How Did You Decide to Take/Not Take Hormone Blocker if Low Risk?

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macdebbie
macdebbie Member Posts: 171

My tumor was small, 3mm with no lymph node involvement. I had a lumpectomy with very clean margins and 16 rounds of whole breast radiation. The radiologist told me the "boost" of 5 additional doses to the tumor bed was not warranted. Luckily I did not have to have chemo.

My BCS told me that due to my genetic report (no mutations) that the risk of a NEW breast cancer (occurrence) was 1% per year.

I've run Predict, LifeMath, and the Tufts model etc. since my tumor was too small to qualify for Oncotype, to get a general idea of my absolute risk of recurrence and the benefit of hormone therapy. The models all show a benefit of less than 1% by adding hormone therapy.

NCCN Guidelines state to "Consider" Endocrine Therapy. My MO wants me to try it but is respectful of whatever choice I make.

I asked my MO about the calculations from the models and he said those are just algorithms and don't really apply, and when I pinned him down to give me a ballpark recurrence rate, he told me 5%.

So what I am grappling with is the benefit of a hormone blocker is @ 50% from what he said - so a risk reduction of 2.5%.

In looking at only the serious side effects, broken out by how common they are, and/or things that could be deadly and could happen quickly.

Very Common (>10%) for the AIs - Cardiovascular Disease, Other Cardiac Event (and to a lesser degree Hypertension which is a problem for me with a Hx of Hypertensive Crisis from Meds).

Common (1-10%) for the AIs - Cerebrovascular Accident, Cerebral Ischemia, Cerebral Infarct, Angina, Coronary Heart Disease, Myocardial Ischemia, Myocardial Infarction, Cardiac Failure, Stroke, Lympedema, TIA, Neoplasm, Secondary Malignancy/Other Primary Cancer.

Tamoxifen - DVT, Microvascular Thrombosis, Pulmonary Embolism, Stroke

This doesn't include the higher risk of Diabetes (I already have pre-diabetes) and High Cholesterol (which I am prone to but which is now normal due to hard work with diet/exercise) or the very real but not life-threatening issues of bone pain, anxiety, depression, etc.

I've pretty much ruled out the AIs since my Achilles heel is in the Cardio area, and because I have Osteoporosis and adding drugs like Zometa, etc. add another layer of potentially serious side effects.

I will obviously talk to my MO about this but just trying to see if how I am looking at this is appropriate. Studies I have read say to estimate the net effect of the intervention on the absolute risk of each of the relevant outcomes, one needs to know the relative risk of the intervention but also the absolute risk of the health outcome in absence of the intervention.

It seems that this is what I have done and it seems to show the risk outweighs the benefit. But I consider if I got a recurrence I would regret not taking anything, although I have read enough to know that recurrences happen even when people take these drugs. I also consider how I would feel if something devastating happened and/or I did irreparable permanent damage to my body for such a small risk reduction. Some of these things like the cardiac risks are long-term effects that can happen years down the road.

Any things I am not considering? I want to be prepared for an intelligent conversation with my MO. It's almost harder when you have a choice vs when it's clear cut.



Comments

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2021

    macdebbie, I'm copying this over, with a few edits, from an earlier post of mine in the 'Rejecting Hormone Therapy' thread. Endocrine therapy provides 3 separate and distinct risk reductions. These 3 risk reduction benefits are not additive but if you are evaluating the 'Pros vs. Cons' of endocrine therapy, you need to include each of these 3 separate risk reduction estimates in the 'Pros' column so that it's the overall benefit of endocrine therapy that you are considering, not just the risk reduction benefit specific to 1 of your 3 future risks.


    Endocrine therapy (Tamox or AIs) provides 3 benefits:

    1) They reduce the risk of a local (in the breast area) recurrence, generally by about 50%. For those who've had a MX, this risk may be as low as 1% but for those who've had a lumpectomy + rads, this risk is usually more in the range of 8%-12%. Grade, size of tumor, surgical margins will all affect this risk.

    2) They reduce the risk of a distant (i.e. metastatic) recurrence, generally by about 1/3rd. This is the risk that we all fear the most. AIs generally perform a bit better in this area; my MO said that AIs reduce risk by ~35% vs. ~30% for Tamox. For those who face a significant risk of mets, this small difference in efficacy can be important. For those who face a low risk of mets, the absolute difference between Tamox and an AI might net out to be less than a 1% reduction in risk.

