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Anonymous · November 2017

I just heard a news story today via CBS that women with the "most common type of breast cancer" at Dx have a 40% risk of it recurring as much as 20 years later. They did not say the type but i thought this was just a real downer. Anyone on here planning hormonal therapy past 10 years?

ksusan · November 2017

Was it this study? https://www.medscape.com/viewarticle/888191#vp_1

Be sure you look at the limitations.

TectonicShift · November 2017

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YATCOMW · November 2017

I had read an article previously that those with high ER+ and PR+ and multiple nodes positive had a higher risk of reoccurrence past 10 years.......due to the fact that this describes me...... I plan to stay on my Femara indefinitely.....and my oncologist has supported me on this. I am going on 13+ plus years on it.....

Jacqueline

sugarplum · November 2017

Well, it took 3 different oncologists for me to finally find one that would renew my Arimidex for an 11th year - and hopefully beyond. As you can see by my stats, I fall squarely into the high-risk category - we have only to look at Olivia Newton-John's recurrence after 25 years to know this is a reality. I'm hanging onto every treatment trapeze I can get at this point!

Julie

wallycat · November 2017

I read 22% for no lymph and 32% with lymph node involvement. Saw nothing about 40^. They also said these statistics are older.

sbelizabeth · November 2017

There are a lot of limitations for this analysis. Many of the women were treated with much older, "suboptimal" protocols, since it's a "look back." And it's unknown how many actually finished their five years of treatment.

But it's a start, and a good conversation to have with an oncologist who makes the decision to write, or not write the prescription. I intend to just deal with the slightly achy hands and stiff joints, and keep taking the Femara indefinitely.

Anonymous · November 2017

Susan: the medscape link wants me to create account to see the article.

Julie & Jacqueline: I agree I will stay on Femara as long as I can. I really do hate the bone loss and other unpleasant SE's though. Even though the study reported by CBS was 20 years in the making, I don't believe there has been much improvement in effective treatment therapies. I mean even Tamoxifen has been prescribed going on 30+ years. The bottom line on longevity without recurrence according to my oncologist was number of nodes affected at first DX. My patient navigator in 2009 was herself a survivor with no nodes but an aggressive BC & thinking it was ER/PR+ lobular. Upon advice of her oncologist, she was allowed to discontinue Tamoxifen at 8 years. I'll keep on Femara if that's the best thing at the moment !

BarredOwl · November 2017

shelly56:

Registration is free and MedScape is an excellent resource. However, if you prefer not to register, you can usually access MedScape articles without registration by googling the title. The title of the article linked by ksusan is:

'Unrelenting': 20-Year Recurrence Risks in Breast Cancer

For completeness, here is a link to the original study publication (full-text version and a large supplement are behind a paywall):

Pan (2017): http://www.nejm.org/doi/full/10.1056/NEJMoa1701830?query=featured_home

Per the article, those with tumors over 5.0 cm were excluded, "After the exclusion of patients who were 75 years of age or older at the time of diagnosis, those who had a tumor diameter of more than 5.0 cm, those who had more than 9 involved lymph nodes, and those with missing data with respect to age or TN status, a total of 74,194 women (in 78 trials) had entered a study at the time of diagnosis."

BarredOwl

Anonymous · November 2017

I'll have to google it and read it for myself. I didn't understand your last paragraph that well. Thank you so much !

peacestrength · November 2017

My plan is to be on Femara indefinately despite the side effects. I will do the Breast Cancer Index test (even though it's for node-negative) at 5 years to get a baseline and hopefully use it as proof for extended therapy.

BarredOwl · November 2017

Shelly:

What it means is that patients with tumors over 5 cm in size were NOT INCLUDED in the study.

BarredOwl

Anonymous · January 2018

Just read a different study a few days ago (can't remember source) that said no real benefit to continue AI's beyond five years for ER/PR+. Maybe that's because ER/PR+ does not have the best response to standard chemo AC/T. Will have to see more on this hopefully.

BarredOwl · January 2018

Hi Shelly56:

"Just read a different study a few days ago (can't remember source) that said no real benefit to continue AI's beyond five years for ER/PR+."

