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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@frogjumper hi! I came across your post and wondering what was your decision about radiation.... I am in similar situation with awaiting lumpectomy on the left breast and then facing most likely radiation . I have a small breast and I think that is another concern that after lumpectomy there will be not much left and radiation will be so close to heart . Hope you are doing fine and I am sure you made the right decision. 💕

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@enaska1

@frogjumper hi! I came across your post and wondering what was your decision about radiation.... I am in similar situation with awaiting lumpectomy on the left breast and then facing most likely radiation . I have a small breast and I think that is another concern that after lumpectomy there will be not much left and radiation will be so close to heart . Hope you are doing fine and I am sure you made the right decision. 💕

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I do not believe that the size of your breast will change at all. I had radiation on the left side, and did not even get tired from it. However, I did get cancer in the left breast again after about 26 years BUT my oncologist moved without telling me and I was remiss in not finding another one. so no checkups for decades. Also did have heart disease, again not until I was in my 80’s.

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I had 16 proton treatments after surgery, and the beam painted its radiation right over my heart. NOT ONE SINGLE PROBLEM!!! Go for proton. Good luck.

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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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Can you explain fat grafting reconstruction? So no implants and not Diep?

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@enaska1

@frogjumper hi! I came across your post and wondering what was your decision about radiation.... I am in similar situation with awaiting lumpectomy on the left breast and then facing most likely radiation . I have a small breast and I think that is another concern that after lumpectomy there will be not much left and radiation will be so close to heart . Hope you are doing fine and I am sure you made the right decision. 💕

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I did decide against radiation. And I am comfortable with that decisions. The hormone therapy was a hard no for me had such a fractional benefit that it was not worth the risks. Having found out this summer I have Osteopenia I think I made a good choice on the meds. Had I pursued radiation it, I would have driven the distance and done Proton for 2 weeks. They were really pushing brachytherapy for me and I thought no, it's not been around long enough to weigh in the risks.
But in any event we shall see. I have my first post surgery mammogram/ultrasound this Monday the 30th, 1 day to the year of my biopsy. Fingers crossed it comes out OK!

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@frogjumper

I did decide against radiation. And I am comfortable with that decisions. The hormone therapy was a hard no for me had such a fractional benefit that it was not worth the risks. Having found out this summer I have Osteopenia I think I made a good choice on the meds. Had I pursued radiation it, I would have driven the distance and done Proton for 2 weeks. They were really pushing brachytherapy for me and I thought no, it's not been around long enough to weigh in the risks.
But in any event we shall see. I have my first post surgery mammogram/ultrasound this Monday the 30th, 1 day to the year of my biopsy. Fingers crossed it comes out OK!

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Fingers crossed indeed ! Wishing you TONS of health!!! I was thinking about proton therapy as well if needed. I am not sure if they really are doing it for breast cancer.... I know neurology definitely is using . Besides lumpectomy , I am not sure what my decision will be . Listening to many people/ doctors , reading also a lot it's not always clearing my mind ... I am more confused at times . Good luck !!!💕

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I was diagnosed with DCIS and had a lumpectomy 12 years ago followed by radiation. My tumor was practically on top of the chest wall and very close to my heart, so they had me in a special room at MD Anderson where you wear goggles during the radiation and they ask you to take a deep breath at different intervals and hold it until you can see the yellow line in your vision move to the top and turn green. That tells them to do something that actually moves your heart out of the way while they radiate. Amazing! They told me with radiation, if the cancer ever came back, I would not be able to have radiation. I couldn't imagine the cancer recurring, so I went ahead and had the radiation. It wasn't a bad experience at all. I was a little more tired than normal but no pain or discomfort at all. Having to get up extra early for my 7 am appointment every day for 6 weeks contributed more to my tiredness than the radiation itself.
The radiation effect lasted for 12 years and this year I was diagnosed with IDC in the same area of the left breast and was told my only option was a full mastectomy, which I had a month ago. The path report showed clean margins all around and no cancer in the lymph nodes they removed. I find out tomorrow the results of my oncotype testing which will help the doctor make a decision on whether or not I will need chemotherapy in addition to taking an aromatase inhibitor.

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@ppat4pr

I do not believe that the size of your breast will change at all. I had radiation on the left side, and did not even get tired from it. However, I did get cancer in the left breast again after about 26 years BUT my oncologist moved without telling me and I was remiss in not finding another one. so no checkups for decades. Also did have heart disease, again not until I was in my 80’s.

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Hi ppat4pr,
Do you mind if I ask about your heart disease? Is it like coronary calcifications which come with age - or something else?
I was recently diagnosed with stage 1 IDC and want to opt out of radiation because I used to be a heavy smoker ... I'm 63 and don't want to put my heart and lungs through any more stress. I am thinking about passing on the AI as well, since already I miss the HRT which I took for difficult menopause.
Meeting with surgeon in a couple of weeks, so I am going to listen carefully to her recommendations as well. Was told that lumpectomy and oncology will likely be recommended as per protocol.

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@enaska1

Fingers crossed indeed ! Wishing you TONS of health!!! I was thinking about proton therapy as well if needed. I am not sure if they really are doing it for breast cancer.... I know neurology definitely is using . Besides lumpectomy , I am not sure what my decision will be . Listening to many people/ doctors , reading also a lot it's not always clearing my mind ... I am more confused at times . Good luck !!!💕

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Yes it is being done for breast cancer!!! Cuts your recurrence risk down, so much easier than AI. My proton radiation oncologist in San Diego is awesome. Much lower risk of side effects and I am using Mepitel Film to reduce risk further. Make an appointment, find out the facts and then make your decision. Best of luck to you.

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@elliejk

Can you explain fat grafting reconstruction? So no implants and not Diep?

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Following

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