To radiate or not to radiate that is the question

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LiveWellToday
LiveWellToday Member Posts: 35
edited August 2018 in Radiation Therapy - Before, During, and After

Dear friends, I am so glad I have this community for help and guidance. I was diagnosed two months ago. Three tumors--bilateral and 2 on left. Onctoype scores of 6,8, and 10. Size 1.4, 1.4 and .9 and grade 1 to 2. Only one of 4 nodes micromets (.4m) on the left breast. Two areas of small LVI on the left breast. I have had a bilateral mastectomy. The radiation oncologist at the No 2 cancer center in the USA says my chance of recurrence is 10 to 15% LOCALLY and if I radiate the nodes and chest wall, it goes down to 5%. My local oncologist thinks only 10% chance of recurrence LOCALLY which decreases to 5% with radiation. He thinks toxicity of radiation not worth the benefits. My local oncologist thinks chances are lower and I should just not radiate and if it locally recurs, then just have the tumor surgical removed. I am only 46 and otherwise extremely healthy and so should be able to deal with the radiation impact on heart, lungs and thyroid (recall Left side). All radiation oncologists are making educated guesses since they have no studies that address micrometasis in the nodes & recurrence. If I radiate then risks of implant problems are also a consideration. My highest Oncotype score of 10 predicts 5 year distant recurrence rate is 4% and 10 year distant recurrence rate is 7%. There is some correlation between low Oncotype scores and local recurrence but that is not yet well-accepted in the medical community. How should I approach this?

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  • JosieO
    JosieO Member Posts: 314
    edited July 2018

    LiveWellToday,

    Gosh, I read your well-written statement above and I thought that your situation is challenging.

    I have some correlation to your situation (left side, 1 tumor and some DCIS, one cancerous lymph node), but I don’t share others (I had a lumpectomy, no chemo (MammaPrint instead of Oncotype).

    I did have radiation to clean up any stray cancer cells, especially because of the lymph node.

    What I wanted to say to you was that my radiation was extremely well-planned, and I didn’t get major side effects until the last few days of the boost (primarily skin ulceration). Otherwise no fatigue, nausea-nothing like that.

    Could you possibly get from your radiation oncologist more detail on how he/she would plot your radiation? Can they use IMRT (intensity modulated radiation therapy), which as I understand creates a targetedset of smaller beams? Can they use a shorter course/ fewer sessions? How can they protect your heart/lung/thyroid?

    I see a number of different percentages, but I wonder if they can all agree on the effects you can minimize.

    Will be thinking good thoughts for you.

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited July 2018

    LiveWell, good morning. You don't say if you are ER and PR positive, but if you are and you plan to take anti-hormone medication that might help you decide. For example if you are 95 percent ER positive, Tamoxifen or an AI would work very well and you could skip radiation. But if you are only 10 percent ER positive, you might opt to do radiation. Just a thought.

    It does sound like you would tolerate radiation well. Another option I guess would be to only do a short course of radiation; your RO would have thoughts on that.

    Best of luck.

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  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited July 2018

    thanks for the replies. I am 95 percent ER and PR positive. I think I agree that endocrine therapy would take care of stray cells but drs don’t know if the endocrine therapy kills all cells or makes them dormant. My local rad onc isn’t a fan of IMRT but my rad onc in the main cancer center would do it but I don’t want to leave my 9 and 11 year old kids fo 5 weeks orb radiation

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  • JosieO
    JosieO Member Posts: 314
    edited July 2018

    LiveWellToday,

    Agree with your note re ER/PR as Georgia raised it. I am highly responsive as well, and know that there is no assurance on “kill vs dormant”. I have confidence in my team, so I did do radiation.

    I continue to keep you in my thoughts and wish you good results however you decide

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  • Palesa2018
    Palesa2018 Member Posts: 140
    edited August 2018

    Hi Livewelltoday, I too had implants put in, a low Oncotype score, 12. I'm scheduled for radiation and have decided to go ahead with it because experienced ROs can do planning such that they avoid harming the major organs. That said, mine is on the right only. I will be on Tamoxifen and Zoladex. My decision on radiation was based on extra precaution after RO said they can never be 100% certain about total removal on cancer cells in surgery and some of my margins were close.

    All the best, please share how it goes.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2018

    My oncologist thinks the anastrozole would kill the stray cells starve them I guess.

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  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited August 2018

    I am doing radiation but lots of experts think it isn't needed but some think it is. I have deep doubts and stay up at night regretting my decision. I am 2 or 5 weeks into radiation. I worry about secondary cancers and heart risk from it. I know my plan is good as I have one of the world's top rad onc but we can never be sure of long term effects. Ours docs don' t tell us but read it on pub med or other places

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  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited August 2018

    Meow13hi. It seems really aggressive for them to give you PMRT radiation just for close margins. What other issues do you have? Please know you have 50 percent chance of major implant complications and if you don't have that they will still be pulled higher up than the non radiated side.

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  • Dhanno
    Dhanno Member Posts: 104
    edited August 2018

    hi LiveWellTod…

    are your margins clear after mastectomy ?

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  • LiveWellToday
    LiveWellToday Member Posts: 35
    edited August 2018

    yes. Margins are cleqr

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