AIs - trading one problem for another
Please let me know if I am understanding this correctly. I am at low risk for recurrence. 7% risk of recurrence in 10 years with AIs, and 14% without. That means I have an 86% chance of NOT having a recurrence without AIs. If this means that out of 100 women, 86 will NOT have a recurrence without AIs, then 86 women will have taken a drug that has numerous and sometimes dangerous adverse effects for nothing. I realize that no one can predict who will be the ones without recurrence, but I will gladly take my chance. I do not want to feel miserable every day for 5 years or cause harm to my heart for something that may never happen. I don't understand the cookie cutter approach. Why is everyone prescribed AIs no matter what their risk factor is? It makes no sense.
One cannot say "it can't hurt to take them". Yes it can.
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First of all, full disclosure: I declined AIs for a variety of reasons, the major one being that estrogen is protective for a precancerous condition of my esophagus. My MO still recommended them but understood my rationale for not trying them. I'm comfortable with a slightly higher risk than yours (12% / 24%.)
Oncologists always recommend AIs to their ER+ patients since they cut the risk of recurrence over 10 years approximately in half. Their job is keeping their patients alive and as healthy as possible. There are always exceptions to good medical practice. While a flu shot benefits most people there are some out there who are allergic to flu shots and do not get them.
The benefit of AIs varies a great deal depending on how likely recurrence is without them. If someone has a 4% chance of recurence without and a 2% chance of recurrence with there is a very small benefit. If someone with stage IIIc has a 40% chance of recurrence without and a 20% chance of recurrence taking AIs there is a large benefit.
Of course, all this is statistical and can't predict what will happen to any individual. Everybody has different risk tolerances so each individual needs to make a decision that they are comfortable with. Some individuals tolerate AIs well or find a different AI that works for them if the first one they are prescribed causes problems. Other people have terrible side effects on all three and decide to discontinue them. Some people never start AIs because of a medical condition which could be made worse by them.
Every individual is in a unique situation and needs to choose the treament they feel will benefit them the most. I wouldn't criticize anyone's choices because I am not that person in that situation. If I do have a distant recurrence I will take AIs then and won't blame myself for my decision. I hope things go well for you.
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I am on one of the AI's letrozole. I had ER+/PR-/HER+/Brca2.
I was on Perjeta/Herceptin infusions and a drug called Lynparza. I have not had super crazy side effects. When i finished those 3 drugs in June of 2023, I found they were my primary source of any joint pain i had. So far after 27 months I am tolerating the Letrozole/Femara. For me, estrogen fuels my cancer cells. I look at the overall % this will help and i think for me, it is worth it. If I start having rotten side effects, I will look at it again.
Lynparza likely and another genetic mutation got me to have MDS. I had a bone marrow transplant in April of 2024. I was in a research study to prevent graft vs host disease and 132 days after transplant, I am still good. OUT BODIES ARE DIFFERENT. It is crazy how some people are so affected.
AI's are your choice. They can hurt you. I have met women all three and they quit all. There is something new out there. I heard about it in the zoom meetings. Do a search on this site for new AI treatments. You never know!!
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I am struggling with this issue. My oncotype was 6 with a 3% chance of recurrence. I am post menopausal but for a variety of reasons myMO suggested tamoxifen. I will ask her my risk of recurrence without tamoxifen on my next visit but I suspect it will be in the range of 1 to 1 1\2 %. That being said I have committed to TRY it but if I have to take more medication to deal with side effects or it makes me uncomfortable I will likely stop. I struggle with this even before I start. I understand that this is where medicine is right now but I certainly hope they are working on a better medication that does not have such significant side effects or learn which people will actually benefit from it.
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That is a pretty low risk of recurrence. The problem with adverse effects is that a lot of the time, they are silent. Even if you feel ok, the lack of estrogen is causing harm to other areas of your body. By the time you feel effects, as in the case of heart damage, it is too late. A friend of mine who had been on AIs just had surgery to have her heart valve replaced. The surgery failed and she had to have another. It has been one issue after another with her heart.
The doctors are not up front with everything that can go wrong on AIs. They are laser focused on suppressing estrogen to prevent recurrence. And they often dismiss adverse effects attributing them to something else. And very importantly, adverse effects are GREATLY underreported. Doctors do not report them - the onus is on the patient. And just how many times do patients report their side effects to the FDA? Hardly ever. That is why some adverse effects are considered rare, when in fact, they are under reported.
We all have to make our own decisions about taking AIs. Mine is a firm NO.
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Hi @ismacurler. Welcome here! It’s not fun needing to be here, but it’s a helpful place. I find it’s so nice to hear how others have thought through their decisions and to hear how it’s going for them. It has helped me digest things anyway. But the decisions … sigh … they are difficult!
My Oncotype was 16, my lymph nodes were clear, I’m premenopausal and if I take Tamoxifen, my risk is 5% at 9 years, something like 9-10% if I were to take nothing. I’d prefer having no such thing as a cancer recurrence risk, but I’m gradually adjusting to this being my reality. I realize I’m in the low risk category and I’m so grateful for that. But I’m not comfortable with doing nothing at this time. I had something called LVI - lymphovascular invasion … that has added to my concern even though the oncologist said the prediction tests don’t even factor that in. Still. It would have been nicer if I didn’t have it.
I didn’t really have a lot of mental bandwidth after my mastectomy to research Tamoxifen fully and make a careful decision so I felt like I could accept my MO’s recommendation for the time being and start it, see how it goes, how I feel and work on doing my research and try to make a more careful decision in time. She explained the potential serious side effects and I was willing to accept them to cut my risk in half. I’m still taking it and although I’m having some bothersome side effects, so far it’s not been enough to quit. I feel like the potential benefits outweigh the potential risks, for me, for the moment. That has been my reasoning, for what it’s worth.
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It can hurt to take them but it won't necessarily hurt to take them.
I have friends who don't experience any side effects.
I was premenopausal and had a new primary while on toremifene (sister drug to tamoxifen). It was a lot less stressful the second time around but it still was terrible, and I would rather not go through even another incidence of 1st stage cancer, let alone metastasis.
After that, my doctor recommended OS+AI.
In my case it does hurt. I definitely feel impacts of menopause and estrogen depletion, and that's in the short term. For the long term - too much is unknown. My actual risk of recurrence, new tech and drugs that may develop along the way, new side effects that may be discovered or new mitigation for side effects that may be discovered - I can't know from here. So I'm focusing on the short to medium term.
If I can tolerate these drugs and still enjoy my life for now, that helps me be in a place where I can live in the present and worry about the future later.
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