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Topic: Tamoxifen vs Aromatase Inhibitors and Safety

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 3, 2021 06:01PM

macdebbie wrote:

I've just completed my surgery and am seeing my MO for my 2nd appt (the first was just a meet and greet about a month ago).

A little background - I met with 3 MOs. The first one is at the same practice as the one I chose, which has caused some controversy (it's not usually allowed to choose another from the same practice - not sure why, since chemistry is a big piece of the pie).

Anyway, the first 2 MOs I met with said that they would likely give me Tamoxifen due to the fact that I already have osteoporosis.

The 3rd MO (the one I chose) said that he would likely give me an AI because the side effect with Tamoxifen were much more serious - blood clots and uterine cancer. He made this statement to me after reviewing my entire medical history.

However, I have done some reading, and there are numerous studies that show that AIs have a very high rate of severe cardiac events compared to Tamoxifen, namely and 86% increased risk of heart failure, and a 50% increased risk of cardiovascular mortality and that the FDA required a label change on Anastrozole.

The study I read (and there are others) indicated that many clinicians aren't aware of these cardiac complications or don't take them into account.

I already have numerous cardiac issues. I have diabetes, so already am at risk of cardiac events. I also have high blood pressure, which I have had since I was a skinny 100 lb 20 year old, so I think it's genetic and possibly something to do with my kidneys since my dad died at 32 of kidney failure. In any case, I have been on a beta blocker for the last 25 years or so, and my blood pressure has been well controlled. However, I am extremely sensitive to meds, and ended up in the ER in stroke territory with BP of 286/185 from 2 days on Cipro for a UTI. Weird things like that happen to me. I also have first degree heart block from the Atenolol, and have bradycardia and tachycardia with SVT events. I have been in the ER many times with my heart racing after being woken up from a dead sleep.

So now I am worried.... I wonder if I made a mistake and should have stuck with the 1st MO who although I thought was a little arrogant, told me he would work with me on the meds (we were talking about Tamoxifen) and said "we don't not go in the pool due to fear, and if we have to first dip our toe in the water, so be it".

I just don't want the MO to look at this in a vacuum and treat the cancer, without regard for the potential of devastating consequences.

Given my cardiac issues and my osteoporosis, it seems that Tamoxifen is the safer/better drug for me. Because aside from the cardiac issues with AIs, I would also have to go on a drug like Fosomax or similar due to my osteoporosis and then were are adding even more potential side effects.

Am I going to have a say in this? I should. It's my life. If someone told me I had a 3% greater change of uterine cancer and a 1.5% greater chance of blood clots with Tamoxifen, or an 83% greater chance of cardiac events that could kill me with an AI, I know which one I'd choose.

I also like that Tamoxifen has been around for ages, so is well studied. With AIs, not so much. There's still a lot that they don't know.

Ugh... and I thought surgery was the hard part. I know that surgery came with risks, but I didn't have a choice. That's why I chose lumpectomy, to lower my risks under anesthesia, recovery, complications, etc. And with radiation I don't have a choice either. I know I can get another type of cancer, and there is a risk of lung damage, and heart damage. From what I've read that risk could be lowered with Proton Therapy, but I don't even know if my insurance would pay for that, or how I would be able to travel to a treatment center for the treatment, since the nearest is 4 hours away and we can't afford to live in a hotel for 6 weeks.

But hormone therapy, which most of the doctors who have brought it up gloss over the side effects, seems now like a big deal, and one that could really affect my life - and even shorten it. So if hormone therapy lowers my risk by say 5%, is it worth an 86% increase in a serious cardiac event??

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 3, 2021 06:40PM PamEP wrote:

macdebbie: I have been researching this same issue because I have progressive osteopenia. I have recently put some links on bone health threads. The cardio one is pretty recent.

Article on Aromatase Inhibitor–Induced Musculoskeletal Symptoms: https://ascopubs.org/doi/full/10.1200/OP.20.00113

Article on Cardiovascular Disease Mortality Among Breast Cancer Survivors: https://academic.oup.com/jnci/article/113/2/137/5868410

Dr. Susan Love also talks about aging and cardiovascular issues: https://drsusanloveresearch.org/accelerated-aging/

While my MO recommended Arimidex with Fosamax or Reclast, I said I preferred a SERM to protect my bones and my QOL. He said the uterine cancer and blood clot risks are very low and that the anti-BC estrogen benefits are just a bit lower than with the AI's. I like that tamoxifen does not eliminate all estrogen like the AI's do, and that it is a known drug that has been around for decades and still prescribed routinely for pre-menopausal patients.

So, like you, I think I am going that way, hoping the daily SE's are inconsequential and the long term problems will not develop. I will make my decision at my next MO appointment.

Dx 7/26/2021, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 8/6/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole-breast: Breast
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Oct 3, 2021 07:02PM macdebbie wrote:

PamEP - Wow, thank you for all of this. I will take a look at those links.

I always think it should be up to the patient in the end. I don't mind a doctor saying "I hear what you are saying, but here's what you need to think about..." like my BCS did when I told her I didn't want steroids given during surgery due to my diabetes and she said that it was used as a preventative for laryngospasm which could be fatal, so she wouldn't recommend forgoing it, because I don't know everything obviously.

