things. Do ask about ki and other stats on your cancer. I hope it all works out, sounds like you are doing all that you can for it.

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