How Many are doing 10 years on Aromatase Inhibitors
Comments
-
Saw my MO Thursday - on my 6th year of AIs. She doesn't feel there is enough info to endorse the BCI test. We get about that far. She has left it up to me whether to stay on AIs, but so far "the research only shows only a 1% decrease in recurrence and that is in the other breast" and I had a BMX, so doesn't even apply. She knows what a worrier I am, so we've agreed I'd stay on for 2 years extra.
0 -
Quinn, I am very interested to see what happens regarding BCI. My onc knew nothing about it and frankly didn't even seem interested. My younger former onc. is the one who ordered it. My Oncotype was 12, but BCI came back high risk. Confusing.0
-
So far I've spoken with 2 MOs (both very highly regarded in their field) my BS and my GYN. All have nothing but great things to say about the BCI test. One even said it's accurate to within .001%. I, myself, had a "low" Oncotype of 15 so no chemo but had High Risk/Low Benefit on the BCI. This means I have some soul searching to do because I do believe the BCI test to be a good one based on all that I've read and heard.
0 -
I got curious about BCI, so I went to their website. I had to look to their clinical trials to really understand it though. Their website is way worse than Oncotype DX for the layman- just saying.
BCI looks at additional biomarkers over Oncotype. It looks at a gene expression ratio of proliferation to cell death and also looks at responsiveness to hormone therapy. So this is how you could be high risk/low benefit. Some people have a risk for early recurrence which (I think) also indicates risk for late recurrence, but some people have a risk for late recurrence only. About 20% of low risk individuals got reclassed as intermediate risk with BCI vs Oncotype. About 5% of low risk got reclassed as high risk. So they say oncotype is good test, but this provides additional information. Hmmm, being a low oncotype with mastectomy who took her tamoxifen every day and still recurred locally, I would be very interested to take this test and see what it says. I'll have to wait until next year when I hit 5 years. Pretty sure I would be high risk based on their info, not sure about the "benefit" category.
0 -
Thanks, TwoHobbies. That explanation makes sense. I am in that 5%. I think the fact that I am 100% ER has a lot to do with it. My ki-67 was also at 17, and grade 2. My fairly new, young oncologist ordered the BCI shortly after diagnosis just because I asked about it. I would have rather waited for the 5 year mark as it totally deflated my good feelings about having a low Oncotype (12) and made me second guess the decisions for no chemo, no radiation. At least I have high benefit from antihormonals, again probably because of the 100% ER.0
-
TwoHobbies--Last year when I was home for Christmas I spoke with my family friend who is a top MO in my home state. He's the one that is so high on the BCI. He told me that I should go ahead and do the test and I replied that I was only 4 years out and he said it really doesn't matter. They are testing your original breast tissue sample and it'll give the same results now as it will in a year. I didn't have an appointment with my MO for another 9 months so I just waited but he said he could have requested it at any time if I'd asked. So maybe ask your doctor if he'd go ahead and request the test now. It'll give you plenty of time to think about your results and research your options. I actually don't hit 5 years on Tamoxifen till Feb 1st so I've got a couple of months to think about what I'm going to do and I quite like not being rushed in a decision for once!!
0 -
Lala that is a great idea. I'm going to ask my new onc about it, since I've already met my deductible this year. No way in hell do I want to take those pills again, but I will if I have to.
0 -
Interesting so many MO's so high on BCI and mine is not. While my MO is not at an NCI center, she did a fellowship at one and contacts them regularly and keeps up on the latest research like a hawk. She did suggest, though, that I take a trip and make an appointment with one of the top BC MO's on the West Coast, so she is referring me to UCSF to see their "top" MO and discuss these things. She first suggested OHSU to see their new MO who is suppose to be the next best thing, but a friend of mine recently went there and was not impressed.
0 -
For those of you who had the test done, it sounds like you've actually seen the report. My MO did not provide me with a copy, so I've contacted the company and asked for my records. I really need to see it with my own eyes. I'm also going for a second opinion as I don't trust anyone anymore regardless of where they practice.
