1. < Breast Cancer

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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Colleen Young, Connect Director | @colleenyoung | May 19, 2023
In reply to @mcaj "Had RS lumpectomy in '97, nodes not involved, maxed out on chemo/radiation at that time. Did..." + (show)
@mcaj

Had RS lumpectomy in '97, nodes not involved, maxed out on chemo/radiation at that time. Did SSDI for 1 1/2 yr until couldn't take it due to side effects. 24 yrs later, had RS mastectomy when DCIS found in new lump, nodes not involved. Opted out on AI with concerns of side effects. Found new lump in scar tissue along chest wall with same BC cells as original cancer Jan 2023. After wide excision of chest wall, clean margins but rouge node involved in biopsy. Radiation recommended for 15 rounds plus AI. Truly concerned about re-radiation/radiation. Honestly am uncertain.

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Hi @mcaj, I understand you're nervous about further treatment. You need to be comfortable with what is happening with your body.

Have you had a discussion with your cancer team about the risks and benefits of doing radiation and of not doing radiation. Ultimately, the decision is yours. But you definitely want to make an informed decision and not one based on fear.

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katho3 | @katho3 | May 23, 2023

Like rene1636, I had a lumpectomy (4/4/23). Low grade, noninvasive, stage 0 DCIS, 7mm with 6mm clear margins, no family history. I’m 65. Not taking hormone blockers. With the Sloan Kettering nomogram, my chances of recurrence are 6% in 5 years and 9% in 10 with lumpectomy alone. Radiation would reduce those already low numbers by 50%. I’m leaning toward saving my one opportunity for radiation in case of an invasive lesion in the same breast in the future. These are all difficult decision, I know.

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2 replies
Zebra | @californiazebra | May 23, 2023
In reply to @katho3 "Like rene1636, I had a lumpectomy (4/4/23). Low grade, noninvasive, stage 0 DCIS, 7mm with 6mm..." + (show)
@katho3

Like rene1636, I had a lumpectomy (4/4/23). Low grade, noninvasive, stage 0 DCIS, 7mm with 6mm clear margins, no family history. I’m 65. Not taking hormone blockers. With the Sloan Kettering nomogram, my chances of recurrence are 6% in 5 years and 9% in 10 with lumpectomy alone. Radiation would reduce those already low numbers by 50%. I’m leaning toward saving my one opportunity for radiation in case of an invasive lesion in the same breast in the future. These are all difficult decision, I know.

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Hi @katho3 -- In 2013, at 54, I had a double mastectomy since I have the BRCA2 mutation. (We later discovered I also have the CHEK2 mutation.) My cancer was stage 1, medium grade, DCIS, LVI, 7 mm, clear margins, HR/ER+ HER2-. Radiation and chemo were not recommended due to the mastectomy and stage 1. My surgeon told me 1-3% chance of recurrence. Then my oncologist (her partner) told me I had a 99.6% survival rate with a hormone blocker and 99.2% without so he recommended I didn't take it. Ultimately, I only did the surgery.

In 2020, I found a lump in my chest and pectoral muscle. It was now highly aggressive cancer. Removed by surgery, but I had a positive margin. 37 radiation treatments. Now on Kisqali and Letrozole for over 2 years and for as long as they keep working. I'm 64 now, the meds have side effects, but nothing to make me stop taking them.

My original surgeon acted shocked I didn't take a hormone blocker originally and said it would have reduced my risk of recurrence by 50%. I saw her the entire 7 years for follow-ups and she knew I wasn't taking one. CYA

Bottom line - my current oncologist completely disagrees with what I was told back in 2013 both about risk and meds. You may want to consider getting a second opinion for peace of mind. Also remember that you can always stop taking the hormone blocker if you can't tolerate the side effects. I hope this is helpful. Blessings to you!