I just hope that I am listened to. I'm certainly open to discussion. I just don't want to be steamrolled.

I just noticed that you and I were diagnosed almost on the same day - I was diagnosed on 7/29/2021. I also have Stage 1A, Grade 2 though with no node involvement (4 sentinels removed) and had a lumpectomy. Did you have your radiation yet? Are you starting hormone therapy in conjunction with radiation or after?

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 3, 2021 07:19PM - edited Oct 3, 2021 11:02PM by PamEP

My post surgery treatment got off to a slow start. I saw my MO for an initial consultation last week. I agreed to radiation and am waiting for the RO to call for my appointment. In the meantime, my MO has ordered an Oncotype DX test to rule out a need for chemo. He said the RO wouldn't start treatment until he knew the score. I am not sure if the rads and hormone therapy will be simultaneous or the rads go first. I agree that there seems to be a tendency to steamroll. I too would like a open and honest discussion. These options are important and difficult.

I am still mulling the tamoxifen. I just came across two interesting discussions. All sort of scary. It is always a question of risk vs benefit. I would prefer to take no pills! I notice that other boards have more discussion on this topic.

https://csn.cancer.org/node/181214

https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2014/06/tamoxifen-and-uterine-cancer


Dx 7/26/2021, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 8/6/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole-breast: Breast
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Oct 3, 2021 09:54PM jhl wrote:

Hi MacDebbie,

You appear to be an involved patient, know your own history and are willing to do some researching. Are you perhaps wanting to go into your appointment with a decision on what you will take or won't take? Or, are you willing to go into your appointment wanting to have a discussion on your own personal risk/benefits? I would challenge you that your physicians do not know of the long term side effects of these drugs. Their training gives them exquisite insight into not only what works but also what risks there are in each subset of population. Tamoxifen is not without its serious & life changing side effects and neither are AIs. However, the very best person to discuss these risks are with your own physician. None of us here can give advice on your specific history or worries. I was able to answer your question on dexamethasone since 1) I know drugs very very well and 2) I knew one dose of a steroid in a surgical setting is necessary & would not affect your diabetes in the long term. Your comment on AIs not being around very long is also incorrect. They have been in used since the late 1970's and have been studied since the 1960's. Fifty years of use have pretty well uncovered what extended long term estrogen deprivation will do to patients.

Debbie, please do not try to second guess your physicians. That does not mean you accept what they recommend blindly. Rather, go into your appointment with your notes and an open mind. Both tamoxifen and AI's are serious medications with serious side effects. Have a DISCUSSION with your physician. Bring up all your worries & fears. All of that is welcome in an MO's office. Let your MO help you sort out what you read in a study and put it in perspective in the context of your own medical history. There is no one answer for anyone.

I wish you the very best. Stay well,

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 3, 2021 10:31PM ThreeTree wrote:

When I spoke to my oncologist about side effects I was having from Letrozole, and my fears of cardiac problems that I'd read could happen, she told me there were no cardiac problems. I told her it was on the standard lists of side effects that we see on the internet, and I believe also in the package insert that came with my prescription. She then said, "Well they couldn't be real bad, not anything that your PCP couldn't deal with." She did not know about the cardiac side effects and it was obvious.

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Oct 4, 2021 07:02AM - edited Oct 4, 2021 07:38AM by macdebbie

Hi jul (Jane). Thanks for responding to my post.

Yes, I am a very involved patient. An endocrinologist who was an excellent doctor, extremely smart, said to me once "No one cares about your health more than you do". I looked at him funny, as I was raised to never question authority, and he repeated it again. He told me never to forget that, because it's true. Not that doctors don't try to do their best for each patient, not that they don't care. But they do not care as much as you do about your own life and your quality of life.

Years ago we had a very sick kitty. Our vet referred us to a well-regarded animal hospital where we met with a doctor who had a great deal of experience. He formulated a plan, which we ran by our regular vet. He took one look at it and said - scientifically this makes sense, but for your kitty, it does not. It's way too aggressive for her and would do more harm with side effects than good. He looked at the whole of her, not just the studies that these meds would work. We ended up going back to the animal hospital and talking to the specialist, and he admitted that it was science that propelled him to formulate the plan, and our vet was right. At 18 yrs of age, with other health conditions, the plan WAS too aggressive.

I will share one more story. We suddenly lost our beloved dog in March of this year. She was taken to our regular vet for itching, and given a steroid shot. She was no better a week later, so went back and saw another vet in that practice. I sent a note along with a recap of the prior visit, reminding her that Abby had been given a steroid shot a week prior, just in case she failed to look at the history and notes. She put Abby on Cytopoint, antibiotics and an NSAID (Rimadyl). Had I been on my game, I would have researched these meds before I gave them to her. But I was busy starting my business, and didn't do what I usually do. So I blindly trusted what the vet prescribed. Unbeknownst to me, steroid and NSAIDs should never be given together or near each other in time. Our dog suffered a perforated intestine, sepsis, went into septic shock, required ER surgery, made it through the next day at we got a phone call at 1:30am that she had gone into cardiac arrest (most likely from the meds they were using to get her BP up) and died. Alone. We never got to say goodbye.