I had to really push to get my test. And yes, since it's done on your original biopsy, what's the difference? I'm in my 4th year - but still - it won't change the results. All you have to do is call your MO and they'll take care of the rest. Being able to know your score sooner rather than later is a bonus as far as I'm concerned. The thing that really pushed me to do it sooner is because I'm changing to a new insurance plan next year and I'm reading that they don't cover genetic testing.
0 -
bc101---My MO came to our meeting with an extra copy for me! But then again, I've made all my doctors give me copies of test results and surgical reports and such from the very beginning. My dad (who's a retired doctor and also runs a medical malpractice insurance company) told me from the beginning to 1) ALWAYS get a second opinion 2) get copies of all your records at all visits and 3) never pay the first bill you get from the doctors/hospitals. Advice to live by since a second opinion caught more cancer and I can't tell you how many times I've referred to my records and I've saved myself hundreds if not thousands by not paying the first bill and making them resubmit to insurance. My biopsy bill was $2800 when I first got it and $1250 when I finally paid it!! Lots of mistakes on it!!
0 -
And they just had this story on the NBC Nightly News....
Breast Cancer May Return Even 20 Years Later, Study Finds - NBC News
0 -
Did anyone see the National News today about 40% of all breast cancer diagnosed women will go on to mets even after 20 years? They are encouraging folks to look at extending the AIs.
0 -
0
-
I started Femara in July 2012, so I'm in year six. Side effects have been minimal and manageable.
When I think about how I'd feel, emotionally, about coming off Femara, I'd be willing to stay on the drug pretty much forever.
0 -
I agree, sbelizabeth. I just hope my bones and heart can take it.0
-
I am in year 6 too. The first year was an adjustment (joints, trigger fingers, thinned hair on top), but that (not the hair) got better over time. Now I'm getting a trigger finger again? I guess that is minor compared to recurrence, but it reminds me that these drugs are not innocent. But nor is breast cancer and the thought of recurrence. I do believe exercise and eating non-inflammatory foods can mitigate some of these symptoms. Weight loss is tough, though.
After reading some of the articles posted above, I'm not any more clear on what I should do. My MO said the studies for 10 years only relate to recurrence in the other breast showing significance. I don't have one of those????? She is not yet convinced that BCI is the answer either. I will be going to see a MO at UCSF for more answers this coming year.
0 -
With my stage and node status I don’t think the BCI test would be possible for me. I’m not osteopenic (yet) but my MO started Denosumab shots a couple of years ago, mostly for prevention of bone mets
I agree that maintaining healthy weight, close to impossible for some of us, along with exercise and healthy diet, are critically important.
0 -
Sbelizabeth, it looks like I am in the same boat as you are except for I was slightly osteopenic from the beginning. Glad to see you are doing well six years post diagnosis.
Best to all.
0 -
We should be careful not to be spreading fear instead of information. The "40% chance of recurrence after 20 years" applies only to a small subset of patients. I had horrible side effects from the AIs and it took everything I had to get to my 5 year mark. My oncologist told me I had a "slight" benefit if I continued on to 10 years. That slight benefit was not worth the hell of joint pain and severe hot flashes I endured for 5 years. Please be sure to talk to your doctor about your specific case and disease characteristics and make the best decision for you. I'm just hoping no one will make a knee jerk decision based on fear; the AIs have their own set of side effects. Bottom line is, if you've ever had cancer, you are always at risk of recurrence. And you can always develop a secondary cancer (I did).
"Among patients who were recurrence-free when they stopped taking endocrine therapy after five years, the highest risk of recurrence was for those with originally large tumors and cancer that had spread to four or more lymph nodes. These women had a 40 percent risk of a distant cancer recurrence over the next 15 years. Women with small, low-grade cancers and no spread to the lymph nodes had a much lower 10 percent risk of cancer spreading distantly during the following 15 years." (this is from the eureka alert story link)
0 -
ladyinbama...i wish they had mentioned my situation, small, no node aggressive cancers....do I nterpolate for my percentage?
