How important is taking hormone blockers after surgery for IDC?

Posted by cadunkin @cadunkin, Sep 5, 2022

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 Support Group.

@cctoo

Can a CT scan see a tumor or mass?

Jump to this post

I assume so but am not very familiar with CT scans so someone else might opine on this with more information.

REPLY
@sequoia

@vivi1 what was our ‘high estrogen count’? I’m trying to understand estrogen levels. TIA & blessings

Jump to this post

Sequoia, by "my high estrogen count" I meant the ER biomarker on my tumor pathology report was high. 98% of the cancer cells analyzed had estrogen receptors, which was termed "strong". This indicated that my tumor was sensitive to estrogen and that an anti-estrogen adjuvant treatment would be standard care, either by blocking estrogen from binding with the receptor, as with tamoxifen, or by reducing the amount of estrogen in the bloodstream with an inhibitor that prevents the enzyme aromatase from converting androgens to estrogen. Aromatase is found in the adrenal glands, fat, breasts, brain, and muscles. It seems logical that the higher the ER+ percentage, the higher the potential effectiveness of an estrogen blocker in lowering recurrence risk. I have never had my actual blood estrogen level measured.

REPLY

@vivi1 thank you for your explanation. It’s helpful.

REPLY
@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

Hello,
If you don’t mind me asking.
What is considered a low on on oncotype score?
I am 63.
I know there are different margins for 50 and up.

REPLY

Cadunkin, I am 69 and went thru the exact same as you. I had it in both breasts. I chose to stop after 6 months, and it was the best decision I ever made. I am way more active, have lost 65 pounds, and walk 2 miles every day. I have never felt better in my whole life. I eat plant based whole foods, NO OIL, and it has been lifechanging for me. It has been almost 3 years, I was diagnosed right before covid, which really affected my treatment, and I still cannot bend any of my fingers, a side effect from the drugs. My hands swelled like baseball mitts. I will never get my wedding ring on again because of all the joint disfigurement, but I am living the life! Best to you on your journey!

REPLY
@nahhey

Hello,
If you don’t mind me asking.
What is considered a low on on oncotype score?
I am 63.
I know there are different margins for 50 and up.

Jump to this post

As I have read, there are two categories.

Premenopausal 18 and under is considered low.

Post menopausal 25 and under is considered low.

REPLY
@nahhey

Hello,
If you don’t mind me asking.
What is considered a low on on oncotype score?
I am 63.
I know there are different margins for 50 and up.

Jump to this post

I don't remember the cut-off between low and intermediate risk for the OncotypeDX but will try to find the report with that information. I'm not certain what you're referring to as "different margins for 50 and up" but the OncotypeDX looks at the genomics of the tumor tissue. I'm not aware that it takes age or other demographics into account. It might, but that's not my impression.

OncotypeDX results can be surprising. There is one case, I believe still on their website, of a stage 4, large tumor cancer that showed a very low risk of recurrence. And a stage 1, DCIS with a very high risk of recurrence. This is interesting to me because oncologists looking at the biopsies might assume totally different risk profiles for these tumors based on their experience. And might be inclined to underestimate the risk for the stage 1 DCIS or inadvertently undertreat it.

REPLY
@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!!

Jump to this post

Good morning aej1954, I'm about to turn 78 years old. I'm on my 5th year of AIs. I started with some of the ones you've mentioned here after my lumpectomy, with all the intolerable side effects you've mentioned here. Finally I was put on Tamoxifen and that has been MUCH better. There are side effects, but tolerable ones unlike the ones I first tried. December will be my last month after 5 years of AIs. (Hopefully!) I wish you the best of luck with your decision and if you do try Tamoxifen, I hope you find that it is tolerable for you.

REPLY
@sparklegram

Good morning aej1954, I'm about to turn 78 years old. I'm on my 5th year of AIs. I started with some of the ones you've mentioned here after my lumpectomy, with all the intolerable side effects you've mentioned here. Finally I was put on Tamoxifen and that has been MUCH better. There are side effects, but tolerable ones unlike the ones I first tried. December will be my last month after 5 years of AIs. (Hopefully!) I wish you the best of luck with your decision and if you do try Tamoxifen, I hope you find that it is tolerable for you.

Jump to this post

Good morning!! That's great to know that maybe there is one that will work for me. Life is short and I don't want to spend whatever time I have left feeling miserable! I'm happy you have your drug plan almost complete. I think will try tamoxifen and pray it will be better!! Good luck to you!

REPLY

anjalima | @anjalima | 1 day ago
At 71, and After a “ normal” mammo and ultrasound in 10/21 (but a persistent symptom) I PERSISTED… until an MRI revealed 2 tumors IDC. ONCOTYPEs 14 and 20. ER+, HER2-, I had a unilateral mastectomy Feb. 2022. Reconstruction began at time of surgery and completed exchange surgery in July. I began Anastrozole in April. I’m mid way through month 5 and I have very minimal obvious side effects … some days my hips ache until I stretch. I will do a one year DEXA ( insurance won’t pay until 2 years) to check in on possible unforeseen side effects . My advice is to try ( anti) hormone treatment if advised by oncologist and see if will work for you. If it does you are one of the 60% who are lucky enough to use this tool. Science and incredible amounts of research tells us that it is beneficial for hormone + BC.
I recently read the informational insert again and I surmised that there is potential wiggle room as far as dosing goes. Worth a conversation with oncology.

But, like you, I question everything. I declined suggested radiation because I technically qualified for the TAILOR RT clinical trial <25 ONCOTYPE, which is studying AI alone vs AI plus standard fraction radiation. Many institutions are offering this clinical trial to determine the benefit of radiation in certain clinical pictures. It was the TAILOR RX clinical trial that led to ONCOTYPING and since 2015 has saved 70% of BC patients from unneeded chemotherapy.

Science and research are on our side trying to fine tune treatments that are beneficial while trying to minimize risk. Supporting research is critical!

As I will be followed very closely with mammo and MRI alternating 6 mos. I’m hoping that any future local recurrence will be found.

We make the best possible decisions with the information we have weighing benefit, risk and quality of life.

A collective hug to all of us on this healing journey. 🌸

REPLY
Please sign in or register to post a reply.