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 shortie0650 @shortie0650

Thank you for the information. My mom died of breast cancer. She had a lumpectomy followed by a long course of radiation and 6 1/2 years of Tamoxifen. The side effects from these two treatments destroyed her quality of life and she got a recurrence despite following the full regime of treatments her Dr.'s prescribed. I know that if I refuse the treatments, my family will be super upset, but I don't think I'm willing to have my quality of life destroyed as my mom's was for the time I have left! 🙁 I have not yet seen the radiation oncologist or a regular oncologist - only the surgeon, so we'll see what's up after I meet with them. Has anyone out there ever tried the supplement Artemisinin (Sweet Wormwood)?? It is supposed to "dramatically kill breast cancer and leukemia cells while leaving normal breast cells and white blood cells unscathed. It has very few and mild side effects, but I can't find any testimonies of anyone who has actually taken it.

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I am sorry to hear that your mom went through that and it came back anyway. I am sure you miss her. It is very hard to see someone we love hurting and declining. We all have to make the best decision we can based the information we have at the time. I am sure your mom tried to do this as well. I started my journey 17 years ago and I can tell you that the available information has grown exponentially since then. Sadly, science still cannot always predict who will have it return and when or who will die. There are statistical probabilities but no guarantees. I can say that radiation did not really affect my quality of life that drastically. It did give some some very severe fatigue, but compared to the chemo I took first, it really was a walk in the park. Tamoxifen kind of had some constant gifts of hot flashes and a general aging that I had not expected, but nothing too awful. I know in online conversations, we usually hear from all the people who had awful reactions but that really isn’t the norm. Please consider everything and make the best decision you can for yourself. Only you can know what is best for you.

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Profile picture for shortie0650 @shortie0650

Thank you for the information. My mom died of breast cancer. She had a lumpectomy followed by a long course of radiation and 6 1/2 years of Tamoxifen. The side effects from these two treatments destroyed her quality of life and she got a recurrence despite following the full regime of treatments her Dr.'s prescribed. I know that if I refuse the treatments, my family will be super upset, but I don't think I'm willing to have my quality of life destroyed as my mom's was for the time I have left! 🙁 I have not yet seen the radiation oncologist or a regular oncologist - only the surgeon, so we'll see what's up after I meet with them. Has anyone out there ever tried the supplement Artemisinin (Sweet Wormwood)?? It is supposed to "dramatically kill breast cancer and leukemia cells while leaving normal breast cells and white blood cells unscathed. It has very few and mild side effects, but I can't find any testimonies of anyone who has actually taken it.

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Just a note about artemisinin. Here’s further information
- Can Artemisinin Treat Cancer? https://www.healthline.com/health/artemisinin-cancer
Bottom line
“ Artemisinin is as an effective malaria treatment and has been studied as a cancer treatment. Early studies show promising results, but research is limited. Also, no large clinical trials have been completed.

If you have cancer, you should still pursue traditional cancer treatments. Talk with your doctor about experimental treatments, such as artemisinin, to get more information specific to your case.”

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Profile picture for ellerbracke @ellerbracke

@shorty0650: I was in a similar situation 11 months ago. Same breast, same type cancer, 12 mm, so a little smaller than yours. Based on the ONCO type score, my oncologist and my radiologist agreed that radiation would not significantly change the outcome, so I decided against it. Also, I was told that the decision regarding radiation is not urgent, you have several months to think about it and change your mind, with no consequences (so I’ve been advised). Regarding ER blockers, I, too, read the horror stories and bad reactions that some patients have had. I did experience some fairly noticeable joint pain in my hips for the first 6 to 8 weeks, but then it subsided. So far no recurrence, either of cancer, nor joint pain. And - I was diagnosed 1 month before turning 72, so a very similar case.

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Thank you for sharing. It helps to hear about how others have fared with the different treatments.

