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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@anjalima thank you so much for your input and I hope you are doing well in your journey! I think that sounds like a good idea trying out an AI just to see if I have any reactions. I also tend to have strong reactions to meds (and allergic reactions). I am 61 and am post-menopausal. I was originally taking HRT meds before being diagnosed with breast cancer (due to extreme hot flashes and feeling sick from menopause symptoms). I am leaning toward trying an AI (my surgeon mentioned letrozole) and foregoing the radiation, unless I can find some more definite data showing risk/benefit. I also need to evaluate based on my Oncotype results, which I have not yet received.

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@dogmom23

I am dealing with a similar situation. I just had lumpectomy for Grade I invasive ductal carcinoma, ER/PR positive and HER-2 negative. Spot removed was only 0 .6 cm (smaller than pea size). Surgeon rec is radiation plus AI. I have suffered for my nearly my entire life with chronic fatigue, fibromyalgia, autoimmune thyroid, depression, irritable bowel syndrome, anxiety, vertigo, dizziness, swelling, severe allergies, etc. Three lymph nodes were removed and none of them tested positive. My BARC genetic test came back negative also. Surgery report says all margins are clean. I have struggled my entire life to overcome the overwhelming amount of symptoms I already have. In addition, my father died of leukemia and also my cousin on his side. My cousin on my mom's side has lupus and thyroid issues as does the entire side of mom's family. My aunt had lung cancer. With my history, I do not want to risk making my already awful quality of life even worse. So I am waiting on my Oncotype results. I too have read horrible things about AI and radiation. Radiation can bring on leukemia and lung cancer later on. I've had to cut back on work already due to my existing issues, so I can't afford to quit. I need to still work to pay bills. So far, I have not found that the benefits of radiation or AI's outweigh the risks or decreased quality of life. Unless there is some indication that you are at higher risk of recurrence. I'd like to see some studies on this topic but haven't found much out there yet. Has anyone out there found any studies on this?

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Wow, I can’t believe how similar our stories seem. I, too was recently diagnosed w/IDC stage 1. I had surgery at Mayo and am awaiting the OncoType test. My preliminary meeting with the oncologist seemed very prescribed protocols, including radiation and hormone inhibitors. I am 73, small frame and concerned with Osteoporosis. My father, his brother, and a first cousin died of leukemia as well.
Please let me know how you fare gaining any info or insight to your current status on future treatments.
Your friend, Elliej

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@dogmom23

@anjalima thank you so much for your input and I hope you are doing well in your journey! I think that sounds like a good idea trying out an AI just to see if I have any reactions. I also tend to have strong reactions to meds (and allergic reactions). I am 61 and am post-menopausal. I was originally taking HRT meds before being diagnosed with breast cancer (due to extreme hot flashes and feeling sick from menopause symptoms). I am leaning toward trying an AI (my surgeon mentioned letrozole) and foregoing the radiation, unless I can find some more definite data showing risk/benefit. I also need to evaluate based on my Oncotype results, which I have not yet received.

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Hi, I too am awaiting OncoType test to determine treatment options. I am concerned with the standard prescribed radiation/inhibitor for 5year plan protocols.
I took HRT for over 30years, so am currently experiencing the dreaded menopause symptoms. At 73years of age, will I benefit from years of AI or will it reduce considerably my quality of life. I have a family history of Osterporosis and Leukemia.
Let me know how your journey proceeds, I’ll be watching and hoping all goes well for you!

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My story is I just had lumpectomy last week, 3 mm size. Estrogen positive, progesterone negative and HER negative. Tumor was actually removed when I had biopsy but surgeon still removed a golf ball size bit plus lymph tissue. Sentinel node was negative, hallelujah! Because of small size, may not get oncotype test. But will do genetic testing on about 30 genes. If any are bad, will do double mastectomy. Otherwise radiation and estrogen blocker for 5-10 years, the latter more concerning to me regarding bone health. So one day at a time.

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Good Morning Gentle Warriors.