0 -
Sorry for the long post! I put the whole article here for those who are interested:
'Unrelenting': 20-Year Recurrence Risks in Breast Cancer
Nick Mulcahy
November 08, 2017
The risk of breast cancer returning continues long after the initial treatment has been completed. A new analysis shows that in the 20 years after initial diagnosis, there is an ongoing, steady risk of the cancer recurring in the form of deadly metastatic disease.
The absolute, cumulative risk for metastatic or distant recurrence among women with estrogen receptor–positive (ER+) breast cancer ranged from 10% to 41% over that time span, depending on various disease characteristics.
The findings about women with ER+ disease, which is the most common form of breast cancer, were published online November 8 in the New England Journal of Medicine.
The data come from a meta-analysis that included 88 clinical trials involving 62,923 women who were disease free after 5 years of scheduled endocrine therapy with tamoxifen or aromatase inhibitors.
Thus, all of the recurrences happened after that initial 5 years.
The women all had stage T1 (≤2 cm) or T2 (>2 cm to 5 cm) breast cancers (of varying grades) with fewer than 10 positive lymph nodes and no distant metastases. The patients were followed for up to 15 years after the 5-year treatment period, which generated 20-year data.
What is "surprising" about the findings is the "unrelenting risk over 20 years" and that metastases occur even among patients with the best prognoses, senior author Daniel Hayes, MD, of the University of Michigan Cancer Center in Ann Arbor, told Medscape Medical News.
The main aim of the study was to identify subgroups of patients for whom endocrine therapy could be stopped (thereby avoiding the side effects) after 5 years because their risk for long-term distant recurrence was "so small," say Dr Hayes and his international team of coauthors.
But they found that even among women with the least-threatening profile of small tumors (T1) who had no lymph node involvement (N0), there was a cumulative recurrence risk of 13% over a 20-year period. (The risk was 10% for the less aggressive, low-grade cancers; 13% for moderate-grade cancers; and 17% for high-grade.)
Notably, the annual rate of distant recurrence for these patients was about 1% for a period of 5 to 20 years (ie, after treatment ended), resulting in the 13% cumulative risk.
The new study "quantifies the 20-year risk more reliably than previous studies," owing to size, length of follow-up, and the quality of clinical trial-only evidence, say the authors.
The data "can help women and their health care professionals decide whether to extend therapy beyond 5 years and whether to persist if adverse events occur," they conclude.
An expert not involved with the study welcomed it but called attention to the concept of data reliability.
"This is a very important study because it provides some guidance how to select early-stage breast cancer patients for long-term, extended endocrine therapy," said Lajos Pusztai, MD, DPhil, of the Yale Cancer Center in New Haven, Connecticut.
However, the long-term follow-up means that study patients were treated 2 to 4 decades earlier "with therapies that we now consider suboptimal," Dr Pustzai added.
In addition, during the past 30 years, diagnostic, staging, and tumor assessment strategies and accuracy have dramatically changed, he noted. The majority of breast cancers are now detected through screening. Such cancers are associated with better prognoses than clinically apparent cancers.
"For these reasons, it is likely that the risk estimates presented in the paper do not completely apply to contemporary patients, particularly to screen-detected T1N0 cancers," Dr Pusztai told Medscape Medical News.
The newly reported 10% distant recurrence rate for low-grade T1N0 tumors "contradicts the remarkably good survival results seen in randomized trials in the past 15 years," he added.
It is likely that the risk estimates presented in the paper do not completely apply to contemporary patients. Dr Lajos Pusztai
In short, some of the risks reported in the new study are probably higher than those seen currently, he suggested.
Nevertheless, Dr Pusztai agreed with the study authors that the major predictor of distant recurrence risk was status of the tumor stage and lymph node involvement at diagnosis.
