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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@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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@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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@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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@colleenyoung

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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Thank you!

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@auntieoakley

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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Thank you so much! I really appreciate your kind thoughts and It is good to hear that some people don't have the bad side effects.

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@auntieoakley

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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I was wondering if you had any long term side effects from either the radiation or the Tamoxifen? My mom's breast looked almost normal after the lumpectomy, but a long term effect after the radiation is that it started to shrink until it almost was not there and looked like a botched mastectomy and the nipple disappeared (inverted?). It was very painful, even to have the water in the shower touch it. (So we had a hard time getting her to bathe!) She had many other physical and mental side effects including confusion and loss of memory, severe hot flashes, something she called the "squiggleies" which would present like restless leg syndrome but worse in her spine and abdomen, leg cramps, insomnia etc. – just to name a few. I am definitely going to see the radiology oncologist and listen to all options, I'm just really scared!

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@shortie0650

I was wondering if you had any long term side effects from either the radiation or the Tamoxifen? My mom's breast looked almost normal after the lumpectomy, but a long term effect after the radiation is that it started to shrink until it almost was not there and looked like a botched mastectomy and the nipple disappeared (inverted?). It was very painful, even to have the water in the shower touch it. (So we had a hard time getting her to bathe!) She had many other physical and mental side effects including confusion and loss of memory, severe hot flashes, something she called the "squiggleies" which would present like restless leg syndrome but worse in her spine and abdomen, leg cramps, insomnia etc. – just to name a few. I am definitely going to see the radiology oncologist and listen to all options, I'm just really scared!

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I did not have anything severe. When I had radiation, there was some severe fatigue. There was a burning of the breast and the greasy salve was not helpful. I bought a bottle of pure aloe Vera with no alcohol and kept it in the refrigerator. Using that a few times a day made it bearable to continue working. All the deformity in my breasts were from the surgeries.
I took tamoxifen for 5 years, and then anastrazole for even more years. I had the hot flashes and maybe a bit of what your mom called the squiggles. I found that staying hydrated really helped with that, it was mostly noticeable in my ankles at night when I wanted to sleep.
The only long term side effects I have had are related to the chemotherapy that I took.
What about this frightens you the most?.

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@auntieoakley

I did not have anything severe. When I had radiation, there was some severe fatigue. There was a burning of the breast and the greasy salve was not helpful. I bought a bottle of pure aloe Vera with no alcohol and kept it in the refrigerator. Using that a few times a day made it bearable to continue working. All the deformity in my breasts were from the surgeries.
I took tamoxifen for 5 years, and then anastrazole for even more years. I had the hot flashes and maybe a bit of what your mom called the squiggles. I found that staying hydrated really helped with that, it was mostly noticeable in my ankles at night when I wanted to sleep.
The only long term side effects I have had are related to the chemotherapy that I took.
What about this frightens you the most?.

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Well, I really don't want to have any more deformities and that is a personal frailty that I know should not be high on the list. However, I know what it would do to my mental health which is already suffering from clinical depression and a low self esteem. The more important reason is that I am scared to death of having any more "side effects" that will limit what I can do or add to the existing problems that I have and make me hate being alive. I have osteoarthritis and am being tested for psoriatic arthritis; neuropathy in my right foot; a constant battle with insomnia, weight gain and depression; and have low energy. After three years of constant pain in my shoulders where I couldn't sleep from the pain, I couldn't do up my bra or my apron, couldn't wash my hair etc. etc. – I finally got treatment that healed them and am back to being able to move almost normally. The relief of this made a huge difference to my entire mental and physical well being. I have suffered with suicidal thoughts and had one attempt a number of years ago. Having looked at the side effects from both the radiation and the Tamoxifen which might bring back much of that and more, I am scared of myself not being able to cope with it. Right now, about 5 weeks after the partial mastectomy, I have some minor pain that I can tolerate, I have a nasty scar that I don't like but can tolerate, my breast is a bit smaller than the other one but mostly looks normal and I can tolerate that. So I am going about most of my regular life activities without too much trouble, but if I get to the point where I can't do regular daily life without a great deal of pain and lack of energy etc. I am worried I won't be able to stand it.

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Thanks for this information, it gives me some ideas about talking with the radiation oncologist.

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Be sure to ask him about deformities due to location, depth and size of your scar.. I can only tell you that my scar from surgeries is a bit deforming but that is partially due to the scars that I build, any cut or surgery builds weird, angry scars for me. I like to think of them as the visible memories of my life.
I would also encourage you to talk to your doctor frankly about your body image and the depression, if this doctor cannot recommend help, ask them to send you to someone who can. There are ways to reconstruct after breast surgery if there are deformities, and honestly I don’t think any of us gets through the treatments without some depression. Even those who have never had depression can struggle mightily with breast cancer, better living through chemistry (antidepressants) aren’t always a bad thing, you are going through a lot.
Do you have a list of questions ready for your appointment?

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