I don't think that was the conclusion, assuming we heard about the same clinical trial. The conclusion was that in women with POST-MENOPAUSAL hormone receptor-positive early breast cancer, who received an initial five years of endocrine therapy, an additional two years of an AI (for a total of SEVEN years of treatment) was sufficient in this study population (as compared with an additional 5 years of AI for a total of 10 years). Even among this population, there may be suitable exceptions in which extending therapy for 10 years may be appropriate.

Here is a recent feature from this site regarding the trial:

http://www.breastcancer.org/research-news/5-more-years-of-ais-no-better-than-2-more

This feature relates to an abstract from SABCS 2017 regarding the results of the ABCSG-16 trial:

Gnant M, et al.. "A prospective randomized multi-center phase-III trial of additional 2 versus additional 5 years of anastrozole after initial 5 years of adjuvant endocrine therapy – results from 3,484 postmenopausal women in the ABCSG-16 trial," Presented at: 2017 San Antonio Breast Cancer Symposium; December 5-9, 2017; San Antonio, TX. Abstract GS3-01.

SABCS abstract: http://www.abstracts2view.com/sabcs/view.php?nu=SABCS17L_676

Meeting abstracts may be preliminary in nature.

For more, see these additional features:

ASCO Post: http://www.ascopost.com/issues/december-25-2017/extended-endocrine-therapy-in-postmenopausal-women-with-breast-cancer-2-years-as-effective-as-5-years/

OncLive: http://www.onclive.com/conference-coverage/sabcs-2017/no-difference-in-overall-survival-with-shorter-extended-ai-therapy

Patients interested in whether the findings of this trial may apply to them or not should discuss the abstract with their Medical Oncologist.

BarredOwl

Anonymous · February 2018

Hi Owl: According to the trial I was hearing of, there were specific factors of these two groups of women as follows:

The characteristics of the women:

half the women were older than 64 and half were younger
72% of the women were diagnosed with cancers smaller than 2 cm
66% of the women had no cancer in their lymph nodes
77% of the women were diagnosed with cancers that were both estrogen-receptor-positive and progesterone-receptor-positive
80% of the women had lumpectomy to remove the cancer
29% of the women had received chemotherapy before breast cancer surgery
51% of the women had been treated with 5 years of tamoxifen
49% of the women had been treated with other 5-year hormonal therapy regimens that contained an aromatase inhibitor.

You may relate to this study more than I, since you had no node involvement. This may be good information for the Stage 1 forum too. And a majority of these women also had "lumpectomies" *80% as opposed to many Stage 3 that choose BMX over lumpectomy. So we tend have everything thrown at us to reduce recurrence risk. My onc says the deciding factor on continuing AI's for 10 years would be nodes (and how many involved). It was definitely worth checking this info out !

Shelly

BarredOwl · February 2018

Hi Shelly:

That quote appears in the BC.org summary I linked to in my last post, so it appears that we are talking about the same study (ABCSG-16). Here again is a link to the SABCS meeting abstract:

https://www.abstracts2view.com/sabcs/view.php?nu=SABCS17L_676&terms=

Again, your remarks in your Jan 17 post about the implications of the ABCSG-16 study (re "said no real benefit to continue AI's beyond five years for ER/PR+") is NOT correct. This is because they were not comparing a total of 5 years to 7, or a total of 5 years to 10 years. They were comparing two different extended therapy regimens (on top of five years): 2 additional years or 5 additional years. Per the meeting abstract:

"From February 2004 to June 2010, 3484 women with postmenopausal stage I-III hormone-receptor positive early breast cancer were randomized in 71 centers in Austria to receive either 2 years or 5 years of additional Anastrozole (1 mg daily) as extended adjuvant therapy, after initial 5 years of adjuvant endocrine treatment."

So, everyone had an initial 5 years of some type of treatment (various regimens), and then they were randomized to receive either 2 years or 5 years of Anastrozole.

I agree that the nature of the study population informs understanding of the type of patients the findings may apply to. However, that does not mean they would apply to everyone represented in the study population. Indeed, as I noted above:

"Even among this population, there may be suitable exceptions in which extending therapy for 10 years may be appropriate."

In other words, it is possible that even in this group, some patients may receive a recommendation for 10 years of treatment.

Of course, if a study population does not contain (m)any patients like you, it might not be applicable. That is why I also said:

"Patients interested in whether the findings of this trial may apply to them or not should discuss the abstract with their Medical Oncologist."

