Is there anyone that had estrogen positive cancer, without use of AI?

@karin5 I had severe osteoporosis and still went on an AI if that is reassuring. Tymlos has restored my bone density and quality, better than they were before cancer.

Hi - thank you for your reassuring response. It truly helps in my case. I looked up Tymlos and will ask my oncologist when I see him sept. 22. He will start me on Herceptin and probably a bone building drug. Do not like biophosphonates.
Again thank you and truly wish you all the best.🤗

If they want Reclast, ask about a test dose of 20% (1mg). Hydrate well and ask for a slow infusion. Then three months later you can have another infusion at a dose you choose. At least that is the protocol my doc is using to lock in my gains from Tymlos.

Jusst to clarify: I did Tymlos 6 years after my diagnosis. My bones did get worse on letrozole. I would have done Reclast, which may also have preventive effects with cancer, but my doc did not want to prescribe due to afib.

If they want Reclast, ask about a test dose of 20% (1mg). Hydrate well and ask for a slow infusion. Then three months later you can have another infusion at a dose you choose. At least that is the protocol my doc is using to lock in my gains from Tymlos.

Jusst to clarify: I did Tymlos 6 years after my diagnosis. My bones did get worse on letrozole. I would have done Reclast, which may also have preventive effects with cancer, but my doc did not want to prescribe due to afib.

I have been on Letrozole since Feb 2023 and hanging in (57 yrs, ILC, Lumpectomy, Radiation) and osteopenia has worsened. I see my oncologist in Oct and thinking unless osteoporosis no meds to help bones will be prescribe. I'm fearful of impact on jaw etc but perhaps Tymlos is different.?

That is awesome 👏. I have had lumpectomy, chemo and radiation this past year .Still getting Herceptin every 3 weeks no problems. I am going on my 3 rd estrogen blocker pill I can’t take the pain . I am Her 2 + .
My mammogram this past month showed nothing suspicious 🙏👏. I know I need to take this pill for 5 years but really can’t take the joint pain.
I was happy to to read your sister did well.

A lot of people have cancer once and never again. Including breast cancer. If this were not true, everyone who ever got breast cancer would be doomed to continue to get breast cancer, ad infinitum, or take drugs and/or radiation and/or chemo until death. And Ive found no statistics anywhere that document that. And I have certainly looked.

A noted oncologist in an article in the New England Journal of Medicine cited the NTT ('need to treat') statistic for anti-hormone therapy as 49. That means that 49 women must take anti-hormone therapy in order to possibly prevent 1 statistically-predictable likely recurrence. That means that 48 women who wouldn't have had a recurrence anyway are, to use his words, 'told to take toxic drugs' that did them no good at all. I found the observation fascinating because it suggests that anti-hormone drugs prevent 1 case in 49, which is about 2.2% not the often quoted 'about 50%' of cases that some cite. The oncologist's point was that doctors are downplaying the toxicity of the drugs in an effort to encourage compliance and that that's a violation of medical ethics and the Hippocratic Oath. [I will try to find the exact article and post the link to it.]

There is no plain vanilla breast cancer as few of us have identical health, immune system, lifestyle and genetics. But 50% of the woman who start anti-hormone drugs discontinue them within the first two years. This is known as the 'non-compliance' problem in the breast cancer medical world due to drugs' side effects. The actual non-compliance rate is higher because this statistic doesn't include the women who never even start taking the drugs. [I've cited three studies on anti-hormone non-compliance, with URL links, elsewhere in Mayo Connect.]

I've never found any study that showed that 100% of the say, 60%, of women with estrogen-positive breast cancer who initially declined or discontinued anti-hormone drugs had breast cancer recur. I did read a study where Kaiser Permante was able to track the discontinuance of anti-hormone drugs because the patients filled, or stopped filling, their prescriptions through Kaiser Permanente but remained KP clients. At 5-10 years after initial cancer treatment, 85% of the women who'd declined or discontinued the drugs had not had a recurrence of breast cancer. They also found a smaller number of women who filled the prescriptions but didn't take the drugs anyway. (The speculation was that the women were reluctant to 'confess' such to their doctors.)

For those who cannot take the anti-hormones or tamoxifen for whatever reason(s), I hope they don't feel doomed to breast cancer recur because the statistics don't show that. Granted, for those who can take the drugs without unduly complicating other health issues or conflicting with other, life-saving drugs, it's an easy decision whether to include them. But there are zero guarantees with breast, and other, cancers. One person can take all of the drugs and chemo and radiation suggested and still not remain cancer-free. And another can decline some or all of the recommendations and live cancer-free to die of something else. The only absolute so far is the death part for which there is no cure yet.

I suspect that women who decline the drugs are either unlikely to post that decision or aren't well-represented here as they've made a decision about cancer treatment and are less likely to continue to read about the pros and cons. To be fair the same thing could equally apply to the women who take the drugs, have no issues with them, and no longer participate in breast cancer discussions.

I consulted with two oncologists before making my decision. I would have consulted with a third if they'd not agreed. I hope that people do whatever they need to do to feel confidence in their treatment decisions and move forward with a sense of doing the best they can in the moment. The breast cancer rate is a national shame that we didn't cause and can only hope is reversed in time.