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3 replies
dyevooshka | @dyevooshka | May 23, 2023
In reply to @dyevooshka "So happy to find a friend in the same stage of treatment. I hope the burn..." + (show)
@dyevooshka

So happy to find a friend in the same stage of treatment. I hope the burn clears up soon and that the Anastrozole is without side effects.

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I am on my 7th day of Anastrozole and so far so good. Maybe some absentmindedness! My sunburn and peeling has pretty much cleared up. Still sensitive to the touch deep in the lumpectomy area.

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1 reply
mdr3 | @mdr3 | May 24, 2023
In reply to @californiazebra "Hi @katho3 -- In 2013, at 54, I had a double mastectomy since I have the..." + (show)
@californiazebra

Hi @katho3 -- In 2013, at 54, I had a double mastectomy since I have the BRCA2 mutation. (We later discovered I also have the CHEK2 mutation.) My cancer was stage 1, medium grade, DCIS, LVI, 7 mm, clear margins, HR/ER+ HER2-. Radiation and chemo were not recommended due to the mastectomy and stage 1. My surgeon told me 1-3% chance of recurrence. Then my oncologist (her partner) told me I had a 99.6% survival rate with a hormone blocker and 99.2% without so he recommended I didn't take it. Ultimately, I only did the surgery.

In 2020, I found a lump in my chest and pectoral muscle. It was now highly aggressive cancer. Removed by surgery, but I had a positive margin. 37 radiation treatments. Now on Kisqali and Letrozole for over 2 years and for as long as they keep working. I'm 64 now, the meds have side effects, but nothing to make me stop taking them.

My original surgeon acted shocked I didn't take a hormone blocker originally and said it would have reduced my risk of recurrence by 50%. I saw her the entire 7 years for follow-ups and she knew I wasn't taking one. CYA

Bottom line - my current oncologist completely disagrees with what I was told back in 2013 both about risk and meds. You may want to consider getting a second opinion for peace of mind. Also remember that you can always stop taking the hormone blocker if you can't tolerate the side effects. I hope this is helpful. Blessings to you!

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Agree! I never even thought of getting a second opinion until all my active treatment was done. In my case, I had no choice about whether to do dose dense chemo and full blown radiation therapy. I just did it. Then after it was done, the oncologist said "we'll do 5 yrs Tamoxifen" I said "wait, what??!! I'm way past menopause" That sounded too cookie cutter to me, and sure enough (after seeking a second opinion at an actual cancer center), it was. I am now on Anastrozole (as well as having done 3 years Zometa) not without cost. My treatment decisions at this point are based on information from medical professionals not engaged in a past generation's thinking AND fear. The fear part is not debilitating, but for me, keeps it real.

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1 reply
young54 | @young54 | Dec 26, 2023

I wonder the same any comments to the question?

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maryjane61 | @maryjane61 | Dec 27, 2023

I have clear margins DCIS stage one insitu, endocrine therapy… why should I do radiation as well??

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1 reply
sue417 | @sue417 | Dec 27, 2023
In reply to @rene1636 "I had DCIS & had a lumpectomy. I chose not to get radiation because my pathology..." + (show)
@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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Hi
What qualifications do you need for oncotype testing?
I am waiting for pathology dcis in situ carcinoma surgery was Dec 15th. Did you go on any hormone meds?

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1 reply
sue417 | @sue417 | Dec 27, 2023
In reply to @tapgirl "I had a lumpectomy 10 years ago for DCIS Stage 0 followed by radiation with no..." + (show)
@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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Hi
What's is a comfort sling

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1 reply
tapgirl | @tapgirl | Dec 27, 2023
In reply to @sue417 "Hi What's is a comfort sling" + (show)
@sue417

Hi
What's is a comfort sling

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ComfortSlings® are soft cushions on adjustable straps that tuck beneath the breast to keep the area dry and to prevent skin-to-skin rubbing and abrasion. I used the sling from the first day of radiation. By my treatments' end, my skin had darkened slightly but was otherwise unchanged - no broken skin; no pain!. The Sling is a game-changer. http://www.ComfortSlings.com

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