Table 1. Distant Recurrence Risk to 20 Years
Stage at Diagnosis Nodes Involved Cumulative Risk T1 0 13% 1 - 3 20% 4 - 9 34% T2 0 19% 1 - 3 26% 4 - 9 41% The main massage for me is that clinical stage matters.Dr Lajos Pusztai
The study authors state, "The risk of distant recurrence was strongly correlated with the original TN status." They also report that tumor grade and Ki-67 status were of only moderate independent predictive value for recurrence and that HER2 status was not predictive (however, only 2% of the women received trastuzumab).
Talking With Patients
Dr Pusztai said that the new data raise "a pressing clinical question: who are the patients who really need 10 years of endocrine treatment and who are cured with 5 years?"
He explained that several randomized clinical trials have demonstrated that 10 years of adjuvant antiestrogen therapy is more efficacious than 5 years of therapy. However, "the improvement is small, with 2% to 3% fewer distant recurrences, and the costs and potential side effects of taking a pill for 10 years are not negligible," he observed.
"Useful" molecular diagnostic tests, including the Breast Cancer Index and the Prosigna assay, can now help identify patients who are both at risk for recurrence and remain endocrine sensitive and therefore benefit from extended endocrine therapy, he added.
Another expert who was approached for comment, Virginia Kaklamani, MD, of the Unitersity of Texas Health Science Center, San Antonio, said the new study "changes the conversation with patients.
"Extended endocrine therapy becomes an important part of the discussion, given the fact that [distant] recurrence after 5 years is higher than recurrence during the first 5 years," she told Medscape Medical News.
Extended endocrine therapy becomes an important part of the discussion.Dr Virginia Kaklamani
This is a reference to the fact that the study analyzed recurrence and disease-specific mortality risks in 5-year increments. And for each subgroup analysis, the same pattern was seen: a steady increase of associated risk over time, up to 20 years.
Steven Vogl, MD, a private practitioner in New York City, said the study was "good to have" and that he would look at it "again and again" with patients.
"What's nice about this paper is that they give you what you need to know ― the risk of distant metastases and death from breast cancer," he told Medscape Medical News.
He explained that breast cancer is only deadly once it spreads to distant vital organs.
Overall, the risk for breast cancer mortality "looks identical to distant recurrence except with lower percentages at each time point," summarized Dr Hayes.
Table 2. Cancer Mortality Risk to 20 Years
Stage at Diagnosis Nodes Involved Cumulative Risk T1 0 7% 1 - 3 13% 4 - 9 22% T2 0 13% 1 - 3 20% 4 - 9 29% The new meta-analysis has several limitations, including that it involved women who were scheduled to receive 5 years of endocrine therapy ― not who completed it. In six of the trials that investigated only tamoxifen, a "substantial minority" (11% to 31%) of women did not complete treatment.
That fact may lead to higher rates of recurrence risk in the study, just as 100% completion would lead to lower risk.
However, the authors also suspect that the rate of distant recurrence would have been 5% to 10% higher had the data not been tamped down by unreported breast-cancer events.
The team also could not "reliably assess" the relevance of chemotherapy to prognosis after the treatment period ended at 20 years. They acknowledged that the risk for recurrence after 5 years may be lower for women who receive contemporary chemotherapy compared to the risk for women in the study, echoing Dr Pusztai's comments.
The study was funded by Cancer Research UK, the British Heart Foundation, and the Medical Research Council at the University of Oxford. Dr Pusztai has worked with Biotheranostic to assess use of their Breast Cancer Index. Dr Hayes, and Dr Kaklamani, and Dr Vogl have disclosed no relevant financial relationships.
N Engl J Med. Published online November 9, 2017. Abstract
Follow Medscape senior journalist Nick Mulcahy on Twitter: @MulcahyNick
For more from Medscape Oncology, follow us on Twitter: @MedscapeOnc
0 -
Quinncat: Your doctor should be able to tell you something more specific. I was stage IIB, 2cm tumor, 1 positive node, ERPR+. I had a bilateral mastectomy and 6 rounds of chemo. Another thing the articles usually fail to mention is that the continued AI use has mostly shown benefit from keeping the cancer from recurring in a remaining breast. Since both mine were gone, that wasn't an issue. My onc told me I could get about 2 to 5% benefit from continuing out to 10 years. I had an awful time on the AIs, every side effect in the book and felt like crap the whole time. I told him I did not want to continue and he agreed.