It’s amazing to learn of all the similarities and differences we each come to this journey with, and the incredible learning curve required to make such important and complicated decisions. I am honored to be part of this group where we can ask and offer and learn from each other. 🌸

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I’m thinking against radiation for my situation & am wondering if anyone else has/had a similar situation. I was diagnosed with DCIS grade 2, ER/PR+. The area of DCIS was small, .2cm dimension. I has a Stereotactic biopsy that apparently removed all of the DCIS. I had a lumpectomy to be sure nothing remained. The pathology report came back with zero cancer present, confirming it was all already removed. I’m still being recommended for radiation since this is “standard” care. After extensive research on radiating the breast & seeing the problems that can continue to present years later I’m thinking about passing on radiation. My thought is that since you can only radiate each breast 1x & if I did have a reoccurrence in the same breast of DCIS or an IBC then my only choice left would be a mastectomy if I follow through now. I will try the hormone suppression since my type was positive for both. I’m currently waiting on results for the Oconotype DX DCIS genomic test to see what my chance of reoccurrence is & I’ll finalize my decision depending on the results.. I will be monitored every 6 months by a mammogram followed by a breast MRI 6 months later so anything that shows up would be caught early, within 6 months. If so, then another lumpectomy might be possible instead of a mastectomy. I’d like to keep future options open since I now have a higher statistical chance for another breast cancer since having DCIS.

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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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Hi,
I also declined the radiation and aromatase inhibitors because I did not want the intense side effects to ruin my quality of life. My family was upset at first, but they know it was my choice. I did not want to do nothing, so I found a really good Naturopath and I am doing many natural treatments. One of them is taking the Artemisinin pills - one per day - which you can order on Amazon for $27.00 a bottle. There is Artemisinin that can be administered by intravenous, but it is not allowed in the province where I live. I am also doing Mistletoe injections which I give to myself - 2 to 3 time per week. I know these are allowed in the US if that is where you live. I am taking many other Homeopathic supplements as well as trying to follow a vegan/ vegetarian diet (about 75 to 80% of the time lol!!). I did have a partial mastectomy last February. When I told the surgeon in June that I had decided not to do the radiation and hormone therapies, she said I would likely not have a recurrence anyway. I am 72 years old,
and I want to have the best quality of life for the time I have left. This is a very personal decision, so each person must do what they really believe will work for them. I read a few books on preventing cancer the natural way. One was "Chris Beat Cancer' and another was "Keep Your Breasts". Somewhere I read that a big part in having a treatment work was believing in it. So, if you believe in the mastectomy/radiation/chemotherapy/hormone treatments, then that is what you should do. If you believe in the natural treatments, then that is what you should do. It is your body and your life that has to be lived, so you need to follow your heart. Good luck in whatever choice you make.

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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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Also, I forgot to mention that my mom died of breast cancer. She had a lumpectomy, radiation therapy, and Tamoxifen for 6.5 years and still got a recurrence. The radiation and Tamoxifen gave her many bad side effects and her quality of life sucked! That also influenced my decision to forgo the radiation and aromatase inhibitors and go for the natural treatments.

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I had a lumpectomy, chemo and radiation, ending a year ago. The radiation was easy. I don't want to take hormone therapy. I'm 81 years old and tromping around fine. I got neuropathy from the chemo and found help with my balance and pain with a patch from VoxxLife. When my port was removed I think it took longer to heal than what was normal for me and I believe it was from the radiation on my breast.

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I had triple negative invasive carcinoma I suffered from several orthopedic injury injuries and I’m in a wheelchair I also had gastrointestinal issues and I couldn’t get an aid during Covid which I would’ve needed in order to get through the chemotherapy because I live alone. My oncologist pushed the chemo and I tried very hard to get any when I couldn’t I realize that maybe God was telling me I really shouldn’t have it probably would’ve killed me I went to radiation over radiated and have horrible side effects from the radiation but this is everybody’s personal decisions you have to weigh all the factors. Quality of life was important to me if I was gonna not be here on the planet for a long time that I didn’t wanna spend it suffering I also am very religious very spiritual and I’m a counselor by trade social worker so I decided to use visualization and work on myself and with the help of God I’m in remission which is really a miracle it’s triple negative it’s hard to cure without all these strong treatments oncologist recommend but I went by my own instincts and intuition and I think that’s what you have to follow you have to weigh the doctors advice how you feel personally about your quality of life and where you are spiritually. You can buy an old saying all those things and you’ll come to the right decision sometimes the standard therapy is a one size fits all which doesn’t fit everybody so everybody has to make their own personal decision. It’s tough but at the end you have control and the best part of fighting cancer is that you don’t let it control you with fear. So all those Warriors out there I salute you for your courage those who went through chemo those who went to radiation and those who decided not to because that also takes courage. God bless you all

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