As for me, I did not receive any endocrine therapy, so the findings (which apply to those who received a first five years of treatment) don't apply to me at all.

By the way, although considered node-negative, the "pN0(i+)" in my profile means they found unexplained isolated tumor cells in the sentinel node on the DCIS side by immunohistochemistry (i+).

BarredOwl

IAmElaine · February 2018

I am hitting my 14th year in a couple of weeks. In that period of time I have taken Tamoxifen (1 year), Arimidex (5 years) and have now been taking Femara for 7 years with no end in sight. I told my onc that as long as my bones hold up I will stay on an AI. He is fine with that.

BarredOwl · February 2018

Hi IAmElaine:

The ABCSG-16 trial included "postmenopausal stage I-III hormone-receptor positive early breast cancer." It looks like you had Stage 3C disease, which is not usually considered "early breast cancer". The terminology used in the abstract is not very clear, which is yet another reason for people to check in with their medical oncologist in case the results do not apply to them. Also, some abstracts are preliminary in nature and may not be seen as practice changing.

BarredOwl

IAmElaine · February 2018

Owl, I guess it all depends on who you ask. As you said, the terminology used in the abstract was not clear. If you ask my onc about it he will tell you that stage 3C is considered early stage and that stage 4 is considered late stage. Or I suppose someone else may say I am late stage. Which ever really has no bearing on me. I do not look at myself as a label.

I don't look at stats. I learned a long time ago that stats are pretty useless. Things like co-morbidities have a huge impact on each individuals outcomes. I have kind of been in my own trial. That is why I choose to remain on an AI indefinitely. I also do things like keeping my glucose level low as well as my BMI.

I have known women over the years who were diagnosed at early stage 1 who went on to MBC. Then I have known women who are like me, diagnosed with really advanced stage 3, who have no sign of mets 15 years out or more. My own 3rd cousin was diagnosed stage 3 in the late 1980s. They did not have the treatments then they do now. She did everything available to her at the time and lived another 22 years and died of old age in her sleep.

I guess what I am saying is, be proactive, do everything you can to beat this crap and have no regrets. It's all a crap shoot.

Newnorm · February 2018

IamElaine, thanks for posting. I agree it's all crap and we all have to keep as positive an outlook as possible to help each other through. Thanks for coming back to this site to offer your thoughts and experience. It's really appreciated. Stats a just that, and everyone is different. Good luck to us all. Xxx

ksusan · February 2018

Statistics provide some generalized information about the group, with some of the major, known variables accounted for. They aren't useless, but their applicability to a particular person may be limited. As you say, each person is distinct, but I find a statistical picture helpful for identifying known risk or resilience factors in the groups into which I fall.

BarredOwl · February 2018

I was not the person who brought up the ABCSG-16 trial in first place. The reason that I responded was because the person who did bring it up (in the middle of this thread in her Jan 17, 2018 10:49AM post) mischaracterized the findings of the trial.

While statistical group averages produced from clinical trials do not predict individual outcomes, clinical trial statistics are used in decision-making to inform understanding of the potential benefits of various treatments. To the extent that the incorrect information supplied above (in the Jan 17, 2018 10:49AM post) might confuse those with pending treatment decisions or even discourage suitable candidates from pursuing any treatment beyond five years, I thought clarification was warranted.

I agree that the meaning of "early stage" may vary in different contexts. (Nor does a reference to patients "with" early stage invasive breast cancer necessarily imply the inclusion of all types of early stage invasive breast cancer, whatever the intended meaning.) I was not trying to label anyone. What I was getting at is that the language of the ABCSG-16 abstract is not clear, and the study population MIGHT NOT have included some types of Stage III patients. That potential caveat also seems relevant in this Forum. For understanding the potential implications of any particular trial publication, what matters is the specific definition used / composition of the actual study population. Again, it is not clear here, so for those who may be interested, additional information is needed.

BarredOwl

BarredOwl · February 2018

I think there may be some confusion above, engendered by the discussion of two completely different studies in this thread:

(1) The ORIGINAL POST refers to a recently published EBCTCG meta analysis by Pan et al (2017).

This was very large meta-analysis of the results of 88 trials involving 62,923 women with ER-positive breast cancer who were disease-free after 5 years of scheduled (initial) endocrine therapy.