After Abby died, I called our vet (the one who treated her most often and who had given her the steroid shot) and told him she had passed away and that the 6 vets who had treated Abby had mentioned the steroid/NSAID combo as a contributing, if not the single cause factor. His response was "I give that all the time together". He is not a "bad" vet, he just is not as cautious with potential serious side effects as he should be.

This is deeply personal to every one of us, but if I am "saved" from a breast cancer recurrence, new occurrence by hormone therapy, but I die of a heart attack as a result of the medication that "saved" me from the recurrence, I don't consider that a good trade-off. Obviously I am aware that no drug is perfect, and each have very serious side effects. I just need to make sure that any MO considers MY risk factors seriously and treats me accordingly. If my individual risk of recurrence is 2%, but there is an 85% risk of a potential fatal cardiovascular event is that a good trade off if the hormone therapy only cuts that risk by 50% down to a 1% chance of recurrence? Obviously, MOs want to help the patient, they don't want ANY recurrence. But at what cost? Those are reasonable questions to ask of a doctor.

So that is why I am an involved patient. I have have had numerous instances of doctors not being careful, dismissing my medical history, downplaying the serious side effects of meds, ignoring me when I tell them I am extra sensitive to meds, and it has landed me in the ER multiple times.

So that is why I am "involved" and research, and ask questions. I know that no one on this board is me, but it's helpful to have knowledge from people in the same situation, just as it would have been helpful for me to have knowledge that steroids and NSAIDs can be a very dangerous, even deadly combination before I gave the prescribed NSAID to me dog. Yes, that's common veterinary medicine knowledge, but as a vet tech friend told me, vets make mistakes, they are busy, they miss things. Had I been on my usual "dog boards" I might have seen something like that, or I could have been warned if I had inquired.

So I will research so that I am educated and can ask the right questions. I will continue to ask questions of other people. I will listen and confer. I will respect the doctor's experience, but I will not be dismissed or steamrolled. If I have chosen the right oncologist, together, we will come up with a plan that takes everything into account - benefit of hormonal therapy, serious side effects of each, how my complicated medical history plays into the risk/benefit analysis. And I will visit with my cardiologist and my nephrologist and endocrinologist so that they can weight in. At the end of the day it's my decision, because it is my life, not the doctors.

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 4, 2021 10:56AM jhl wrote:

Debbie,

After reading about your pets I know you will make the right decision for you. You have lots of physicians on your side. When you go armed with your research, you'll be able to have those conversations that are so important in making the decision. You are correct this is an important choice which is made more difficult with your complex medical history. Keep us posted if you can.

Be well,

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 4, 2021 01:17PM - edited Oct 4, 2021 01:18PM by muska

@ ThreeTree

Here's a link to a study summary that compares side effects of tamoxifen and AIs. I only checked the paragraph about cardio toxicity. They found only a very slight elevation in patients on AIs compared to the patients on tamox and most importantly, no elevation compared to placebo group. In other words, they saw no difference in frequency of cardiac complications in p on AIs vs those who don't take AIs or tamoxifen. How could this be? Probably because tamoxifen might have a slight protective cardiac effects. In any case, these are such small numbers that an average patent should not draw any conclusions from it.

https://www.uptodate.com/contents/managing-the-side-effects-of-tamoxifen-and-aromatase-inhibitors/abstract/33

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Dx 6/13/2013, LCIS, Both breasts Surgery 6/13/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 7/25/2013 AC + T (Taxol) Surgery 2/20/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/12/2014 Arimidex (anastrozole) Radiation Therapy 3/23/2014 Breast, Lymph nodes, Bone
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Oct 4, 2021 03:54PM ThreeTree wrote:

Thank you, Muska. I'll take a look.

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Oct 4, 2021 05:05PM - edited Oct 4, 2021 05:38PM by PamEP

I continue to research this topic. Dr. David A. Margileth, very experienced LA oncologist, has posted Youtube videos on both tamoxifen and aromatase inhibitors. He states that BC prevention drugs should be "incredibly easy, very nontoxic, shouldn't interfere with your life, shouldn't make you worry about long-term toxicity, and be cheap." How not to disagree? Anyway, he also says that the toxicities of tamoxifen for endometrial cancer, DVT, and pulmonary thrombosis increase with age and, while rare, can be life-threatening. No mention of cardio or cataract problems in this video. He says the problem with the AI's is noncompliance due to their SE's and bone loss.

Any new adjuvant therapy for ER+ BC under research study, 'cause these two options are not attractive.

Tamoxifen: https://www.youtube.com/watch?v=b2eaMhHVZHU

AI's: https://duckduckgo.com/?q=aromatase+inhibitors&t=brave&iar=videos&iax=videos&ia=videos&iai=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DpHrNatBNWt8&pn=1

Other of his videos: https://duckduckgo.com/?q=Dr.+David+A.+Margileth&t=brave&iax=videos&ia=videos&iai=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3Db1qy0EYppHA&pn=1

Dx 7/26/2021, DCIS/IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 8/6/2021 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole-breast: Breast

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