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In reply to @shortie0650 "Thanks!" + (show)
Profile picture for shortie0650 @shortie0650

Thank you for the information. My mom died of breast cancer. She had a lumpectomy followed by a long course of radiation and 6 1/2 years of Tamoxifen. The side effects from these two treatments destroyed her quality of life and she got a recurrence despite following the full regime of treatments her Dr.'s prescribed. I know that if I refuse the treatments, my family will be super upset, but I don't think I'm willing to have my quality of life destroyed as my mom's was for the time I have left! 🙁 I have not yet seen the radiation oncologist or a regular oncologist - only the surgeon, so we'll see what's up after I meet with them. Has anyone out there ever tried the supplement Artemisinin (Sweet Wormwood)?? It is supposed to "dramatically kill breast cancer and leukemia cells while leaving normal breast cells and white blood cells unscathed. It has very few and mild side effects, but I can't find any testimonies of anyone who has actually taken it.

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And how are you today?
Hopefully, 👌

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I didn't do radiation after a lumpectomy because I had an OncotypeDX 'risk of recurrence within 9 years' of 3% based on taking aromatase inhibitors. Which is considered 5% if one doesn't take the meds. The OncotypeDX genetic test assumes one has not had either chemo or radiation and in fact does not accept tumor tissue the patient has had either. I was amenable to the radiation before receiving the test result but decided it didn't offer enough risk reduction to merit the risks of the radiation. In my case, the lump was in the left breast, thus closer to the heart and that played a part in the decision as well. But I have friends who've breezed through this targeted radiation and glad for it.

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Profile picture for raebaby @raebaby

I decided not to take tamoxifen after lumpectomy ,chemo and radiation. I only ended radiation a couple of months ago. I'm 80. I had an awful time during menopause and I didn't want to go back to the emotional feelings I had without estrogen. I'm doing well now and was able to go out and mow the fields around my property this weekend.

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Thanks!

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Profile picture for Laurie, Volunteer Mentor @roch

@shortie0650
Do not disregard any treatment based on others side effects or results. Everyone is an individual.

It is like watching commercials for drugs and they start listing all possible side effects, and it makes you wonder why anyone would take.

BUT knowing pros and cons of different treatments can help you have an informative conversation with provider.

I remember asking my radiations oncologist about protein beam radiation for my breast cancer and he told me that other radiation form was more effective for my type of cancer.

So write down list of questions about various treatments and reoccurrence results, side effects, etc...

And if you start a treatment and have side effects, can always stop or try something different.

P,S, I had ER+ HR- breast cancer at 63, lumpectomy on left breast and two positive lymph nodes. I had chemo, radiation of left breast, breast bone, collar bone and armpit, tried multi AIs and then stopped due to side effects.

Laurie

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Thanks Laurie.

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Profile picture for icya2282 @icya2282

Did anyone else in this discussion besides @rpierro decline Tamoxifen treatment after having a lumpectomy and radiation treatments?

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I decided not to take tamoxifen after lumpectomy ,chemo and radiation. I only ended radiation a couple of months ago. I'm 80. I had an awful time during menopause and I didn't want to go back to the emotional feelings I had without estrogen. I'm doing well now and was able to go out and mow the fields around my property this weekend.

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@shorty0650: I was in a similar situation 11 months ago. Same breast, same type cancer, 12 mm, so a little smaller than yours. Based on the ONCO type score, my oncologist and my radiologist agreed that radiation would not significantly change the outcome, so I decided against it. Also, I was told that the decision regarding radiation is not urgent, you have several months to think about it and change your mind, with no consequences (so I’ve been advised). Regarding ER blockers, I, too, read the horror stories and bad reactions that some patients have had. I did experience some fairly noticeable joint pain in my hips for the first 6 to 8 weeks, but then it subsided. So far no recurrence, either of cancer, nor joint pain. And - I was diagnosed 1 month before turning 72, so a very similar case.

REPLY
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