I purchased the full-length publication when it came out, and the patient population is described as:

"PATIENTS:

We analyzed data from women who had ER-positive breast cancer that had been diagnosed before the age of 75 years and who had T1 disease (tumor diameter, ≤2.0 cm) or T2 disease (tumor diameter, >2.0 to 5.0 cm), fewer than 10 involved nodes (stratified according to a pathological nodal status of no nodes [N0], 1 to 3 nodes [N1–3], or 4 to 9 nodes [N4–9]), and no distant metastases. All the patients were scheduled to receive endocrine therapy for 5 years then stop, regardless of actual adherence. . . "

-- From the above quote, in this EBCTCG meta-analysis, certain patients with Stage III breast cancer were clearly excluded. For example, those with 10 or more positive nodes were excluded. For example, those with "T3 disease" (Tumor > 50 mm (5 cms) in greatest dimension) were excluded.

-- Patients of various stages were also excluded on the basis of any one of: certain age; ER status (if not positive); and/or length of scheduled endocrine therapy.

-- For the part of the analysis between years 5-20, those who were not disease-free at 5 years were excluded.

In this study, all patients were scheduled to receive an initial 5 years THEN STOP, regardless of actual adherence, meaning that patients received an initial 5 years of endocrine therapy or less.

This study provides some insight into various risks of distant recurrence and death in those who did NOT receive endocrine therapy beyond 5 years.

(2) In a LATER POST on January 17, 2018, the OP raised a completely different trial, the ABCSG-16 trial, results of which were recently published in an SABCS meeting abstract by Gnant et al. (2017).

This was a prospective, randomized Phase III trial. In this trial, "3484 women with postmenopausal stage I-III hormone-receptor positive early breast cancer were randomized in 71 centers in Austria to receive either 2 years or 5 years of additional Anastrozole (1 mg daily) as extended adjuvant therapy, after initial 5 years of adjuvant endocrine treatment."

According to the abstract, the initial five years of treatment could be Tamoxifen ("Tam") or an Aromatase Inhibitor ("AI") or a switch regimen ("Tam→AI").

So, patients in ABSCG-16 had an initial 5 years of some type of treatment (various regimens), and then they were randomized to receive either 2 years or 5 years of Anastrozole, for a total of 7 or 10 years of treatment.

Thus, this is a type of "extended endocrine therapy trial," in that it assessed certain treatments in those who had received an initial five years of therapy.

Unfortunately, the language of the ABCSG-16 abstract is not entirely clear, and it is possible that the ABCSG-16 study population MIGHT NOT have included some types of Stage III patients. More information is needed to understand the specific inclusion and exclusion criteria used, and its potential applicability.

BarredOwl

[Edit: non-substantive]

Outfield · February 2018

What I am seeing as the take-home from this whole discussion is that a sentence such as "treatment X doesn't work" or "treatment X is a good as treatment Y" is essentially gibberish if you do not know the exact situation under which "X" and "Y" were studied, and the characteristics of the study participants.

Errors of overgeneralization are frequently made in lay press interpretation of study results (of any type, not just breast cancer related) . If you see a study and the sound bite strikes you as relevant, you absolutely have to look at the details. FInd a link to it. Read the "methods and materials." Were the study participants like you? Look at demographics, like age at diagnosis. Was their cancer like yours? Look at stage, grade. How about the other treatment they received? Look at when they were treated and how many participants received the same treatments you did.

If you have a mis-match in any one of those three areas, the study is not relevant to you. It's tempting to think "But that study suggests . . . " and in many cases it turns out that the results are replicated in populations beyond those that were originally studied. Heart attack risk reduction by statin medications is a great example for that. But Medicine is also full of times we got burned by overgeneralizing. Kids killed by their body's response to RSV infection after they received an early RSV vaccine are a good example - who would've thought a vaccine effective in promoting antibody production would hurt people?

Facing an unstudied decision is unsettling at the best, but it's baseless comfort to overgeneralize or oversimplify.

Texgirl · February 2018

Just seeing your post....have been on an AI since 2006 since getting off Tamoxifen. My Houston docs felt 10 years was the best to shoot for. Now that I am in Fl. , My doc is continuing what they did without an argument. So it continues ! I am on Aromasin and essentially doing great on that. Minimal complaints .

