Opting out of radiation or chemo

Posted by brighterdays @brighterdays, Mar 21, 2023

Has anyone ever had a lumpectomy but opted out of radiation therapy or chemotherapy? Does anyone have statistics on the recurrence rate if one chooses not to do one or both?

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I had DCIS & had a lumpectomy. I chose not to get radiation because my pathology report had no cancer remaining since it was all removed with the stereotactic biopsy. I also took a Oncotype DCIS genetic test that said I have a 9% chance of reoccurrence without treatment & a 6% chance with treatment. Since it was only a difference of 3% & radiation can only be done once I’m saving that option in case of an invasive breast cancer in the same breast. I’m only 6 months out from the lumpectomy so it’s too soon to tell if I made the right choice. I will be diligent in being screened every 6 months with a mammogram followed by an MRI 6 months later. Have you had a genetic test to tell you what the odds for reoccurrence are with & without treatment? You don’t mention the sub category of what type of breast cancer you have but there are several genetic tests for different types. If you haven’t had one it will help you make an informed decision on your treatment. Ask your Oncologist to order one. Insurance covers most of them. Best of luck on your journey!

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@rene1636

I had DCIS & had a lumpectomy. I chose not to get radiation because my pathology report had no cancer remaining since it was all removed with the stereotactic biopsy. I also took a Oncotype DCIS genetic test that said I have a 9% chance of reoccurrence without treatment & a 6% chance with treatment. Since it was only a difference of 3% & radiation can only be done once I’m saving that option in case of an invasive breast cancer in the same breast. I’m only 6 months out from the lumpectomy so it’s too soon to tell if I made the right choice. I will be diligent in being screened every 6 months with a mammogram followed by an MRI 6 months later. Have you had a genetic test to tell you what the odds for reoccurrence are with & without treatment? You don’t mention the sub category of what type of breast cancer you have but there are several genetic tests for different types. If you haven’t had one it will help you make an informed decision on your treatment. Ask your Oncologist to order one. Insurance covers most of them. Best of luck on your journey!

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Thank you. I have IDC and currently waiting for Oncotype results.

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Perhaps it all boils down to risk vs benefit. All of these adjuvant treatments carry risks and you have to weigh those risks against the benefits. I'm in a similar situation and will have surgery and then decide what approach will be best for me. Some of it is what makes you feel comfortable, some people want the most aggressive treatment and others not so much.

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The Tufts Tool https://www.tuftsmedicalcenter.org/ibtr/ helped me decide to undergo radiation therapy after lumpectomy for ER+ IDC. It is the only tool that I am aware of that shows radiation recurrence results for ipsilateral/same breast with or without hormone or chemo therapy. As my breast surgeon asked, what if you cannot tolerate an AI or tamoxifen? This tool indicated, as do research studies, that radiation can be more effective than an AI against at least same breast recurrence. From what I understand, a new primary or contralateral breast cancer may be better avoided with an AI, given that ER+ BC has a repeat risk of decades, not just 5 years. My ONCO DX score was an 8, which indicated relatively low risks for metastatic spread with or without hormone adjuvant therapy and no need for chemotherapy.

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I had a partial masectomy and opted out of radiaiton. They were going to do it but when I talked to the Dr. he said it was my choice. After I said that I really felt that I didn't need it, he agreed but said if I changed my mind later, I could have it. He said some people are afraid not to have it. I take the pill and am monitored all the time so I feel comfortable. Every case and every person is different. Good luck making your choice and just be comfortable with it. Many Blessings to you.

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I had a lumpectomy 10 years ago for DCIS Stage 0 followed by radiation with no further mediation or treatment. For me, the short-term discomfort of radiation was a far better choice than risking a recurrence of breast cancer. My energy was certainly sapped for a time, but the Comfort Sling was invaluable in protecting my skin from any kind of irritation and/or pain.

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@tapgirl

I had a lumpectomy 10 years ago for DCIS Stage 0 followed by radiation with no further mediation or treatment. For me, the short-term discomfort of radiation was a far better choice than risking a recurrence of breast cancer. My energy was certainly sapped for a time, but the Comfort Sling was invaluable in protecting my skin from any kind of irritation and/or pain.

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May I ask what is a comfort sling?

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@vivi1

The Tufts Tool https://www.tuftsmedicalcenter.org/ibtr/ helped me decide to undergo radiation therapy after lumpectomy for ER+ IDC. It is the only tool that I am aware of that shows radiation recurrence results for ipsilateral/same breast with or without hormone or chemo therapy. As my breast surgeon asked, what if you cannot tolerate an AI or tamoxifen? This tool indicated, as do research studies, that radiation can be more effective than an AI against at least same breast recurrence. From what I understand, a new primary or contralateral breast cancer may be better avoided with an AI, given that ER+ BC has a repeat risk of decades, not just 5 years. My ONCO DX score was an 8, which indicated relatively low risks for metastatic spread with or without hormone adjuvant therapy and no need for chemotherapy.

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This is the first study I have read that gives direction on w/without radiation and compares also, the recurrence rates w/without AI treatment. A great tool for specific data to help us moving forward. I am relieved to see that my choice of a five day radiation course without AI was best for me. An excellent tool, thank you for sharing. Standard protocols should be revised due to massive side effects from AI pills. Big Pharma is always out there. Blessings to you, hugs

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@mandy75

May I ask what is a comfort sling?

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Comfort Slings are soft tubular cushions on adjustable straps that are sold as single slings to fit under a single breast or as double slings to encompass both breasts at once. I began using the single sling the minute I started my radiation treatment. It protected the area beneath my breast from accumulating perspiration and prevented the abrasion of skin rubbing against skin. By the conclusion of my treatments, the area had darkened slightly but there was no irritation, no broken skin. The sling undoubtedly minimized the side effects of radiation. After my radiotherapy was completed I switched to wearing the double sling – especially during the summer as a simple and effective means to keep me irritation-free. I haven’t had a need for prescriptive topical medications since Look it up:ComfortSlings.com.

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Thank you for responding! I’m trying to gather as much info before surgery and after. Where do you purchase them from?

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