    3) They reduce the risk of a new primary breast cancer; results vary based on the study but I believe on average the risk reduction is approximately 50%. For those who've had a BMX, the risk to develop a new breast cancer can be as low as 1%-2%. But for those who've had a lumpectomy, this risk can be significant. All of us who've been diagnosed with breast cancer are at higher risk (than the average woman) to be diagnosed with a new primary breast cancer. This second diagnosis might be a different type of breast cancer and it could be in either breast. A new diagnosis could come anytime during your life, although for all women our highest risk years are when we are in our 60s and 70s. My MO told me that my risk to develop BC again was about double that of the average woman my same age who'd never had breast cancer before; the following study seems to confirm that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720990/ . I was 49 at the time of my first diagnosis; the remaining lifetime risk for the average 49 year old is 11%, so my MO estimated my risk to be about 22%, although I had other factors that might have increased this risk. In addition to having a personal history of breast cancer, a family history of breast cancer, genetic mutations, and extreme breast density are some of the other factors that can drive this risk up. (And yup, I drew the short straw and was diagnosed a second time, 13 years after my first diagnosis.)

    For each of us, even if we have a similar diagnosis, our risks in these 3 categories may be different because of a lumpectomy vs. mastectomy, or having vs. not having a genetic mutation or a family history of breast cancer, or having very fatty vs. extremely dense breasts, etc..

    One additional point of clarification: Your Oncotype score, and the PREDICT and CancerMath models, provide an estimate ONLY for the second risk I mentioned, the risk of a metastatic recurrence. These models do not tell you anything about your risk of a local in-the-breast recurrence or your risk to be diagnosed with breast cancer again with a new unrelated primary breast cancer which could develop in either breast. Separately, the Tufts IBTR! nomogram provides an estimate ONLY for the first risk I mentioned, the risk of a local recurrence (with or without radiation).

  • macdebbie
    macdebbie Member Posts: 171
    edited December 2021

    This is excellent - thx so much!

  • kksmom3
    kksmom3 Member Posts: 183
    edited December 2021

    Macdebbie, I have the same stats as you, as far as tumor size, etc. I had 16 whole breast rads and 4 boosts.

    No Oncotype for me either. I was 61 when diagnosed. I am not sure of your age, but if you are younger, that would be a consideration. I've done 2.6 years on letrozole and my only SE is vaginal dryness which leads to a lot of UTI's. If you search under my name, I've written a lot about that SE, but I think it's finally under control. I've also gained weight, which sucks, but it's probably partially my fault. I'm always working on it.

    I took a 3 month break from the AI, as I just needed to physically and mentally. Now, I am trying to take it every other night, because I really think that's enough. My MO said if I got 3 years on this drug, she'd be happy.

    It's all a crapshoot and we are all different, with differing health needs. My RO told me I had a half of a percent a year chance of it coming back, MO said 3%. I've run the calculators too. There are no guarantees. I felt I should give it a go. Is it helping? Who knows. Please let us know what you decide to do.


  • Elfrida2022
    Elfrida2022 Member Posts: 3
    edited December 2021

    Some important side effects not mentioned are bone health, vaginitis, libido, nausea, bone and joint pain. I am going through the same agonizing about these. So many conflicting articles. One article read mentioned low dose Tamoxifen was as effective as the full dose. Another said if started then stopped it would increase the risk above what would have been if never tried. People talk about "trying" these things. If they are tried and stopped because of side effects will the side effects go away after stopping them?

    I am in my mid-seventies, active and very healthy, this is the first major health problem have ever experienced. Running one of the on-line Predict said suppression would increase my lifespan by 2 months.

  • PamEP
    PamEP Member Posts: 82
    edited December 2021

    macdebbie, I am taking tamoxifen mostly for the risk of a new cancer in the contralateral breast--reasoning RADS lessened the old tumor bed risk significantly to about 1.3% per the Tufts tool--and to change my systematic positive estrogen neighborhood environment (to borrow Dr. Love's way of looking at it) for any dormant BC cells that got around before my diagnosis. My risk levels are also generally low, but someone has to be in those figures and I'd rather it were not me. My tamox SEs are pretty easy so I think the benefit outweighs the risk, at least for now.


  • muska
    muska Member Posts: 1,195
    edited December 2021

    Hi Macdebbie,

    You wrote your risk of a new breast cancer as assessed by BCS is 1% per year. If I understand correctly that means in the absence of hormonal treatment your risk would be 10% ten years from now? How old are you and how much longer to you expect to live? What risk level of new breast cancer do you find acceptable? What about adding the risk of metastatic recurrence that would also increase from year to year?

    Where exactly did you get the list of side effects for AIs? Quite a few things there like neoplasms, other cancers, strokes etc. Just curious where the info about AIs causing secondary cancers for example comes from?

    As for how to make a decision about to take or not to take, that’s why we go to medical doctors vs relying on algorithms that are calculations based on some aggregate data we don’t know the source. I wonder why your MO recommended therapy in the first place, did(s)he explain?

    Good luck with your decision, it’s obviously not a critical one in your case.


