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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resort | @resort | Dec 27, 2023
In reply to @sue417 "Hi Have you not had any side effects to this? I am having wicked hot flashes..." + (show)
@sue417

Hi
Have you not had any side effects to this? I am having wicked hot flashes since the doctor took me off my HRT when I was diagnosed with doctor carcinoma. In situ. I am 65 and was on it 5yrs with a yr off then back on 5yrs

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I only have been on tamoxifen for 7 months. Barely noticed side effects other than occasional hot flashes and it past very quickly. I take it before I go to bed. I heard it’s more tolerable if you take it at night.

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1 reply
sue417 | @sue417 | Dec 27, 2023
In reply to @resort "I only have been on tamoxifen for 7 months. Barely noticed side effects other than occasional..." + (show)
@resort

I only have been on tamoxifen for 7 months. Barely noticed side effects other than occasional hot flashes and it past very quickly. I take it before I go to bed. I heard it’s more tolerable if you take it at night.

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Hi
Can I ask how many milligrams your on.

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1 reply
resort | @resort | Dec 27, 2023
In reply to @sue417 "Hi Can I ask how many milligrams your on." + (show)
@sue417

Hi
Can I ask how many milligrams your on.

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20 mg and I’m underweight only 97lb.

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Zebra | @californiazebra | Dec 27, 2023
In reply to @resort "So sorry to hear your story. Is the recurring cancer estrogen positive? Wonder why you are..." + (show)
@resort

So sorry to hear your story. Is the recurring cancer estrogen positive? Wonder why you are taking estrogen blocker. I read that when estrogen positive cancer recur, normally they won’t be estrogen positive anymore. Wish you all the best and can tolerate the drugs for a very long time. Try ground flaxseeds daily (2 table spoons) if the recurring cancer is still estrogen positive. God bless you!

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Hi @resort
Yes, my recurrent breast cancer is ER/PR positive, HER2 negative. I had not heard anything about that being unusual, but thank you for your suggestion and comments.

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nanna1948 | @nanna1948 | Dec 28, 2023
In reply to @maryjane61 "I have clear margins DCIS stage one insitu, endocrine therapy… why should I do radiation as..." + (show)
@maryjane61

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

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To get any cells that might have been missed

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sue417 | @sue417 | Dec 28, 2023
In reply to @dyevooshka "I am on my 7th day of Anastrozole and so far so good. Maybe some absentmindedness!..." + (show)
@dyevooshka

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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Hi
How do they determine which drug you take? I am awaiting pathology results from lumpectomy Dec 15 dcis . I am 65

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blackcat | @blackcat | Dec 28, 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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Why can you have radiation only once?

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blackcat | @blackcat | Dec 28, 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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What does CYA mean? Ask your surgeon why she didn't say anything earlier.

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trinal | @trinal | Dec 28, 2023

I am choosing the same path.
You are the first person to share this that I have encountered.

My question is, how does anyone know if there is cancer in my system now?
If AI is used to prevent Estrogen from landing on cancer cells, and I do not have any cancer in me……. Then taking AI and feeling bad is for what?
Bottom line……how do I find out if cancer is still there?

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2 replies
trinal | @trinal | Dec 28, 2023
In reply to @sue417 "Hi How do they determine which drug you take? I am awaiting pathology results from lumpectomy..." + (show)
@sue417

Hi
How do they determine which drug you take? I am awaiting pathology results from lumpectomy Dec 15 dcis . I am 65

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I heard from my oncologist that Tomoxifen can cause blood clots. If you are prone to clots most doctors will not prescribe Tomoxifen.

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