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Topic: Could someone answer a few hormone therapy questions?

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Oct 5, 2021 02:59PM - edited Oct 5, 2021 03:03PM by macdebbie

macdebbie wrote:

I was hoping to get some answers at my appt today with my MO, but basically didn't get very far.

1) I understand that with AIs there is the risk of bone thinning/fractures. So they prescribe a bisphosphonate. If someone already has osteoporosis, what would be the reason to take an AI and a bisphosphonate rather than just take Tamoxifen, which is protective of bones?

2). I've read that once you start a bisphosphonate you can't stop it, or your fracture risk goes way up. Is that true?

3). What is the deal with dental work? No one knows what they are going to need to have done for dental work within a 5 year timeframe. What can/can not be done and what is the risk?

4). The one thing I did find out today (after much prodding) was that if a person has taken birth control pills and not had a blood clot, then their risk of blood clots with Tamoxifen is very low. Does anyone know what the risk of uterine (or is it endometrial cancer) is?

I was hoping to get a comparison of the two drugs today - but that didn't happen. The MO basically said he just uses AIs and it's "my choice" but it's hard to make a choice when you don't have the information.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 03:13PM exbrnxgrl wrote:

I’ll address a couple of your concerns.

- Many of us have stopped bisphosphonates! I used an older drug, Aredia, for 3 years and stopped because my mo was concerned about spontaneous femur fractures. Not a high incidence se, but we moved to simply monitoring my bone health. That was seven years ago and my osteopenia has not progressed.

- Osteonecrosis of the jaw (ONJ) is also a low incident se. Most mo’s will ask you to have any invasive dental work done prior to starting an AI. If you have a problem that involves invasive dental work you may be asked to go off the AI for a period of time prior to the dental work. Not a fun side effect but not a common one either

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
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Oct 5, 2021 03:49PM LillyIsHere wrote:

1) I understand that with AIs there is the risk of bone thinning/fractures. So they prescribe a bisphosphonate. If someone already has osteoporosis, what would be the reason to take an AI and a bisphosphonate rather than just take Tamoxifen, which is protective of bones?

1. Some research favors AI comparing to tamoxifen. Among postmenopausal women with hormone receptor-positive breast cancer, aromatase inhibitors (alone or after tamoxifen) offer the same or slightly greater benefit compared to tamoxifen alone [92,106-109]. https://www.komen.org/breast-cancer/treatment/type/hormone-therapy/aromatase-inhibitors/

Bisphosphate is recommended for two reasons:

a. help your bones.

b. it shows some anti-cancer properties

2). I've read that once you start a bisphosphonate you can't stop it, or your fracture risk goes way up. Is that true?

Not true. I am prescribed bisphosphonate every 6 months for 3 years only. I don't have osteoporosis but in my case is being used to slightly reduce recurrence since I didn't have chemo.

3). What is the deal with dental work? No one knows what they are going to need to have done for dental work within a 5 year timeframe. What can/can not be done and what is the risk?

It is rare to have a problem with bone healing if you remove a tooth. Especially for patients who take bisphosphonate every 6 months and not monthly.

4). The one thing I did find out today (after much prodding) was that if a person has taken birth control pills and not had a blood clot, then their risk of blood clots with Tamoxifen is very low. Does anyone know what the risk of uterine (or is it endometrial cancer) is?

I have refused tamoxifen because my Mom had a blood clot after surgery. I don't know the %risk of uterine cancer. However, all these medications are toxic and many times with side effects. We take it to reduce the risk of recurrence from this deadly disease.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy
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Oct 5, 2021 03:50PM jhl wrote:

Debbie,

I don't have a lot of time right now but I'll try to answer some of your questions.

