Hormone blockers - do I or don’t I?
hi- I’m a newbie. I’m 72, Diagnosed Dec 2024 with IDC, ER+PR+HER2+, no lymph nodes, tumor 2.2, stage 1B, grade 3, caught early.
finished 6 rounds chemo : Herceptin, perjeta, taxotere, carboplaton, had lumpectomy this week- only removed sentinel node ( which is standard) and at this point will do 5 radiation treatments.
My dilemma is whether or not to take hormone blockers for 5 years. Side effects are pretty horrible ( and I know side effects are different for everyone) and seem to be not worth the risk of osteoporosis, heart, lung, liver damage, amount all the other risks. I have asked my oncologist and surgeon if there is research on the different in the percentage of recurrence by taking them vs not taking them and get very little info from them- they both badger me into taking them. At this point my decision is not to take them. I’d rather have quality of life, I am an avid traveler, scuba diver, adventurer and I don’t want to trade that in and spend years dealing with a whole host of other health issues.
can anyone shed some light on this or have information on the benefits vs risks?
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Hi @gagirlnow, Aromatase inhibitors reduce the risk of recurrence by about 50% while tamoxifen reduces it by about 40%. Ask your oncologist what your risk of recurrence is without taking them. Alternatively ask what your risk of recurrence is while taking them since you can figure it out that way, too. For example, if your risk of recurrence is 10% not taking anything it would be 5% if taking AIs and 6% if taking tamoxifen. These statistics apply to large groups and can’t predict what will happen to you. A recurrence could be local or distant. There is no guarantee that you won’t have a recurrence if you take them. Some people try the AIs and quit if they can’t tolerate any of the three options. Oncologists push them since their job is preventing recurrence.
You have to decide how much risk you are comfortable with and make a decision you won’t regret no matter what happens. Good luck figuring out what is best for you.
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@gagirlnow - Hi, and welcome to the community! Thank you for posting. Many members have faced similar questions, and we hope you’ll find helpful insight here soon.
In the meantime, these pages from our main site may offer useful information as you consider your options:
We hope you’ll keep posting and connecting. We’re here for you.
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Hi Gagirlnow - I’m sorry you had to join us. You noted that you asked your doctors for risk of recurrence with and without hormone therapy and they did not answer. This certainly makes it more difficult to make an informed decision although not everyone experiences side effects that limit their activities.
I was also in the same situation that my doctors would not provide risk of recurrence info and yet strongly encouraged me to take anastrozole which I did for almost 2.5 years. I finally quit as I believed my risk was low and I was concerned about the side effects I experienced.
The Predict UK calculator ( I cannot link it but you should be able to google it) for breast cancer provides information on survivability but not on recurrence. You can use the tool to show survivability with and without hormone therapy.
Wishing you the best.
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I was diagnosed with ER+ PR+ HER-, stage 1, grade 2. Negative for the breast cancer gene.
I had a lumpectomy and doctor said she didn't get it all and I had a choice of another lumpectomy with radiation or a mastectomy. I chose mastectomy of left breast. Oncologist has suggested Anastrozole for five years. I told her considering my age of 74, I'm very concerned about side effects. I already have osteoporosis.
I asked her the odds of recurrence with and without the drug. she said with drug 8%, without drug 15%. I'm leaning towards declining the drug. I have an appointment with another doctor for a second opinion. I expect she will probably say the same thing . Don't know if I will keep the appt. It's at a pretty inconvenient location.
Any opinions? @gagirlnow ? @maggie15
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Hi @mary9999, If an Oncotype DX was done, the numbers are based on your genomic profile and won’t change with a second opinion. Before I got my Oncotype my MO provided a guesstimate which was pretty close to the actual number. He was definitely in favor of AIs but told me I had valid reasons to opt out and was satisfied I understood the risk I was taking. From what I’ve read here some MOs won’t even have a discussion or provide an estimate if an Oncotype wasn’t done. That would be a reason for getting a second opinion.
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I did have oncotype testing. My oncologist, as I said, recommended the hormone blocker but when I told her of my concerns she said they were valid.
Bottom line - she said she would recommend I try the Anastrozole and I could stop taking it if I had side effects.
I think 85% likelihood of the cancer not recurring isn't too bad.
Oncologist wants me to see her twice a year even if I don't take the drug. I don't really see the reason for that. I'll ask my surgeon about it when I see her in December. I had breast cancer eight years ago (in situ) and the oncologist wanted to follow me. surgeon said no need for that and I was just followed by a breast care provider and had alternating ultrasounds and mammograms.
If the surgeon doesn't want to answer on that, I'll ask the oncologist why she wants to see me twice a year.
Thank you for responding
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I still see my MO twice a year even though I am not taking AIs. I originally thought it was a waste of time but four years later I’m glad I do. I’ve developed issues (including pain and an indeterminate tumor in my hip) where I need her input, help and referrals to other doctors. I think they want to keep an eye on you since your risk of recurrence, while not bad, is higher than it would have been. If my situation changes I would start taking AIs or other meds. It’s much easier to get an appointment if you need it when you are a regular patient. Initially I alternated between the MO and her NP but now I see only the doctor. Many people stop the appointments after 5 years if things stay stable but others continue on. It depends on the doctor, the facility and your preference.
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