0 -
Not sure if I have ever posted on this thread. So, hello to all. I am over 7 years from diagnosis and treatment. After trials on Aromasin and Arimadex which produced very painful joints, I have been on Letrozole (Femara) for exactly 7 years. I have extremely stiff muscles and joints, but at least not painful. With the latest news, I am prepared to continue for at least 10 years. Wonder if there are any studies showing promise with reduced dosage.
0 -
I agree with those who are advising caution; MD Anderson News posted the article with advice to talk to your doctor about your own recurrence risk. Here's the NEJM article link: http://www.nejm.org/doi/full/10.1056/NEJMoa1701830
Note in the Results paragraph the statement " The risk of distant recurrence was strongly correlated with the original TN status" - TN being the tumor size (T) and number of positive nodes (N). The rest of that paragraph neatly sums it up.
0 -
Joycek, I am curious with your very early stage and low grade, why your onc wants you to do ten years. Is it based on your Oncotype?0
-
I notice that most of you on here are HER2 negative. What happens to those of us who have ER+ but are also HER2+? Does anyone know if the ER+ data holds true in my subset of patients?
0 -
Hi everyone, I haven't been on this thread before but I just noticed it and thought I'd add to it. I will be on Femara/Letrozole for the rest of my life, which I hope will be longer than ten years. The reason is I was diagnosed de novo Stage IV with bone mets in October 2016. I'm highly ER+ PR+ HER2- and had primary tumours in both breasts, a 2cm on the left and a 10cm on the right, with 29/29 lymph nodes cancerous and removed during my BMX. I'm on a trial for Ibrance and Letrozole and will be for as long as the trial lasts. After that I'll be on this regime for as long as it keeps me stable. The reason for staying on Letrozole for life is because if I don't, the mets will progress. I'm not having any real problems with it. I can't say I like it but I prefer it to the alternative. My hair has thinned out a bit all over and is dry and lifeless and my fingernails are rubbish. At first I had some nausea but that's under control now. I had all the usual menopausal type symptoms. My bones and joints ache but that could be from the mets as they're extensive in every part of my skeleton except below the knees and in my arms. Now that my tumours are stable, I'm doing careful yoga type stretches to try to stay agile and am doing quite well with that. If I were asked would I stop taking it because of side effects, the answer would be an immediate NO! I want to live as long as I can and to be here to see my son marry and have a family and I'll do whatever it takes to achieve that.
Weety...as far as I know HER2+ involves some difference in treatment from HER2-. Sorry I can't provide more information.
0 -
Thanks, Joycek. Sounds like you have a good team. Best wishes!0
-
LadyinBama - my risk of recurrence over 10 years is 18%, but forgot the CI. That's from the Oncoscore of 39 (29% +- 8???% Confidence Interval, - 9% for chemo and -2% for AI rather than tamoxifen). So I think 18% plus or minus 8%, though can't remember the CI.
My MO is just not ready to stake her claim on the BCI test, so sending me to UCSF to ask questions and also figure out what I should be doing for my BRCA2+ status. Thankfully, my brother's new girlfriend goes to the same doctor UCSF and tells me she is tops in the field and will escort this small town girl around San Francisco.
0 -
The NEJM study posted here awhile back is interesting ("20 year risk of Breast Cancer Recurrence after stopping Endocrine Therapy at 5 Years)." According to this study, my risk of distant recurrance is 26%, which is accumulative risk as I understand it and sounds quite significant. But based on my BCI test, I am low risk w/low benefit. Still, my fear factor is way up there. Especially since I didn't have chemo or rads. l I feel my risk is high just based on other factors like having ILC, large tumor, positive sentinel node, time between treatments, 2 failed lumpectomies... But then I will always worry, no matter what.
0
