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

@windyshores , Thank you

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.

Any study of recurrence at 5=10 years is missing the point about rising risk for, say, years 10-15.

All we have is genomic tests at the moment. If they say risk is, like mine, 12% without meds and 6% with meds, and my pathology was relatively scary, I don't think that is far off from the average of 1 in 49. It is more about your chances of being that one!

I think forums tend to the negative and more people who have bad side effects tend to post. So I am glad there is balance in this forum with some, including me, posting more positive experiences.

Protocols change and we need to keep up. Breast Cancer Index is now in the NCCN guidelines. I had the Breast Cancer Index at year 5 of Femara and it told me there was no benefit in continuing meds in years 5-10. Desepite very high ER and PR scores of 95%. Oncotype is used for years 1-5. Many women are continuing meds after 5 years with no benefit. From the site:

"Nearly 95% Of Women With Early-Stage, Hormone Receptor–Positive (HR+) Breast Cancer Do Not Benefit From Extended Endocrine Therapy"

However, my risk was 5.7% for recurrence and was labelled at the time as "high." You can have high risk, no benefit, low risk, positive benefit, high risk, positive benefit and low risk, no benefit.
https://www.breastcancerindex.com/resources-providers?gclid=265aff4aaa6b1c1dac6d9d9e2aff082b&gclsrc=3p.ds&msclkid=265aff4aaa6b1c1dac6d9d9e2aff082b&utm_source=bing&utm_medium=cpc&utm_campaign=Biotheranostics_BCI_HCP&utm_term=Breast%20Cancer%20Index&utm_content=hcp_breast%20cancer

Yes 9 years!!! Next year I am done! My oncologist mentioned a new pill that is being used in trials right now. To be used after My AI is done. I will look into that as well.
Horrible way to live always in fear of it returning. 🥲

ty...
I had low grade adeno squamous metaplastic carcinoma lumpectomy surgery in 2020 followed by 4 weeks of radiation therapy. The tumor was estrogen positive. The AI medication made me feel sick and I have had a spinal compression fracture from osteoporosis so I decided not to take it. I was 75 years old at the time and did not want to spend what could be the last 5 years of my life feeling ill. If I had been younger my decision could have been much different. We all have to make the decision based on our personal circumstances and health conditions. So far I have made it 2 1/2 years without cancer.
Katrina

It most definitely is one’s own decision but it is a fact that these drugs/chemo/radiation DO SAVE LIVES.
If it saves just one life it works… that one life can be yours!
No one here is a doctor and no one should give medical advice… as far as citing certain research and doctors opinions…Their are always two sides
to every medical claim!! We also know there a good doctors and not so good doctors… some doctors are up on latest new meds and treatments… others are not.
There are so many women who go off these meds who do have recurrences… that’s also a fact. Many not here to talk about it. Sadly.
Again… one’s own decision but please dont say these treatments dont work and there is no proof.
♥️

I agree 100%… to much negativity around these meds . That’s exactly why I posted that I have been on 9 years and all I had were hot flashes… I hope that gives hope to those women struggling…
In a perfect world I would wish I didn’t need meds … but this world isn’t perfect! For me… hot flashes or sore bones is worth the risk of cancer NOT coming back. My choice, the right choice for me. I know I did all I could…

Sorry to hear that these didn’t work for you. I had a totally different reaction… they are working for me and for many others. There most definitely is soooo much proof out there that these drugs save lives. Please research or ask your oncologist. Best of luck to you♥️

I haven't seen anyone post that the anti-hormone meds don't work on these threads. There is however considerable debate, within the oncology community, as to how well they work, but that a different issue.

Everyone is free to do her own due diligence, including getting opinions from several specialists and basing a decision on whatever parameters apply personally. I just don't think peer pressure of any sort, pro or con, is appropriate. Sometimes it feels as even a mention of side effects is construed as a negative comment and that is an imbalance too. And intrinsically unfair to people who are unable to take the drugs but feel silenced or unsupported.

"Any study of recurrence at 5=10 years is missing the point about rising risk for, say, years 10-15."

In a sense, that's my point. Is the cancer treatment going to become 'drugs for life' at some point? And how many women taking those drugs would have had a recurrence if they'd not taken them? agree we don't know if were among the lucky 48 or are the unlucky 1 in 49.

Hopefully genetic understanding will be the deciding variable, separating those who are clearly at great risk and need a lifetime of proactive preventative treatment and those who are not at such risk. I am very glad that my oncologist suggested doing the testing!