How important is taking hormone blockers after surgery for IDC?

Posted by cadunkin @cadunkin, Sep 5 8:39am

I’m 71 & diagnosed with IDC. The tumor was very small, clean margins & no lymph node involvement. After much research & discussion with my oncologist I am leaning toward 3 weeks of radiation & no hormone blocking drugs. I understand that there is more risk of cancer returning, but the difference in that risk doesn’t seem worth the side effects of the drugs. It’s important to me to remain active so the bone loss, joint pain & fatigue would greatly affect my quality of life. I would greatly appreciate all discussion on others that have made this decision & how they are doing. All of it is scary! Thanks much everyone.

Interested in more discussions like this? Go to the Breast Cancer group.

I am 67 and also had a small tumor. I had a lumpectomy followed by radiation , nothing in my lymph nodes. I have since been on Exemestane, Anestrozole and am currently on Letrozone. The side affects for me were all bad so I may try Tamoxifen next but am not very hopeful. The bone pain is better on the Letrozone but I am still very tired, have hot flashes and headaches. My dry eye condition is also much worse.I have considered not taking them at all but am scared not to. The ones that have no side affects are very fortunate. It’s depressing because I recently retired and don’t feel like doing much. Everyone is different. Good luck to you!!

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@cadunkin, this is a question that many members have asked in the group. Here are a few discussions for reference.

– Any early (less than 5yrs) local recurrence of early stage IDC? https://connect.mayoclinic.org/discussion/any-early-less-than-5yrs-local-recurrence-of-early-stage-idc/
– Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/
– Oncotype DX Test: What does it all mean? https://connect.mayoclinic.org/discussion/oncotype-test/

Whether to take hormone blocking treatment or not is a very personal decision informed by medical expertise. It sounds like you and your oncologist have arrived at a decision that is right for you, taking into consideration your age, lifestyle, diagnosis, tumor characteristics and treatments. Are you questioning your decision?

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I had a lumpectomy in October, 2021. A Stage 1A tumor, under 1 cm in size, with clean margins and a clean sentinel node biopsy. Thankfully, my oncologist suggested that we have genomic testing done as well. (And, just as thankfully, insurance covered the high cost.)

The OncotypeDX showed a very low 'risk of recurrence within 9 years' and, after consulting with two oncologists, I declined aromatase inhibitors, after two tries, due to side effects of joint pain and concern about elevated cholesterol and bone health. I might have discontinued the drugs anyway but the genomic testing helped provide some answers. (For example, none of the known risk-increasing mutations were found in the tumor sample provided from my lumpectomy.)

Because I have osteopenia, I knew that I would end up on both an aromatase inhibitor and some osteoporosis drug, because taking the former would necessitate taking the latter as well. And then have side effects from both to deal with.

If you can take tamoxifen, it does not accelerate bone density loss and would be a choice worth considering further?

For whatever it's worth, I have two friends, one in her 60s and the other in her 70s, who also declined
the drugs after early-stage lumpectomies. It's been 4 and 6 years, respectively, since their surgeries and neither has had a cancer recurrence. One of them also based her decision on a very low risk of recurrence score on an OncotypeDX test. I think older women put heavier emphasis on present day quality of life over drug side effects for some possible future payoff. Or maybe the covid pandemic has fostered a kind of renewed sense of carpe diem as my oncologist suggested once.

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I had lumpectomy in 2016, microscope cancer in Sentinel node others were clear. Once score of 8, could not tolerate pain from Als…tried 3, and had no radiation for fear of heart and lung damage since I already have those… Now six years later they find armpit node they say is cancer..same as before.. Grade 2,idc…on ultrasound…. Nothing in breasts!! Facing surgery for dissection.

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@aej1954

I am 67 and also had a small tumor. I had a lumpectomy followed by radiation , nothing in my lymph nodes. I have since been on Exemestane, Anestrozole and am currently on Letrozone. The side affects for me were all bad so I may try Tamoxifen next but am not very hopeful. The bone pain is better on the Letrozone but I am still very tired, have hot flashes and headaches. My dry eye condition is also much worse.I have considered not taking them at all but am scared not to. The ones that have no side affects are very fortunate. It’s depressing because I recently retired and don’t feel like doing much. Everyone is different. Good luck to you!!

