1. < Breast Cancer

Deciding on radiation or not

Posted by frogjumper @frogjumper, May 17, 2023

So, I have been going back and forth about radiation now for awhile. I am trying to pursue Proton Beam which seems safe enough considering my tumor bed is directly over my heart. So for me I know I wont' do regular radiation. But this is what perplexes me and makes my decision difficult. Basically 3 out of 100 women like me will have a recurrence without radiation, with radiation 2 out of 100 will have a recurrence. I read that and think...is radiation worth it? bearing in my mind my tumor was low grade, tiny and no lymph nodes, clear margins and very well behaving, it actually decreased in size over 6 months prior to surgery.
Is it time to just walk away from treatment and enjoy my good fortune?
I'd appreciate any input.

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dick61 | @dick61 | Jul 6, 2023
In reply to @cherziggy "@dick61 Getting ready to start rad for stage 1 IDC lymph node + on Left breast...." + (show)
@cherziggy

@dick61
Getting ready to start rad for stage 1 IDC lymph node + on Left breast. Radiation oncologist is pushing rad and said proton is not used for breast and would be harder on my skin and the implant placed during reconstructing. They’re going to rad the lower lymph too.
I have access to proton in my area. I’m 69 and want to keep my heart and lungs safe for many more years of life. Thoughts?

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I had 16 proton beam radiation treatments to left chest and left axila--armpit, left upper side and from armpit to elbow. All done at MN Mayo. All MD's greenlighted the procedure. No cautions or warnings!! I had sunburned skin for4-5 weeks easily treated with Vanicream twice each day. I WOULD ask proton radiation oncologist about this issue because I think you have been given incorrect advice. Proton is the safest. I had no problems and am an old warhorse at 83+!! Blessings to you!

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Sue Ellen Murrey | @semurrey | Jul 6, 2023

Hi! Just weighing in with some feedback from MGH Boston as I met with proton beam team for second opinion as Dana Farber doesn't offer proton beam. At 57 yrs, ILC on right side (margins weren't great). Proton Beam was not recommended for my breast - biomarkers, etc all examined. I went with whole breast radiation (small breasts) -19 treatments with boost. I was so convinced proton beam was way to go but I will say the proton beam team was great at explaining why/how proton beam is not always the safest or best treatment. xoxoxo Good luck and I love this group!

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1 reply
salamander | @salamander | Jul 6, 2023
In reply to @boathouse "I am doing amazing! For my stage 3 HER2 diagnosis- my double mastectomy, radiation and additional..." + (show)
@boathouse

I am doing amazing!
For my stage 3 HER2 diagnosis- my double mastectomy, radiation and additional 14 rounds of chemo, gave me my life to move forward!
So, radiation was traditional but over my right breast. If over my left I would have done proton.
I have radiated skin and also had skin spraring so no nipple and fully reconstructed as of may 8th 2023.
I was kayaking today July 4th!
Yes, I have different feelings but….love my life and would have redid my plan if I had to do it over!!
20 months - just have courageous and meet your treatment plan -
I have no regrets! None of us think this is going to happen to us, Fit, healthy, energetic, and life was good!
However, we were diagnosed, stage 3 - move forward continue to live life and take on your treatment plan with your Doctors with the tenacious way we go after life. Is it easy NO, but you WILL be ok!
I am amazing and healthy after 9-28-21 to 6-30-2023
My new normal still has me being a Mom, friend, sister and now a new grandmother!
Plus never missed a day of work, as I love my work

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Did you take endocrine therapy?

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salamander | @salamander | Jul 6, 2023

@frogjumper so I am in your same boat (same diagnosis) I think. I decided not to take tamoxifen. My chances of recurrance are so low and I don’t think I can deal with side effects.
Any advice. Talking to a few more people on it but I am at peace with my decision.

