I don't find this news sad or depressing, but that's because I'm tolerating my AI well. MO had pretty much said she would recommend 10 years for me anyways. This study will just confirm her initial thoughts on the matter.

Now, if I hated my AI, I would probably feel differently.....

Maybe I should have clarified--it is great that there are methods to increase distance from recurrence, but the toll it takes on the body is just not known yet...bones, brains, heart....which is why I said "depressing" because it is unfortunate that we need to make these choices as they are. Of course, we all want the cure and I'm mad there isn't one yet. Bad enough to lose breasts, never mind the other stuff. Sigh.

For those interested in reading more, here are links to the New England Journal of Medicine (NEJM) publication and some commentary:

NEJM: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1604700

ASCO Post: http://www.ascopost.com/News/41622

To see read about initial takes from various oncologists, see this MedScape article:

MedScape: http://www.medscape.com/viewarticle/864445

If you receive a registration page, google the title of the article to access without registration: "What Will You Tell Breast Cancer Patients About MA-17R?"

BarredOwl

I think that in another 5 years they're going to extend the recommendation to 15 years and that it's ultimately going to be a lifetime recommendation- treated like a chronic illness rather than cure. My hope is that they develop therapies that are better for the QOL. I take tamoxifen and am handling the side effects pretty well mainly because of supplements to counter them. But one reason I don't push to take an AI yet (I'm 51) is the potential side effects although I know the AI is a little more effective. But most likely I will be starting it probably in 2 years when my first five years of Tamox are up.

http://www.medscape.com/viewarticle/864445

This discussion is really interesting to me given my ONC said I won't be taking Tamoxifen when my 5 years is up in August. She said I have dodged a possible SE of a blood clot so there was no reason to tempt fate. Throw in the fact I have IDC, Stage 1a, Grade 1 and an Oncotyoe score of 11. I had s lumpectomy and 33 Rads treatments. My tumor was small and non-aggressive.

Apparently there is a new test that doctors are using to determine whether you need to continue on for an additional 5 years. A friend had this test and her score was high so she will be on Arimidex for 5 more years.

I have had minimal side effects from Tamoxifen. If my ONC had decided I need to keep taking it I would have been okay with that.

Diane

From a metastatic perspective, I would have wished for an overall survival benefit after extended AI therapy. As it turned out, placebo proved better than letrozole with this end-point. Or am I reading that wrong? 5 years is better than 10 years for overall survival??? Really, don't bother is right. Maybe intermittent therapy is worth trying? That or extended tamoxifen therapy which seems to have done better for overall survival than 5 years of tamoxifen.

so it reduces the risk of contralateral BC but does not increase overall survival (so does not decrease the risk of distant recurrence)? I've had a bmx so is there any point to continuing 5 years - from what I read a 1% advantage???

This was posted on the other thread about continuing an AI for 10 years. It's interesting to see what some of the MOs are telling their patients.

What Will You Tell Breast Cancer Patients About MA-17R?

Nick MulcahyJune 06, 2016

CHICAGO — When breast cancer clinicians return to their jobs from this year's American Society of Clinical Oncology (ASCO) 2016 Annual Meeting, they will likely face inquiries from postmenopausal patients who are or have been receiving adjuvant antiestrogen therapy about the MA.17R study that was featured at the plenary session.

The trial results were published in the New England Journal of Medicine and have been widely covered in mainstream media, such as the New York Times and the BBC.

The 1918-patient trial demonstrated that extending treatment with an aromatase inhibitor (letrozole [Femara, Novartis Pharmaceuticals Company], 2.5 mg daily) to 10 years after an initial 5 years of therapy with an aromatase inhibitor/tamoxifen (multiple brands) improves disease-free survival (but not overall survival).

Specifically, the disease-free survival rate for the additional 5 years was 95% for patients treated with letrozole and 91% for patients receiving placebo — an absolute improvement of 4% for patients on treatment.

This translated into a 34% reduction in the relative risk for disease recurrence/occurrence of a contralateral breast cancer (hazard ratio, 66%; P = .01) for the treatment group.

However, the improvement with the extra 5 years of treatment came at a cost. Most notably, there were more bone fractures in the letrozole group than in the placebo group (14% vs 9%; P = .001) and more cases of new-onset osteoporosis (11% vs 6%; P < .001).

"Bone health remains important to risk/benefit consideration," said the study's lead author, Paul Goss, MD, PhD, of the Massachusetts General Hospital Cancer Center, in Boston, at a meeting press conference.

Median follow-up in the study was 6.3 years; the median age of the patients was 65 years.

At a postplenary discussion of the results, Dr Goss did not advocate for the use of letrozole for an additional 5 years in postmenopausal women with hormone-positive primary tumors, saying he wanted to leave that to guideline committees and others. Clinicians can do "what they want to" with the data, he said.

To get a sense of what clinicians will tell patients about the study ― and whether or not they will advocate for the extra 5 years of treatment ― Medscape Medical News interviewed a number of oncologists attending the meeting.

Here is what five clinicians will be telling their patients about MA.17R and about taking an aromatase inhibitor for potentially 10 years.

