How many times do I have to try and decline hormone therapy.

Have you tried tamoxifen? It's not without side effects (no medication is), but it's not an AI.

The real answer to your question is zero. Barring exceptional factors (comorbidities, very advanced age, etc) doctors pretty much have to recommend it since it is standard of care, and they need to document that you were informed and decided to decline. In your case it seems you have had multiple BCs or a recurrence, so doctors are even more likely to be cautious. But you do not have to try it even once.

Beyond AIs and tamoxifen, there is toremifene, which is a SERM in the class of tamoxifen that I am taking that can have a better side effects profile for people who struggled with tamoxifen. But the truth is it can have side effects as well.

There is some evidence that lower recurrence is associated with things like maintaining lower body weight, high dose melatonin, exercise, 13 hour intermittent fasting, etc. None of this evidence is as strong as the evidence for the medicines, but they are worth considering if they are compatible with your quality of life. Especially exercise has so many other benefits that even if it does nothing for BC risk, it'll probably make your life better. But no ethical doctor would recommend them instead of traditional medicines (except of course under exceptional circumstances).

In the end, you have to decide for you. The best you can hope for is a doctor who truly listens to your concerns, openly shares their understanding of the best and most current research, and is supportive to you thinking through your own personal risk/benefit analysis. If you don't have that kind of collaborative relationship with your doctor, it can be worth it to look for someone else.

After a lot of research and personal introspect, I decided not to pursue hormonal therapy. Its a very personal decision I know. I understand that hormone therapy is the "standard" of practice but don't believe that it is one size fits all. I had the Onco test done and my result was a 17. The recurrence risk WITH hormonal therapy showed 5%. At a recent visit to the oncologist I asked what it would be w/o the hormones and she said 7-8%. I can live with that and feel that the potential side effects like stroke, blood clots and bone issues are more risky than the pills. I also have a strong family history of heart disease so that is a factor too. I also feel like the healthy lifestyle is a better personal choice for me.

BTW - I did follow through with radiation treatments which really scared me because I had left-sided breast cancer. I know that I already have "some" risk associated with that and am just not willing to add any more.

My oncologist did not try to force me to take the pills. She understands that this is a personal decision.

I wish you much luck in your decision. God bless.

Dx 6/15/2021, IDC, Left, <1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2-

pabbie,

From your signature line it looks like you've had 4 diagnoses. Have all been on the right side (1 primary and 3 recurrences) or have you had primaries on both sides? If I'm reading correctly, you've had a recurrence after having a mastectomy?

I think the challenge for you is that you have breast tissue that seems to really want to develop breast cancer. I would suspect that your history, with that number of diagnoses, would put you at higher risk of another recurrence - but I don't know that. What does your MO say?

Have you tried both sterodial and non-steroidal AIs? The side effects might be different for you.

starbaby, I agree that this is a personal decision that everyone needs to make based on their risk level from their diagnosis, and their level of risk tolerance. We can never eliminate our risk completely so the question becomes, how much risk reduction do I get from these meds and what level of risk can I live with? The difference in pabbie's situation versus your's and mine is the number of times that she has been diagnosed. Her breast cancer is stubborn and persistent, which likely puts her in a different risk category that those of us diagnosed with a small node-negative not overly aggressive (grade 2) breast cancer, like you and me. Plus she's had positive nodes with one of her diagnoses. All that combined means that pabbie's risk is likely considerably greater if she were to walk away from AIs.

pabbie, I'm sorry to hear that you have such trouble with AIs. Can I ask if you have tried all three of them? I know some women have horrible side effects from one and tolerate another just fine. You said that you had been on 1/2 a tab of tamoxifen for 5 years previously. Did you have side effects from that as well?

Just so I might be able to offer better guidance, did you ever have chemotherapy or radiation? Were your margins clear on your lumpectomy, mastectomy and subsequent resections?

You might look and see if there are any trials of new medications. I know there was a trial of a tamoxifen cream to be applied to the breasts. You wouldn't have met the study criteria, but who knows if there is some availability for off label compassionate use.

In the end, it is your decision to take the medication or not, knowing that you are definitely at risk for a recurrence given your history.

Starbaby1

I just read your post and I feel exactly the same way, I had my mastectomy of my left breast in July and my Oncotype score was low as well (9) when I asked the oncologist what it meant she said that's if you take the treatment if not double it so 18 with no medication 6% recurrence. I tried the Letrozole for 5weeks and it was awful after 3 days off I feel myself. There is no way I can do that for 5 years. All the other damage these drugs do to you, the possibility cancer can return is with or without these medications, they do not know... I hope you are doing well and I am doing the same, they don't recommend it. I am going to feel good enjoy my family and leave it in Gods hands.