  • Lizard123
    Lizard123 Member Posts: 22
    edited December 2021

    I hope my comment is not too off topic as I don’t want to highjack this thread. I have always been curious why the dosage is the same for all patients taking an AI. For example, I am on Armidex. The dosage is one mg. How is the dosage determined? I could need more or less or nine at all, because there is no test to determine how much I need personally. I have not come across any other prescription drugs that work that way.
    I wish there was a test to figure this out. I think some women suffer unnecessarily on these type of drugs. In my mind this drug is all or nothing. It either prevents a recurrence or it doesn’t. If AIs were more tailored to each patient, the results could be even better.

  • macdebbie
    macdebbie Member Posts: 171
    edited December 2021

    muska - I am not sure about the recurrence numbers, something I need to clarify with both my BCS and my MO. I unfortunately don't have the benefit of having an Oncotype score, so I can only go by what the docs say. My MO said 5% for a recurrence without endocrine therapy, 2.5% potentially with it. He did not talk about risk of METs separately but I see him at the end of Dec and will inquire.

    I am trying to weigh risk of the side effects, which are not insignificant, with the benefit of the endocrine therapy. And my docs certainly will guide me, but I ran the algorithms so that I could have an educated conversation with them as to the benefit/risk.

    I am 64. I'd be happy with another 15 years of good health. But none of us, no matter what we do, are guaranteed that. I will most likely go on the endocrine therapy, at least try it, as I do not want something to happen and then regret that I didn't. Quality of life is very important to me though, moreso than longevity.

    The side effects come from www.drugs.com - Side Effects, the "Professional" link which lists instances by category of frequency (very common, common, uncommon, rare, very rare, post marketing reports and frequency not reported). I also read through this white paper by the American Heart Association - https://www.ahajournals.org/doi/10.1161/CIRCULATIO...

    Thanks for your thoughts.

  • ceanna
    ceanna Member Posts: 5,270
    edited December 2021

    Macdebbie, maybe it would be helpful if you asked for a referral to a cardiologist who also knows cancer and medications. I had a similar diagnosis and treatment as you, but a genetic heart problem. I found a referral to a university hospital which had a specialist dealing with these issues combined and looks at your individual situation. It was still my decision, but I felt better knowing more details before making a decision. Like said, there's no guarantee, but we try to make the best informed choice we can at the time. All the best.

  • muska
    muska Member Posts: 1,195
    edited December 2021

    Hi Macdebbie, I checked the link to the study results you provided. They compared cardiovascular episodes between a group on AIs and another one on tamoxifen, not to the general population. The study authors admit the subject is controversial and further studies are needed. I did read more on this some time ago and other researchers speculated this could be due to tamoxifen having some beneficial effect on cardiovascular health. So if your concern is mostly about cardiovascular issues, you might discuss tamoxifen instead of AI with your oncologist. Additional bonus is, Tamox doesn't increase osteopenia.

    Best.

  • BCat40
    BCat40 Member Posts: 241
    edited December 2021

    I had posted this in another thread, but has a good discussion of evaluating the pros and cons of doing hormone suppression for early stage patients.

    https://ascopost.com/issues/november-25-2019/breas...


    "For women in their 30s, 40s, and even 50s who don't have any other serious illnesses, physicians need to be concerned about accelerated aging," Dr. Ganz continued. "If these patients are receiving very intensive therapy and endocrine treatment for a long period of time, it may be setting them up for some long-term effects, such as you see in children who have undergone cancer treatment," Dr. Ganz said.

    Dr. Ganz concluded with a call "to weigh the quality and quantity of survivorship related to breast cancer therapy." Among the important considerations are the long-term nature of recommended therapies, chronic symptoms that can interfere with quality of life, and the potential for competing causes of death, especially in women for whom the risk for breast cancer recurrence is very low.

    "I am completely in favor of treating everyone who needs therapy. I don't want to take away lifesaving therapy, but the right treatment for the right person has to be the long-term issue," she stressed.

  • Ibis
    Ibis Member Posts: 71
    edited December 2021

    Have any of your MOs recommended Raloxifene (Evista) after menopause? I've had 3 episodes of DCIS and 2 mastectomies with reconstruction. The 3rd episode of DCIS was in the nipple area and I and had surgery to remove it. My MO said she was of 2 minds regarding if I should take AIs. I don't plan to take AIs because of the bone thinning side effects and I already gave osteopenia. She also mentioned Ralxififene as a possibility and I will also ask my endocrinologist

  • BCat40
    BCat40 Member Posts: 241
    edited December 2021

    Ibis,

    Raloxifene is in the same category of drugs as Tamoxifen--Selective Estrogen Receptor Modulators. It should theoretically be less harsh than an AI. It is FDA approved for risk-reduction in post-menopausal high risk women who have not yet had invasive breast cancer. It also has a slightly different SE profile than Tamoxifen--i.e. no risk of endometrial thickening or eye problems (cataracts). It's probably worth a try; you could always discontinue if you hate it.

