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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@anjalima

Great news!!!! I was similarly lucky with a favorable ONCOTYPE analysis. On Anastrozole for 18 mos. So far so good … with a two mos. Heavy side effect blip when pharmacy changed manufacturer… back to original manufacturer and all good.

Be aware of manufacturer and check each time you fill your script. I appear to have been sensitive to that change.

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Thanks for letting me know about the pharmacy blip. My husband had a similar experience when his chemo pill changed manufacturer. He’s now on the brand-name and doing much better with side effects.

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@cobb

I don’t know. Have you asked your doc at Proton? If they say yes, I can bring some to Proton for you. I only have partial breast radiation and the film size is 4 x 4.8 inches and one dressing covers my area so I will have leftover film. Let me know area size so I know how many to bring. My name is Lynn and I will have my last treatment next Friday. PS- my skin is old and fair too!!

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That’s a very kind offer Cobb/Lynn. That is so great the Mepitel worked so well for you. I have emailed my doctor about Mepitel, or something stronger I can use. I will let you know if Mepitel is recommended for me. (It’s the chest wall plus axilla, so a large area.) I only have 4 of 28 treatments left so I should also be done this next week if I continue. So anxious about making the rash and burn pain even worse with the remaining treatments.

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I had a small 1A IDC no nodes positive. They said bc of my “young age” 52 radiation was recommended. If I was 65 or older no radiation. It cuts the recurrence of the cancer by 2/3 so I did it. It was unpleasant but fine. 15 days.

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@meomurian

Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to take anastrozole for 5 years. I'm willing to do that if it will help keep the cancer from coming back again.

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Great news!!!! I was similarly lucky with a favorable ONCOTYPE analysis. On Anastrozole for 18 mos. So far so good … with a two mos. Heavy side effect blip when pharmacy changed manufacturer… back to original manufacturer and all good.

Be aware of manufacturer and check each time you fill your script. I appear to have been sensitive to that change.

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Ask for doctor is "Is there is significant difference?" This is not a casual reference. This is a statistical measurement based on the actual cases that that researchers have studied. I would also decide based on how risky or onerous the treatment is. My radiation was not that bad. Plus, my radiation oncologist made an interesting remark regarding re-occurrence that I had to run by my medical oncologist. The radiation oncologist tells you about the re-occurence of that particular tumor; the medicine oncologist tells you about re-occurence of breast cancer in general. Good luck.

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@meomurian

Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to take anastrozole for 5 years. I'm willing to do that if it will help keep the cancer from coming back again.

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@meomurian I AM SO HAPPY FOR YOU ! ❤️❤️❤️

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@baylaurel

Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer but have radiation dermatitis bad enough to need a short break from radiation. Is is too late for me to use Mepitel film? Only using steroid cream plus Calendula and Aquaphor but it is not helping my very fair and old skin.

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Another thought is to join the Mepitel FB group and ask the question!

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@enaska1

THANK you for taking time and providing this info . I wish cancer would NOT come back! My thoughts and prayers to you ! Hope you don't need chemo ! 💕🙏🏻

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Thanks! I don't need chemo!!! I am so happy! I found out yesterday. Just have to take anastrozole for 5 years. I'm willing to do that if it will help keep the cancer from coming back again.

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@baylaurel

Hi Cobb, I am also getting proton therapy in San Diego for left side breast cancer but have radiation dermatitis bad enough to need a short break from radiation. Is is too late for me to use Mepitel film? Only using steroid cream plus Calendula and Aquaphor but it is not helping my very fair and old skin.

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I don’t know. Have you asked your doc at Proton? If they say yes, I can bring some to Proton for you. I only have partial breast radiation and the film size is 4 x 4.8 inches and one dressing covers my area so I will have leftover film. Let me know area size so I know how many to bring. My name is Lynn and I will have my last treatment next Friday. PS- my skin is old and fair too!!

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@meomurian

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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THANK you for taking time and providing this info . I wish cancer would NOT come back! My thoughts and prayers to you ! Hope you don't need chemo ! 💕🙏🏻

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