Patricia Ganz, MD, University of California, Los Angeles. "This is a question that comes up frequently in practice. There are many women who are doing well on their AI therapy and have anxiety about discontinuing their medication, and [they wonder] what is going to prevent them from having a recurrence.

This is a question that comes up frequently in practice. Dr Patricia Ganz

"I will pull up the New England Journal article and show them that roughly 1000 women received the drug vs 1000 who received placebo, and if we compare the outcomes, we see 31 fewer recurrences [of any type] in those who took the drug [67 vs 98]. The majority of the [recurrence] benefit was in contralateral breast cancers [13 vs 31]. In terms of distant recurrence, there was a difference of only 11 cases [42 vs 53].

"I will also talk about the increased risk of fractures that occurred [in the active-treatment group] and subtle differences in quality of life. If they discontinue their aromatase inhibitor, they might have a return of some of the benefits of having estrogen in their body — some may appreciate that, some may not.

"I use this high-level evidence [from the study] to have discussion about their values and preferences. They may decide to stick it out longer to see how they do. Two or three years later, they may also decide to quit. And I can support that decision, because the number of events prevented by taking the medication for another 5 years is rather modest. At the same time, everyone taking the drug has the potential to have fractures and other symptoms.

"In terms of additional insights, our hope for this study is [that further analysis may answer the question]: Is there a high-risk profile? The absolute benefit of treatment may be greater for women with large tumors or those with lots of positive nodes. If we had that information, we could tailor who we recommend to have the extra treatment."

Stephen Vogl, MD, private practice, New York City. "I am going to tell my patients: the extra years of treatment didn't do much. They had a 30% reduction in distant metastases, but it is not clear if they are prevented or just delayed; it is not clear how lethal they are. The virulence of breast cancer relates to the time to recurrence [with earlier being more virulent]. These are very late recurrences, and nine of the extra 11 distance metastases were in bone, which are really not virulent.

No, don't bother. Dr Stephen Vogl

"I have patients who have been waiting for [the results]. I have been telling them: 'I am going to come back and tell you whether you should take some more of it or not.' Some of them have been off for a few years. I'm going to tell them, 'No, don't bother.' "

Harold Burstein, MD, Dana-Farber Cancer Institute, Boston. We have known from other trials that pushing the treatment envelope out to 10 years is a good idea. Ten years of tamoxifen is a little better than 5 years of tamoxifen; 5 years of tamoxifen and then 5 years of an aromatase inhibitor is a little better than 5 years of tamoxifen alone [which was the earlier study, MA- 17].

"The topline result is, yes, longer durations do reduce the risk of recurrence and do help prevent second cancers.

"But I think, for the clinical discussion, it comes down to two things: The first is, what is the patient's risk of recurrence, based on what we already know about the stage of the cancer? And number two, how well has that patient tolerated treatment so far?

For the clinical discussion, it comes down to two things. Dr Harold Burstein

"For women who have had high-risk breast cancer ― typically, stage 2 or 3 cancers, node-positive breast cancers ― their risk moving on in years 5 to 10, 10 to 15 is still reasonably high. And for those women, there is going to be a larger benefit to continuing treatment and pushing the therapy out to a total of 10 years. But in contrast, for the women who had smaller, node-negative cancers, there is probably going to be a lot less in the way of benefit ― their residual risk is a lot smaller.

"The second thing to discuss is how the patient is doing. Women will tell us how they are feeling on these AIs. Some women have symptoms, but it does not get in the way of their lifestyle, or they have very few symptoms at all. Those women will be willing to take longer durations of treatment even for a small benefit.

"Other patients who have a lot of difficulty taking the medications...stopping probably makes sense for them.

"But what I have found is that patients are really good at telling their doctor what the appropriate length of treatment is, because they intuitively understand how risky their cancer is at this juncture, and they understand how they have felt taking the medication."

Barry Kaplan, MD, PhD, Queens Medical Associates, Fresh Meadows, New York. "The benefits are small. There are no data showing improved survival. There are real side effects. It is an expensive treatment. Even though Dr Goss said it was a relatively cheap drug, if you take it for 10 years, it becomes not so cheap. I don't see the point of recommending or using it [for the extra 5 years]. I think the benefits are not proven if you are not getting a survival benefit. These patients have already survived for some time, so these are good patients with hormone-responsive breast cancer. I would not use this treatment after the first 5 years unless the patients really demand it."

Dawn Hershman, MD, Herbert Irving Comprehensive Cancer Center, Columbia University, New York City. "At the end of the day, there needs to be a discussion with each patient about the potential risks and benefits.

"I am more likely to encourage continuing treatment after the first 5 years for patients with high risk of recurrence, patients who still have both breasts and are at risk, and patients who have had minimal or no side effects on AIs.

"Also, for some women, especially those with few side effects, the medication can feel like a 'security blanket.' And discontinuing can cause stress and anxiety.

