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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Hi @frogjumper
Just to add to the feedback, I underwent 3 weeks of daily radiation after my relatively small, grade 2, ER, PR+ tumor after lumpectomy, nothing in nodes or margins, was on left side and I did the hold your breath routine to keep rad away from heart. I very much hoped to avoid radiation (I even avoided dental x-rays most of my life, almost a phobia), and managed to avoid rad when diagnosed with a different cancer 11 yrs ago (Hodgkin's lymphoma, only chemo) but this time my radiologist was very convincing (said with rad, 95% protection from recurrence). But last summer I had a bc (same type) recurrence 2.5 yrs later anyhow, in scar tissue. After the rad I had opted not to take the AI which perhaps would have protected me, will never know. Dr said without rad, maybe the recurrence would have happened more quickly.
The rad had so little visible effect on me I wondered if the machine was actually working correctly (no noticeable effect on skin, only very slight shortlived fatigue after).
All the dire effects reported about the AI scared me off, but now have been taking it for past 6 months (alternate days, my decision), and no effects; maybe at 71 yrs, the estrogen has already faded away, don't know but in my case at least, I detect no effects from it or the rad.

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@boathouse

Hello
Everyone’s treatment plan is different for their type of breast cancer.
I had a double mastectomy, 25 rounds of radiation, and preventive chemo.
I just completed my reconstruction - fat graph for small b cup.

I am cancer free - a long journey.

My advice is to do what is medically right and not convenient.

I had stage 3 HER 2 positive and wanted to limit my percent chance for reoccurrence - I am recovering as I write this from reconstruction and I am excited to have courageously made it positively through all treatments over the past year!

I will be monitored for the next 5 years.
I am ready to only look forward and continue living without regrets on my decision with my care team.

Focus on your long term health and you are worth driving 2 hours each way!!

Follow what treatment is right for you-we are more courageous than we think

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How is it going? So glad you are at the end of all treatment.

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@cashemire

Hi @frogjumper
Just to add to the feedback, I underwent 3 weeks of daily radiation after my relatively small, grade 2, ER, PR+ tumor after lumpectomy, nothing in nodes or margins, was on left side and I did the hold your breath routine to keep rad away from heart. I very much hoped to avoid radiation (I even avoided dental x-rays most of my life, almost a phobia), and managed to avoid rad when diagnosed with a different cancer 11 yrs ago (Hodgkin's lymphoma, only chemo) but this time my radiologist was very convincing (said with rad, 95% protection from recurrence). But last summer I had a bc (same type) recurrence 2.5 yrs later anyhow, in scar tissue. After the rad I had opted not to take the AI which perhaps would have protected me, will never know. Dr said without rad, maybe the recurrence would have happened more quickly.
The rad had so little visible effect on me I wondered if the machine was actually working correctly (no noticeable effect on skin, only very slight shortlived fatigue after).
All the dire effects reported about the AI scared me off, but now have been taking it for past 6 months (alternate days, my decision), and no effects; maybe at 71 yrs, the estrogen has already faded away, don't know but in my case at least, I detect no effects from it or the rad.

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Thank you for sharing this. Always lots of negative posts but I think more post about the benefits outweighing the side effects is great.
I am not really a Pollyanna but I try.😘

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@auntieoakley

Thank you for sharing this. Always lots of negative posts but I think more post about the benefits outweighing the side effects is great.
I am not really a Pollyanna but I try.😘

Jump to this post

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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@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

Jump to this post

I celebrate with you.
I just started my AC treatment for TNBC , stage 2 and have been very weak and nauseous. But yes, I am pressing forward and hoping at the end it will be ok.

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To be certain that you are not 1 of the 2 people per 100, pursue proton bean radiation. I had 16 treatments and felt much more confidant that I could beat those odds. I am 83 and 2+ years out from surgery and treatment. Good luck.

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@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

Jump to this post

Watching you virtually, as you have tackled this has been an inspiration.
I am so glad to know you went kayaking on the 4th. Helping us all remember why we do this, …………..to have more time the people and things we love.
Are you done with treatment now or are you on endocrine therapy?

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I had 35 rads 16 yrs ago for grade 1 DCIS in my right breast. I had significant burned tissue towards the end and had to discontinue Tamoxifen after 2 yrs due to cognitive issues with word retrieval and memory. I was diagnosed w grade 3 DCIS in my left breast this Feb and just completed 15 rads w daily boost. It was a new breast cancer (not a recurrence). The radiation was very different this time and I had minimal pain/burn even with the daily boosts. They are very careful in mapping the radiation and the radiation is more precise then in the past so less tissue is damaged. Best of luck in your journey.

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@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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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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