  • PamEP
    PamEP Member Posts: 82
    edited December 2021

    Thank you, Ibis, for bringing this up. Raloxifene (Evista) is only approved by the FDA for prevention, not for IDC breast cancer survivors. The recurrence rates may be lesser than tamoxifen, but the side effects do not include endometrial/uterine cancer. Can someone fill me in on why Raloxifene has been pushed aside? One of the developers of tamoxifen presents it positively as an alternative to tamox without the uterine agonist response for post-menopausal women. As a woman with osteopenia, I have chosen tamoxifen over an AI (plus other considerations) but worry about endometrial disorders.

  • BCat40
    BCat40 Member Posts: 241
    edited December 2021

    Pam, my understanding on why it has been pushed aside is because it shows efficacy, but lower efficacy than Tamox so they won't give it to invasive cancer survivors. They just stopped doing studies on it when Tamox was shown as more effective. I couldn't tolerate another SERM and asked to try Raloxifene. My first MO refused to prescribe it to me off-label. Another MO said he thought it was fine for me to try it if I wasn't going to take the other meds. Unfortunately it did not work out for me either, but I did try it. You may have to "shop around" to find an open-minded MO.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2021

    BCat40, yes, I think you are right. Raloxifene is less effective at reducing invasive cancer risk in high risk patients (approx. 38% risk reduction from Raloxifene vs. 50% from Tamoxifen) so logically it makes sense that it would not be recommended to patients who have already had invasive cancer and therefore need a med that can reduce the risk of invasive cancer metastasis.

    This is not dissimilar to Tamoxifen vs. AIs. Although these meds are considered to be somewhat interchangeable, AIs are known to be more effective at reducing the risk of mets (approximately 35% effectiveness for AIs vs. 30% for Tamoxifen). For this reason, most MOs opt for AIs as a first choice for post-menopausal women. And younger women are often given the choice of ovarian suppression + an AI. For someone with a low risk of mets, this 5% difference between Tamoxifen and the AIs doesn't translate to be a big difference in absolute risk reduction, but for someone who faces a more significant risk of mets, the benefit from the AI is greater.

    So, given that Tamoxifen is known to be less effective than the AIs at reducing the risk of mets, it seems illogical to put forward another drug that has been found to be only "76 percent as effective as tamoxifen in reducing risk for invasive breast cancer".

    The Study of Tamoxifen and Raloxifene (STAR): Questions and Answers https://www.cancer.gov/types/breast/research/star-...


    Of course that doesn't meant that Raloxifene might not be a good off-label alternative for someone who can't take AIs and has concerns about some of the Tamoxifen side effects which are lower risk with Raloxifene.

  • BCat40
    BCat40 Member Posts: 241
    edited December 2021

    Always informative, Beesie. :)

  • Ibis
    Ibis Member Posts: 71
    edited December 2021

    Thank you for all the information and statistics on Raloxifene.

  • muska
    muska Member Posts: 1,195
    edited December 2021

    Speaking of Dr. Ganz Bcat40 quoted above:

    I didn't see a single clear criterium or approach suggested. Is she saying anywhere HOW to avoid or limit unnecessary treatments and improve survivors QOL? In the absence of any clear recommendations it's just another example of advice that has little if any applicability in real life situations and clinical practice.

  • BCat40
    BCat40 Member Posts: 241
    edited December 2021

    Muska, the article is presenting the results of their research and they are basically saying, don't give these meds out like candy reflexively to any early stage ER+ patient. There are currently clinical and genomic testing criteria for sorting patients' risk levels.

  • Racheldog
    Racheldog Member Posts: 227
    edited December 2021

    My biggest fear about starting these AI drugs are two fold:

    1) the cardiovascular risk and taking these long term, even 5 years for older people or any patient who has a family history of cardiovascular disease. I do.

    2) these drugs can cause retinal traction. I have had retinal issues (PVD's common to all of us and retinal tears for me). Still followed by a retinal group and with my retinal tears so far I was lucky enough to have laser photocoagulaion to seal up the tears and not surgery. Still have plenty of floaters. My retinal doc has made my follow ups in shorter time for check ups-especially if I go on these. There is a concern on these drugs of eye issues. It is known and documented that Tamoxifen causes more maculopathy than the AI drugs but still.......AI's worry me.

    3) Being single, if I experience a detachment is is sure not going to be the MO to come over and pick me up to head to the ER or to the Retinal office. I am and have been a strong , independent person but I am weighing all the risks as we all need to do before going on these toxic (IMO) drugs.

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