Fear of radiation after lumpectomy

Posted by diane12 @diane12, Apr 19, 2018

I was seriously thinking of refusing radiation after lumpectomy because I had complete removal of tumor with wide negative margins. I was convinced that there would be no lung, rib, or heart radiation by using the prone(lying on stomach) with breast hanging down. They have been very careful with treatments & very accommodating so after 4 treatments I am feeling more secure by my decision to do this to ensure all cancer was caught.

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Profile picture for peggrady @peggrady

I had a lumpectomy two weeks ago and will follow up with radiation. I had triple negative BC, the most aggressive type but luckily both lymph nodes were negative and the tumor small, 12 mm. . I feel confident in my decision to not do chemo as the cons were way higher than the pros. What I would like to learn is what lifestyle changes I can make to increase my chances of living a long healthy life. I'm already 75 so can't complain but would like to keep on keeping on. Thanks for any input.

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@peggrady
I had the same diagnosis at about the same age. I wanted to go after it with everything I could. I did double mastectomy, chemo before and after, no reconstruction so that I could heal quickly and feel any changes more easily.
I had the ATM gene and wonder if you had any genetic testing. There are cautions about radiation with the ATM gene.
I take a statin as MD Anderson has research that suggests it can help with reoccurrence. I eat an orange and blueberries each morning, limit red meat, do as much organic as possible, exercise 30 minutes a day, only an occasional glass of wine, keep my weight under control. Hope we can both keep on keeping on. My best to you.

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I had colon cancer in 2016, L. breast lumpectomy 2020, R. breast lumpectomy 2024. Radiation only with lumpectomies. But around 30-40 years of
mammograms every two years. Recently had a genetic test ( blood test) and learned the TP53 gene is a pathogenic variant. It is hereditary with a higher chance of developing certain cancers. Both siblings and my daughter need to be tested. 50% chance of having it. If so then their kids should also be tested, If they don’t have the variant then they and kids just have same
risk as anyone. The info suggested avoiding radiation so now I worry about
continuing with mammos. Maybe too late to worry as I had them so many years. But I can ask my dr. for. breast MRI.

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Profile picture for drummergirl @drummergirl

@peggrady
I had the same diagnosis at about the same age. I wanted to go after it with everything I could. I did double mastectomy, chemo before and after, no reconstruction so that I could heal quickly and feel any changes more easily.
I had the ATM gene and wonder if you had any genetic testing. There are cautions about radiation with the ATM gene.
I take a statin as MD Anderson has research that suggests it can help with reoccurrence. I eat an orange and blueberries each morning, limit red meat, do as much organic as possible, exercise 30 minutes a day, only an occasional glass of wine, keep my weight under control. Hope we can both keep on keeping on. My best to you.

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@drummergirl thanks for all the information. I'll ask my doctor about the statin and will follow your lead with the orange and blueberries and all the other healthy things. Let's keep on keeping on until we are really old old ladies and ready to rest. My best to you as well. Life is an adventure.

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Profile picture for lynnn @lynnn

I had colon cancer in 2016, L. breast lumpectomy 2020, R. breast lumpectomy 2024. Radiation only with lumpectomies. But around 30-40 years of
mammograms every two years. Recently had a genetic test ( blood test) and learned the TP53 gene is a pathogenic variant. It is hereditary with a higher chance of developing certain cancers. Both siblings and my daughter need to be tested. 50% chance of having it. If so then their kids should also be tested, If they don’t have the variant then they and kids just have same
risk as anyone. The info suggested avoiding radiation so now I worry about
continuing with mammos. Maybe too late to worry as I had them so many years. But I can ask my dr. for. breast MRI.

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@lynnn It's all so confusing but from what I understand the radiation in mammos is targeted so much better now than in previous years. Your doc will know your risks. I had a breast MRI and was really hesitant as I'm claustrophobic but it wasn't bad as it's done on your stomach so I didn't feel quite so confined. So much to learn and think about. Thanks for sharing your story and I'm hoping your siblings and daughter don't have the problem with the TP53 gene. Hugs to you.

