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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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@mimi09 | @mimi09 | Oct 12 4:45am
In reply to @rpierro "I am 20 plus years survivor of breast cancer, DCIS. I had a lumpectomy and radiation..." + (show)
Profile picture for rpierro @rpierro

I am 20 plus years survivor of breast cancer, DCIS. I had a lumpectomy and radiation and chose not to do the tamoxifen. Your decision depends on you and your family, along with your oncologist input and type of cancer you had. When I had cancer i had to come to terms with the fact that it was my decision and not someone else's on how it is treated. The other disappointment I had and still do to some extent is the lack of connection with the naturopaths and medical teams and dietitians when it comes to these decisions. I made the right decisions for the times but if it were today, I might think twice about radiation for what I had, and would include a vegetarian or vegan diet and use only natural personal care products as my road to good health. The only side effect I had (that I know of) with radiation therapy was a terrible skin rash on my breast that the radiologist said was not caused by radiation, but I got another opinion from a dermatologist and she said it definitely was. It was treated with cortisone and did not return. I did use supplements during radiation and went about my daily life and work. Again, this is such a personal decision that may not be best for you.

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@rpierro
My story is very similar to yours. My DCIS was 24 years ago with lumpectomy w/o clear margins, 2nd lumpectomy then 30 fractions of radiation. On advice I insisted on ointment to use ‘just in case of skin reaction.’ Worked beautifully: never burned skin. Mammos clear until a year ago.
Now same breast with inverted nipple and ILC. Repeating testing done last year to make my decision. At 79, I feel great with a positive attitude. Our bodies, our decisions after research, advice, discussion!

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haydia123 | @haydia123 | Oct 5 8:02pm

Thank you for the post about using the (Pron). I will pursue with my medical staff. I just received a diagnosis of Malignant Neoplasm of lower-outer quadrant of right breast of female, estrogen receptor positive (HCC) I'm not aware of the next step however I'm 76 in December and my mom had the lumpectomy with radiation after while in her mid 80's. She lived to be 96 without cancer as cause of death.

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lynnn | @lynnn | Oct 4 9:48am
In reply to @peggrady "@lynnn It's all so confusing but from what I understand the radiation in mammos is targeted..." + (show)
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 for your kind thoughts. Having mammos for so many years probably exposed me to too
much radiation, so this pathogenic gene didn’t help. Even with less radiation with mammos now, I am hesitant to absorb any more. I’ll ask my oncologist for
her advice. I got these cancers in my 80’s, which is unusual from this syndrome. I am otherwise healthy but I will die from something. But would like to avoid a cancer death.

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drummergirl | @drummergirl | Oct 3 8:46pm
In reply to @luckbme "@drummergirl I thought my side effects were caused by the Tamoxifen and they lasted way too..." + (show)
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@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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luckbme | @luckbme | Oct 3 6:39pm
In reply to @drummergirl "@peggrady I had the same diagnosis at about the same age. I wanted to go after..." + (show)
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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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@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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crspedsrn | @crspedsrn | Oct 2 11:00pm
In reply to @beachbabe "I am trying to decide whether to have radiation or skip it for my stage 1..." + (show)
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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lynnn | @lynnn | Sep 29 2:34pm
In reply to @peggrady "@lynnn It's all so confusing but from what I understand the radiation in mammos is targeted..." + (show)
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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drummergirl | @drummergirl | Sep 29 1:25pm
In reply to @peggrady "@drummergirl thanks for all the information. I'll ask my doctor about the statin and will follow..." + (show)
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
https://www.mdanderson.org/newsroom/statins-may-improve-survival-for-triple-negative-breast-cancer-patients.h00-159462423.html

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drummergirl | @drummergirl | Sep 29 1:18pm
In reply to @peggrady "@drummergirl thanks for all the information. I'll ask my doctor about the statin and will follow..." + (show)
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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peggrady | @peggrady | Sep 29 12:22pm
In reply to @lynnn "I had colon cancer in 2016, L. breast lumpectomy 2020, R. breast lumpectomy 2024. Radiation only..." + (show)
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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