Discontinuing can cause stress and anxiety. Dr Dawn Hershman

"The bulk of the [disease-free survival] benefit in the study was from a reduction of in-breast recurrences.... For women with minimal side effects, prevention of an in-breast recurrence or new primary may be meaningful, as it results in decreased need for surgery or other adjuvant treatments.

"The reality is that the patients in MA.17R agreed to be on a study of taking the medication for an additional 5 years after being on it for 5. Presumably, if they had severe side effects, they may not have been willing to be randomized on this study. Therefore, these results may not be representative of the whole population of women on aromatase inhibitors.

"The discussions with patients will be more difficult when someone has had severe side effects and makes it through the first 5 years."

The trial was sponsored by the Canadian Cancer Trials Group. The authors have disclosed no relevant financial relationships.

N Engl J Med. Published online June 5, 2016. Full tex

For those interested in reading the original, here (again) is a link to the featured June 5, 2016 New England Journal of Medicine publication:

Goss (2016): http://www.nejm.org/doi/pdf/10.1056/NEJMoa1604700

BarredOwl

Made me laugh, Coraleliz.

I have 9 months to chew on this. Also see my MO on Monday and will bring this up with him. He'll support me whatever I choose.

I wish they would tease out how women did relative to luminal A or B, HER2 status, and node involvement. That is the meat of the matter.

Isn’t overall survival + QOL the name of the game? If something will help me live to 85 but feel like 95, I’m not sure it’s worth it. Just saw what hell a friend of mine has gone through at 70 with severe osteoporosis and a broken hip--she’s still in assisted living till October. (Granted, she didn’t have bc and didn’t take an AI, but still.....). Bob. who is a cardiologist and sees mostly geriatric patients, says that often a hip fracture is the beginning of the end, even in a patient otherwise in good health. If the risk of stopping an AI after 5 years is that I might get a contralateral bc, then there’s always prophy mx. (I’d be 70, so I probably wouldn’t care). I’ll have to see what letrozole does to me as these next few years go by. Can I even tolerate bone-strengthening drugs? I have a R tibia held together for the past 19 yrs. with spit, scotch tape, hardware and glue. What if letrozole makes it crumble and I need it amputated? I am already osteopenic. And weight loss is extremely difficult with an estrogen-deprived slowed metabolism.

You ladies are the reason I posted what I did. Doctors are bound to "do no harm" and studies and committees gear them to decisions they hold dear. But we all know how different each of us is, so depending on the sample size of each doctor's practice...they only know and can go by what they know and have seen.

Tamoxifen caused me to have one endo biopsy and a few years later, 3 polyps and a D&C ...and at the time, I did not realize tamoxifen did little for ILC. I would never have taken it if I had known... but those studies either were not discussed or unavailable at the time I was dx. Add to it the freak-out of initial dx and not knowing where to turn for information.

Arimidex and tamoxifen caused such horrible joint and tendon pain for me, I literally cried when I got out of bed each morning. My husband, 17 years OLDER than me, was able to walk faster than I did!!!!! I don't even want to talk about my sex life. ***waaaaaaa***

And Chisandy, I have also heard that most women (who we speculate to be older, but that has not been scientifically proven with the new advent of these horrible drugs) that a hip fracture usually is the beginning of the end for women.

And AIs are supposed to cause huge heart issues and brain issues. If heart disease is the number one cause of death, are we paying (money and side effects) to exchange the "cause of death" for some of us? Do I want to live long enough to be senile?

I am not the judge and jury and we all need to do what feels right for ourselves. My "gut" told me I had cancer and I try to listen to what it has to say about treatments and follow ups.

For women who have few side effects, it may be possible to continue...and my "gut" thinks...these drugs are MADE to cause side effects to show they are working. Are women who show no side effects achieving any benefits? or just hopeful...as we all are.

Add to the confusion...we all have different grades, size, type of tumor with genetics specific to ourselves and we are diagnosed at different ages....so ALL of that plays into a decision.

I can post what and why I do what I am doing ...and so can any/all of us...and we do it because we hope and believe we are making the right decision (same for lumpectomy vs. mastectomy). It is a cruel disease that forces us to make death choices before we have to; to make choices for our families/future before we need to and to come out as unscathed for our loved ones and ourselves.

What’s the point of being statistically cancer-free for 15-20 years if you could very likely die of a heart attack, stroke, or hip fracture before that due to the drug that’s supposed to give you those extra “disease-free years?” (And if those 10 years on that drug felt like 20)? My mom died of “cor pulmonale” (COPD which caused chronic heart failure). It’s no picnic. Cancer isn’t the only gruesome thing that can kill us...and it might not be the first.

cp418- i came across the forbes article you posted. Music to my ears.......because I really don't want to continue. I pretty sure I can tweak just about any study or write up to further my cause.

My last conversation with my MO was that the benefit would be "very small" & he would leave the decision up to me. But, I got a letter in the mail, he up & retired. So it looks like I will be having this conversation with a MO I have yet to meet.

I'm 57. Sometimes I think BC could be my saving grace. Perhaps it will take me out before I develop dementia or some of the other maladies associated with aging. I have a low(as I see it) risk of reoccurence. Time to forget about BC & get on with my life.