Stage 1 lobular breast cancer, anyone no treatment after surgery?

Posted by wyowyld @wyowyld, Feb 23, 2025

I am one week out on my lumpectomy and according to recent statistics, have a 5 to 7% chance of recurrence in the next five years with this type of cancer without treatment. I cannot imagine putting my body through all the side effects of radiation and AI treatment when I have a 95% chance of nothing happening. Apparently with this cancer the risk is late recurrence, after 10 years. I am so torn and stressed out by the decision I have to make. They asked me to make it in the next two weeks. Am I the only one who has considered not taking any other treatment after surgery because I honestly believe there will be big advancements in that period of time?

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Profile picture for brightlight66 @brightlight66

@jmab Best wishes to you jmab! I'm glad you're doing the low dose. I hope you don't have any side effects at all. I just read about Exemestane taken 3X/week had a non-inferior effect and intermittent dosing of Letrozole too. Of course the studies are not funded by the drug companies. So here we are...pioneers marching forward doing our best. I've attached what I found here:

Reduced dosing schedules have been explored as a way to potentially manage side effects, which are a common reason patients may discontinue their medication.
One study found that taking the AI exemestane on a schedule approximately every other day was comparable to a once-daily dose in suppressing estrogen levels in compliant participants. This research suggests that a less frequent schedule might maintain effectiveness while potentially being easier for patients to tolerate.
Another study investigating intermittent dosing of letrozole also indicated notable estrogen suppression, potentially offering benefits for patients' quality of life and adherence to treatment.

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@brightlight66 Yes, we're pioneers alright...partly because we are determined to advocate for ourselves & not just accept "one-size-fits-all"! Somewhat unrelated but interesting, my radiologist told me that the 5-day radiation therapy that I had (& is proven to be as effective as longer plans, wildly more convenient
& less harmful in other ways, too, was clinically tested mostly in England because US companies didn't like the fact that it was less profitable. Can you believe that?! In other words, nothing prescribed to us should be taken at face value. Thanks for the info! I support yout efforts 100%!

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Profile picture for jmab @jmab

@brightlight66 Yes, we're pioneers alright...partly because we are determined to advocate for ourselves & not just accept "one-size-fits-all"! Somewhat unrelated but interesting, my radiologist told me that the 5-day radiation therapy that I had (& is proven to be as effective as longer plans, wildly more convenient
& less harmful in other ways, too, was clinically tested mostly in England because US companies didn't like the fact that it was less profitable. Can you believe that?! In other words, nothing prescribed to us should be taken at face value. Thanks for the info! I support yout efforts 100%!

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@jmab You got it exactly about not accepting "one-size-fits all!
Thanks for sharing about the 5-day radiation therapy clinical results from ENGLAND. It figures that US companies were after the profits.
I believe that is why there's no funding for breast cancer clinical studies looking at lower doses of AIs...just not profitable and is in conflict with selling more drugs. When I told my Oncology Nurse Practitioner that I was taking Exemestane 3X/week, she dismissed it as ineffective. I didn't bother to share that Dr. Andrea De Censi, oncologist from Italy, who has done the research, recommends taking every other day if one has side effects. Europe and the UK seem to be more progressive than US here.

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