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I have dry eyes and it has seemed much worse the past few months. I started taking Anastrozole in May…I thought it was allergies but my regular drops my ophthalmologist gave me didn’t help. This might be the explanation. Thanks and I hope you do well.

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@jaynep

I have dry eyes and it has seemed much worse the past few months. I started taking Anastrozole in May…I thought it was allergies but my regular drops my ophthalmologist gave me didn’t help. This might be the explanation. Thanks and I hope you do well.

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Thank you! I think it dries out everything!!

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I was on arimidex for 3 years and Tamoxifen for 7 years….the side effects were minimal and they kept my cancer at bay. When taken off Tamoxifen my cancer recurred…so my advice is to give it a try…having your cancer not return as a stage IV disease is the goal.

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I am in virtually identical situation (71 yrs old) and after trying several now take no Rx. Much better!

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@callalloo

I had a lumpectomy in October, 2021. A Stage 1A tumor, under 1 cm in size, with clean margins and a clean sentinel node biopsy. Thankfully, my oncologist suggested that we have genomic testing done as well. (And, just as thankfully, insurance covered the high cost.)

The OncotypeDX showed a very low 'risk of recurrence within 9 years' and, after consulting with two oncologists, I declined aromatase inhibitors, after two tries, due to side effects of joint pain and concern about elevated cholesterol and bone health. I might have discontinued the drugs anyway but the genomic testing helped provide some answers. (For example, none of the known risk-increasing mutations were found in the tumor sample provided from my lumpectomy.)

Because I have osteopenia, I knew that I would end up on both an aromatase inhibitor and some osteoporosis drug, because taking the former would necessitate taking the latter as well. And then have side effects from both to deal with.

If you can take tamoxifen, it does not accelerate bone density loss and would be a choice worth considering further?

For whatever it's worth, I have two friends, one in her 60s and the other in her 70s, who also declined
the drugs after early-stage lumpectomies. It's been 4 and 6 years, respectively, since their surgeries and neither has had a cancer recurrence. One of them also based her decision on a very low risk of recurrence score on an OncotypeDX test. I think older women put heavier emphasis on present day quality of life over drug side effects for some possible future payoff. Or maybe the covid pandemic has fostered a kind of renewed sense of carpe diem as my oncologist suggested once.

Jump to this post

Callaloo,

I just found this site and am thrilled! Your 1st paragraph almost made me fall off my chair : ) I had a lumpectomy in 2007. I was stage 1 with clear margins and a clean node. My oncologist was telling me to set an appt. to be seen in 6 months. Luckily I had a breast cancer chat room mentor tell me to ask for the OncotypeDX genomic testing to be done. Unfortunately back then the insurance did not pay for it. It cost us just under $5,000.00. My tumor test results put me in the mid-range for recurrence. I was in Red Devil chemo within the week.

I also opted for what was new then for my radiation called MammoSite High-Dose Rate (HDR) Radiation Therapy. It works from inside the breast, directly targeting the area where cancer is most likely to recur. Radiation seeds are delivered via a MammoSite balloon catheter as directed by the treatment plan. After each twice-daily treatment, the seeds are removed. No radiation remains in the breast in between treatments.

MammoSite spares healthy tissue and organs from the effects of radiation and allows treatment to be completed in just five days instead of five to seven weeks.
They implanted it at the same time as lumpectomy surgery 01/17/2007. I had to keep my arm under my breast to support the weight of it. My chemo was completed 05/30/2007. The radiation wasn’t started for another month so I was still carrying my girl around. The delay was due to the Neulasta shots to build my blood counts back up. What they didn’t know then was my breast would look like Extreme sunburn with my nipple cracking and bleeding. After it cooked me from the inside they removed the saline, deflated it, and ripped it out of me skin and all with no pain medication or numbing.

I did 10 years of Arimidex, 3-hour diagnostic mammos every 6 months with no recurrence. I thought cancer was in the rearview mirror. I had 2 blissful years with screenings only before they detected the breast cancer was back. This time it hadn’t been detected as early because of the 2-inch ball of scar tissue from radiation.