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Profile picture for peggrady @peggrady

@drummergirl thanks for all the information. I'll ask my doctor about the statin and will follow your lead with the orange and blueberries and all the other healthy things. Let's keep on keeping on until we are really old old ladies and ready to rest. My best to you as well. Life is an adventure.

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@peggrady
Thumbs up on that Peg! Love your positive spirit😄

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Profile picture for peggrady @peggrady

@drummergirl thanks for all the information. I'll ask my doctor about the statin and will follow your lead with the orange and blueberries and all the other healthy things. Let's keep on keeping on until we are really old old ladies and ready to rest. My best to you as well. Life is an adventure.

Jump to this post

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Profile picture for peggrady @peggrady

@lynnn It's all so confusing but from what I understand the radiation in mammos is targeted so much better now than in previous years. Your doc will know your risks. I had a breast MRI and was really hesitant as I'm claustrophobic but it wasn't bad as it's done on your stomach so I didn't feel quite so confined. So much to learn and think about. Thanks for sharing your story and I'm hoping your siblings and daughter don't have the problem with the TP53 gene. Hugs to you.

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@peggrady thank you. I had mammos for so many years likely before they were targeted as in recent years.
I am in Ottawa and eligible for so many tests due to this so I guess that will help for spotting anything worrisome. Fortunately I don’t have to pay for any med care here. I’d be in the poor house.

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Profile picture for beachbabe @beachbabe

I am trying to decide whether to have radiation or skip it for my stage 1 HER+ BC. I was offered accelerated partial breast radiation which wouldn't be every other day for 5 days. If I don't do radiation and just take Anastrazole for 5 years my risk of recurrence over 10 years is 5.3%. With radiation and Anastrazole it is 1.6%. I'm 71 and had a lumpectomy 1.5cm tumor negative lymph node. Did you have any side effects? Fatigue or burns? Change in size or shape of the breast? I'm very worried about side effects and not sure if the benefits outweigh the risks given my low risk of recurrence. But also worried about not doing everything to reduce my risk.

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@beachbabe
Did you take a Her2 targeted therapy like Herceptin?

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Profile picture for drummergirl @drummergirl

@peggrady
I had the same diagnosis at about the same age. I wanted to go after it with everything I could. I did double mastectomy, chemo before and after, no reconstruction so that I could heal quickly and feel any changes more easily.
I had the ATM gene and wonder if you had any genetic testing. There are cautions about radiation with the ATM gene.
I take a statin as MD Anderson has research that suggests it can help with reoccurrence. I eat an orange and blueberries each morning, limit red meat, do as much organic as possible, exercise 30 minutes a day, only an occasional glass of wine, keep my weight under control. Hope we can both keep on keeping on. My best to you.

Jump to this post

@drummergirl
I thought my side effects were caused by the Tamoxifen and they lasted way too long after I stopped taking the pill. Then I finally had two weeks where I felt my old self again. Now, this third week, the side effects have returned for a part of all of the last four days. Is it known what side effects radiation has in the long run? I wonder if there are too many variations to deal with isolating what is caused by radiation and what is not.

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Profile picture for luckbme @luckbme

@drummergirl
I thought my side effects were caused by the Tamoxifen and they lasted way too long after I stopped taking the pill. Then I finally had two weeks where I felt my old self again. Now, this third week, the side effects have returned for a part of all of the last four days. Is it known what side effects radiation has in the long run? I wonder if there are too many variations to deal with isolating what is caused by radiation and what is not.

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@luckbme
Sorry, I did not have radiation. The tumor I had was located above my heart and I had the ATM gene. Because of these things, I wanted to avoid radiation. I was told with a double mastectomy, I would not have to have radiation.
Radiation certainly has side effects, but I can’t speak to any personal experience.
Hope you start to feel better soon.

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