Anonymous · March 2018

Barred: I think that you as Stage 1A could take away more pertinent information from the original study that made the news. But it's probably best to ask your oncologist, which is what I did last month at my yearly visit. She cited two different discussions within the conferences of NCCN and San Antonio. She is in a group of oncs that talk about this specific subject and she admits there are conflicting opinions among her colleagues. I have personally seen a Stage 0 & Stage 2 BC reoccur within 5 years of original DX. It's really a crap shoot for sure.

Elaine: CONGRATS on 15 years out with no recurrence !!

Shelly

SSInUK · March 2018

Yes congrats Texgirl - your post tells us everything,22/22 nodes and going strong over 10 years put - these are an individual’s (fabulous) results and no population study can predict that. Barred Owl I would ask for some care and forbearance on this Forum. We all appreciate those who research and share knowledge but we come to these particular threads too for gentle mutual understanding. If any group is facing down tough statistics it is this one. There is huge courage and grace among women here some of whom have more or less been told by their oncs from the outset to get their things in order! The tone of some of the posts on this thread s a little jarring and I’d ask ifor sensitivity

Traveltext · March 2018

I agree with SSinUk, that sensitivity is required in the discussion going on in this thread. I'm a guy, so it's not just women that think this.

Plus, I think much research is being applied to groups of patients in a very pedantic manner and many posters apply results that are by no means a sure thing.

Take this research that shows: "...that the metastases in the axillary lymph nodes do not seem to spread further to other organs, so even if these metastases can show how aggressive the cancer is, it is not they that cause the spread."

https://www.news-medical.net/news/20180227/Scienti...

Here's a link to the full paper. Heavy going but very interesting:

https://www.jci.org/articles/view/96149

How does that throw a lot of long-held assumptions out the window and affect older research conclusions? Greatly, I'd suggest.

I don't worry overly about my prognosis, rather I continue to be happy with the treatment I received, and like many people here will stay on hormone blockers for as long as I can.

wallan · March 2018

Hi Outfield:

Thanks for your post. I am of the same mind as you. We do overgeneralize and oversimplify these studies and extrapolate to ourselves. The media does and we do and so do some doctors. I think its a way for us to try and control something very scary.. to reassure ourselves we don't fall into that category, we are safe... blah blah blah..

I know from doing years of research myself and having taken several courses in biostatistics and population statistics during my grad studies, that statistics are misunderstood alot, even by the researchers themselves. Yet, they have value in how the study being conducted played out.

So I get that statistics are used by the medical community as guidelines for treatment, because that is all they have really. As for predictive value, usefulness only depends on the variables being studied, and alot of them are not controllable. So, its a guess at best how effective treatment will be for this person or that person or if cancer will recur or if it does, how long you will survive. I think we can say that our treatments ARE effective, but not really how effective.

Thats my two cents.

wallan

Wildplaces · March 2018

hmmm,

On ANY given day when ANY treatment decision is made,

there are at least the following factors into play, not listed in order of significance or impact:

1. Research - what studies tell you and your doctor

2. You the individual - unlike any other - sometimes unrated but Sooooh important

3. Your cancer biology - probably unlike any other ( we are just scratching that surface - watch this space)

4. Your doctor, their clinical experience, their capacity to get YOUR story

5. The relationship you have with your doctor

6. YOUR capacity to give a good story

Of all of these 1 is the stuff you read and it's mostly about numbers- but what you do with 1 depends on 2-6.

The push for positive results in order for papers to get published, the manipulation of data sets in analysis, the often sparingly reported methods and underpowering of many published papers, have lead to an increasing call for statisticians to be involved in study design, not only end statistical analysis, and of course for the methodology behind powering studies to be clearly reported together with the raw data.

Critical appraisal of studies is a skill and involves knowledge across several disciplines.

Finally - let's not forget common sense.

😊🌷🐣

Traveltext,

The moment lymphovascular invasion was shown to be a strong predictive factor - hematogenous spread became a big part of the game. It's a good paper - and more importantly it makes sense - it's logical.

What if the lymph nodes rather than afocus of spread - where actually like all lymph activity - a manner of trying to contain disease??

Ok probably one step too far ...but who knows? I don't.

Sara536 · March 2018

Does it matter if we are focused on living or if we are focused on dying?

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