Don’t ask how my very recent double mastectomy went or should I say how it is still going since May 25, 2022. All I know is I’m lucky to be alive and it’s always a great day when I wake up. AND I don’t have to carry my girl any longer LOL! Praying for Blessings to all, Lynne

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@jbp

I was on arimidex for 3 years and Tamoxifen for 7 years….the side effects were minimal and they kept my cancer at bay. When taken off Tamoxifen my cancer recurred…so my advice is to give it a try…having your cancer not return as a stage IV disease is the goal.

Jump to this post

“ I was on arimidex for 3 years and Tamoxifen for 7 years….the side effects were minimal and they kept my cancer at bay. When taken off Tamoxifen my cancer recurred…so my advice is to give it a try…having your cancer not return as a stage IV disease is the goal.”
@jbp What was the time interval of stopping tamoxifen and cancer reoccurrence? Also what stage cancer? Praying for you during this second bout of cancer. Please let us know how you are doing. ((HUGS)))

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I feel like The OncotypeDX test is the most important test you can get. It looks at the tumor that was removed. It is an indicator of reoccurrence percentages. Mine was 22 – so in the middle gray area. I did not need chemo, but my oncologist who I trust wanted me to take an AI for 5 years. I was 62, so agreed. I agree this is a personal decision and you mut weigh quality of life. Something like 60% of women have NO side effects. I've personally met several who completed the full 5 years with none. So make the decision that is best for you.

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@bcwarrior

Callaloo,

I just found this site and am thrilled! Your 1st paragraph almost made me fall off my chair : ) I had a lumpectomy in 2007. I was stage 1 with clear margins and a clean node. My oncologist was telling me to set an appt. to be seen in 6 months. Luckily I had a breast cancer chat room mentor tell me to ask for the OncotypeDX genomic testing to be done. Unfortunately back then the insurance did not pay for it. It cost us just under $5,000.00. My tumor test results put me in the mid-range for recurrence. I was in Red Devil chemo within the week.

I also opted for what was new then for my radiation called MammoSite High-Dose Rate (HDR) Radiation Therapy. It works from inside the breast, directly targeting the area where cancer is most likely to recur. Radiation seeds are delivered via a MammoSite balloon catheter as directed by the treatment plan. After each twice-daily treatment, the seeds are removed. No radiation remains in the breast in between treatments.

MammoSite spares healthy tissue and organs from the effects of radiation and allows treatment to be completed in just five days instead of five to seven weeks.
They implanted it at the same time as lumpectomy surgery 01/17/2007. I had to keep my arm under my breast to support the weight of it. My chemo was completed 05/30/2007. The radiation wasn’t started for another month so I was still carrying my girl around. The delay was due to the Neulasta shots to build my blood counts back up. What they didn’t know then was my breast would look like Extreme sunburn with my nipple cracking and bleeding. After it cooked me from the inside they removed the saline, deflated it, and ripped it out of me skin and all with no pain medication or numbing.

I did 10 years of Arimidex, 3-hour diagnostic mammos every 6 months with no recurrence. I thought cancer was in the rearview mirror. I had 2 blissful years with screenings only before they detected the breast cancer was back. This time it hadn’t been detected as early because of the 2-inch ball of scar tissue from radiation.

Don’t ask how my very recent double mastectomy went or should I say how it is still going since May 25, 2022. All I know is I’m lucky to be alive and it’s always a great day when I wake up. AND I don’t have to carry my girl any longer LOL! Praying for Blessings to all, Lynne

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Lynne, it sounds as if the OncotypeDX helped a lot as it triggered a more comprehensive treatment plan. Do I have that right?

I'm awfully sorry to read that the wily cancer for resurfaced but at least you threw everything available at it and will do so again. Recurrence is a haunting thought but the flip side of that is the ten years that it took for it to do so. I keep reminding myself of the cancer success statistics of even forty years ago versus today. In a sense, a lot of recurrences only happen because we're able to live long enough. And have better weapons. An irony of sorts but we're here to ponder it and, if need be, fight again!

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