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1 reply
frogjumper | @frogjumper | Jul 6, 2023
In reply to @salamander "@frogjumper so I am in your same boat (same diagnosis) I think. I decided not to..." + (show)
@salamander

@frogjumper so I am in your same boat (same diagnosis) I think. I decided not to take tamoxifen. My chances of recurrance are so low and I don’t think I can deal with side effects.
Any advice. Talking to a few more people on it but I am at peace with my decision.

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@salamander, I am at peace as well. Also too it makes me feel better knowing that a few other things are on my side, namely my good health, not smoking or drinking and now even going to the gym 🙂 My feelings were I don't have a high risk tumor so why throw high risk treatments at it.

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Mentor
Miriam, Volunteer Mentor | @mir123 | Jul 6, 2023
In reply to @wpglea "Your situation mirrors mine; cancer directly over the heart. Only full doses of radiation are recommended..." + (show)
@wpglea

Your situation mirrors mine; cancer directly over the heart. Only full doses of radiation are recommended for me, and I have continually said, "No", which really antagonizes the surgeon. Without radiation, the surgeon will only preform a radical mastectomy, even though I have had two surgeries last year (1. lumpectomy+ and removal of lymph nodes; 2. tissue removal on the heart muscle to achieve clear margins). If I agree to seven weeks of radiation, he will "snip" the current tumors which appeared along the lymph node incision, and I will save what is left of my breast. I have been warned of a possible heart attack.

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This sounds distressing. Can the surgeon really refuse treatment unless you agree to the radiation? Has a radiation oncologist weighed in? I was treated separately--first surgery, then referral. But I never promised to do any particular course of radiation or even any at all. (Did end up with 15 treatments). Might you need a second opinion, or a surgeon who is more willing to work with you as a person?

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wpglea | @wpglea | Jul 6, 2023

I'm considering exactly that option. I am awaiting date/time for oncologist's appointment, but he only sees his patients once a year.

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cherziggy | @cherziggy | Jul 7, 2023
In reply to @wpglea "Your situation mirrors mine; cancer directly over the heart. Only full doses of radiation are recommended..." + (show)
@wpglea

Your situation mirrors mine; cancer directly over the heart. Only full doses of radiation are recommended for me, and I have continually said, "No", which really antagonizes the surgeon. Without radiation, the surgeon will only preform a radical mastectomy, even though I have had two surgeries last year (1. lumpectomy+ and removal of lymph nodes; 2. tissue removal on the heart muscle to achieve clear margins). If I agree to seven weeks of radiation, he will "snip" the current tumors which appeared along the lymph node incision, and I will save what is left of my breast. I have been warned of a possible heart attack.

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I don’t understand tissue removal on the heart muscle. This sounds really scary. God bless you in your journey. I’m still trying to get a consult for proton therapy.

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wpglea | @wpglea | Jul 7, 2023

'Wishing you success in your search, and adding blessings and hope.

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svb | @svb | Jul 7, 2023
In reply to @cherziggy "@dick61 Getting ready to start rad for stage 1 IDC lymph node + on Left breast...." + (show)
@cherziggy

@dick61
Getting ready to start rad for stage 1 IDC lymph node + on Left breast. Radiation oncologist is pushing rad and said proton is not used for breast and would be harder on my skin and the implant placed during reconstructing. They’re going to rad the lower lymph too.
I have access to proton in my area. I’m 69 and want to keep my heart and lungs safe for many more years of life. Thoughts?

Jump to this post

I had proton radiation finishing in August of 2022 for breast cancer after a bilateral mastectomy due to positive margins. I was told by Mayo Clinic that the proton radiation is less damaging to the healthy tissue and lower risk of complications with expanders in place. I had 30 treatments, the last 5 were a boost. Mepitel film saved my skin. The nurse puts it on before radiation and it can stay on through the entire course of treatment. With my sensitive skin I only had some wet peeling where it didn't stick well under my armpit due to the hot weather. Just my opinion but I would push for the proton radiation.

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