1. Studies have shown the superiority of AI's relative to tamoxifen in overall survival in post-menopausal women. It is important to not lose track of the primary purpose of taking anti hormonal medication - to improve both progression free and overall survival. Now, if someone can absolutely not take any of the AI's, and there are many, then tamoxifen is the next choice. Tamoxifen comes with its own serious side effects so it also has to be evaluated with risk/benefits. Osteoporosis is a genetic disease as well as a side effect of reduced estrogen action on the bones due to taking AI's. So, if one already has osteoporosis, there needs to be a discussion of risk/benefits of taking a bisphosphonate or a monoclonal antibody like Denosumab. The results of your DEXA scan will guide you & your physician on when or if to start therapy. The very best way to avoid needing any pharmacologic treatment of osteopenia or osteoporosis is to exercise with emphasis on impact exercises on long bones - the ones in your legs. Walking, running, tennis, dancing, etc all help to maintain the integrity of bones. Exercises like swimming and yoga are great but they don't improve bones. Of course, taking calcium and vitamin D help as well particularly if you are deficient.

I need to go right now but I hope I've answered this first question. If not, I'll be happy to clarify further. I'll be back later to address the others.

Jane

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Oct 5, 2021 04:18PM macdebbie wrote:

Jane, thank you so much. Very helpful. I guess I was questioning because when asked today the MO said the difference between and AI and Tamoxifen in someone with such a small tumor with great pathology is very small. I already have osteoporosis, which progressed from osteopenia two years ago, so the MO said I would need Zometa I addition to the AI, so why not just take the hormone therapy that doesn't require an added drug if the efficacy is so similar, and if as the MO stated, the risk of blood clots, which is one of the major side effects of Tamoxifen is very small since I did not have blood clots with 20 years of taking birth control pills? The one question that did not get answered is if my previous cervical cancer puts me at greater risk of uterine cancer. My Invitae genetic testing was all negative, indicating that I am not at high risk for any cancer (so not sure how I got breast cancer and cervical cancer). I was hoping to learn if one drug over the other (AI vs Tamoxifen) would be better given my osteoporosis, diabetes, kidney disease, high blood pressure, hx of hypertensive crisis, atherosclerosis, arrhythmia, cataracts, etc., but I guess I will have to weed through that on my own or meet with my cardiologist, endocrinologist, nephrologist and eye specialist to see if they can weigh in.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy
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Oct 5, 2021 07:09PM jhl wrote:

Debbie,

I'm back & glad my info helped a bit. Now, let's talk about blood clots. Malignancy of any kind induces what is caused a hypercoaguable state or prothrombotic state. The tumor cells themselves interact with blood & vascular endothelium which causes a release of molecules that will initiate the clotting system. So, you don't have to do anything at all to have a greater chance of blood clots. You already do just because you have cancer.

Tamoxifen is a SERM or selective estrogen receptor modulator. This means it has mixed estrogenic and antiestrogenic activity, depending on the tissue. It has antiestrogenic activity in the breast but estrogenic activity in the uterus and liver (this is the reason why women on long term tamoxifen are at higher risk of endometrial cancer). The estrogenic effects on the liver (which makes clotting factors) are suspected to be the reason behind blood clots for women taking tamoxifen. Let's talk about the estrogenic effects on the uterus. The risk of endometrial cancer increases with duration of therapy. It appears to be 2% risk for 2-5 years and 7% for 5 years although those numbers may not be up to date.

So, you have your underlying prothrombotic state coupled with the estrogen effects on the liver and you have a higher risk of clotting. The estrogenic effects on the uterus may cause increase risk of cancer. You can see why this is not the first option for post menopausal women.

Debbie - does this explanation help on clotting & uterine cancer risk? If not, I will clarify more if you want.

Jane


Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
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Oct 5, 2021 07:19PM macdebbie wrote:

Jane, thank you again! Are you a scientist? How do you know so much?

Do you happen to know what the risk of increased risk (over the risk I already have) of blood clots is? Thanks for the info. on the endometrial cancer risk.

Dx 7/29/2021, IDC, Right, <1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 9/13/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy

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