The 30% figure has been around for decades. As part of another discussion here recently, I found a couple of studies that suggest that the percent of early stage patients who go on to metastasize has come down significantly. I'll copy and paste some of that information here.
From Examination of a paradox: recurrent metastatic breast cancer incidence decline without improved distant disease survival: 1990–2011:
"The observed fifty percent relative decline in distant breast cancer recurrence over time may be related to both improved treatment for initial disease at diagnosis decreasing recurrence risk (hormonal therapy, polychemotherapy, dose-dense chemotherapy, taxanes, and trastuzumab) and stage shift to more early and less late stage disease at diagnosis with improved screening technology and screening program participation. Distant recurrent disease incidence decline over time differed by phenotypic characteristics. We observed a 70% decline in distant disease recurrence among hormone receptor-positive patients and a 50% decline among hormone receptor-negative patients over time. We observed a 60% decline in distant disease recurrence among HER2 positive patients from 1999 to 2006. The differential decline associated with phenotypic subtype creates a new profile of recurrent metastatic breast cancer with fewer HR and HER2-positive cases and relatively more TNBC cases. Ten-year cumulative incidence comparisons to accommodate the longer interval to distant recurrence among HR-positive versus HR-negative disease did not significantly differ from 5-year rates." Source: Examination of a paradox: recurrent metastatic breast cancer incidence decline without improved distant disease survival: 1990–2011 https://link.springer.com/article/10.1007/s10549-018-05090-y
From Differential presentation and survival of de novo and recurrent metastatic breast cancer over time: 1990–2010, here's a graph showing, over 3 time periods, the percent who have developed recurrent MBC, by stage at time of initial diagnosis:
And moth, to your comment, this article presents an attempt to determine the number of people living with mets in the U.S., Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States:
"This study demonstrates that there are a large number of women in the United States living with MBC and that this number has increased in more recent years, likely the result of treatment and aging of the U.S. population. This study demonstrates a growing burden of MBC in the United States. It also makes clear that the majority of patients with MBC, the three out of four who are diagnosed with nonmetastatic cancer but progress to distant disease, has never been properly documented. Given the growing burden of MBC, it is critical to collect data on recurrence to foster more research into the specific needs of this understudied population."
the thing that stands out for me from the examination of a paradox article "Out of 8292 invasive breast cancer cases stage I–III at initial diagnosis from 1990 to 2011, 964 cases (11.6%) had distant metastatic recurrence (rMBC)."
That's quite a bit smaller than what the Dutch study found
Beesie and Moth, I follow this thread. Its where my fear lingers. Beesie, I have to admit that when I see the graphs and quotes I hear this humming white noise, much like the blank panic I experienced in grade 5 when asked to do long division at the blackboard. I need it interpreted for those of us intellectually challenged who could look at a graph all day and not gain one iota of information from it (me).Moth, what were you meaning when you said many people don't understand their Oncotype scores?
runor, the italicized paragraph in my previous post provides a summary interpretation.
Beesie, I appreciate you sharing the article and analysis. Being a fan of graphs (sorry, runor!) I read the entire article and examined the graphs. One thing that jumped at me was the length of follow up. The study is based on follow up results through 2016. They talk about the 2005-2011 cohort having the lowest rMBC incidence, yet this is the only cohort that had patients with less than 10 year follow up. As we know (and article states), HR+ time to distant recurrence can be a lot longer than 5 or even 10 years, so I'm not sure if this is accounted for anywhere in the study. In other words, some of the patients diagnosed in 2005-2011 may still develop metastatic disease, while patient from other cohorts are a lot less likely to develop any after >20 years since their DX. Am I missing something?
FarAwayToo, interesting that you mention that. It's the same thought I had when I read the study.
The shorter follow-up for the most recent cohort is mentioned only once:
"Colleoni et al found a lower annualized hazard of recurrence among ER-positive versus ER-negative breast cancer in the first 5 years post-diagnosis which reversed at 10 years post-diagnosis . With less follow-up, our last cohort (2005–2011) findings may be skewed towards more triple-negative and less HR+ distant recurrence due to differential time to distant relapse associated with hormone receptor status. For this reason, we ran additional analysis using only the first two cohorts and Kaplan–Meier plots with at least 10-year follow-up and found no difference in proportional change over time."
From reading the report, it appears that modelling was used in the calculation of the results. And of course, a portion of the most recent cohort did have 10 year follow-up. Still, I would agree that the results for the 2005-2011 patients might be under-estimated. But if you just compare the 1990-1998 cohort with the 1999-2004 cohort, the 5 and 10 year results show significant declines in the percent of patients who develop mets. So whether the decline is 30% or 50% may be in question, but in either case it's good news.
While I'm glad to see there are apparent declines in recurrence (esp in some subtypes of breast ca) I do wish that they would list the actual rates rather than just listing relative declines. But also, a 30% relative decline would knock the recurrence down from the high of 30% that was batted about, down to 20%. And it's possible that the 30 was high to start with? One problem with us not counting cases well is that the studies - even ones published very recently - are often looking at datasets which closed 5-10+ years ago but that's what we have. As an aside, I've read the Estimation of the Number of Women Living with Metastatic Breast Cancer in the United States several times now because I feel like the data point we're looking for *should* be in there somewhere. They know how many women get dx with breast ca, they know how many are de novo and how many are recurrent, so they should be able to say what percentage of early stage dx get recurrence. But I read over and over and didn't find it. I almost want to email an author and see if they know the number...
YES, email the author!! I've done this a couple of times and gotten very quick responses. People are excited to share what they're working on and they WANT people to understand it. Please do, and let us know!
I did email the prinicipal author. Will let you know if I hear back. She works for NIH. Who knows, maybe it will land on her desk when she's procrastinating and glad to do something else for a bit :P
I am not great with all of the statistics but often wondered if the 30% was high. The latest figure I have seen is a survival of 80% for 15 years. If stage 4 de novo is 6 to 10 % and some of those are in the 80% that would definitely mean less than 20 % of the others have recurred. Am I missing something here? Thank you
This thread was started 7 years ago. The 30% figure may have been an accurate long-term stat at that time, but even then it would have been important to note that long-term mortality and survival stats by necessity are based on people who were diagnosed a long time ago. So at best this stat was only minimally relevant to someone diagnosed in 2013. And now, 7 years later....
I wish this thread would be allowed to fade into oblivion. The topic and discussion is relevant, but the subject line of this thread unnecessarily scares so many people, and too many people believe this stat just because they read the subject line. Not many people bother to read all the comments, many of which question or contradict this stat, as my previous recents posts did, and as this post will.
If you look at the most latest SEER data in the chart below, the most current 25-year survival rate stat available is based on people who were diagnosed during the period of 1985-1989. Treatments today are completely different. Even the most recent 15-year survival data is based on people diagnosed and treated in 2002, 18 years ago. So the long-term survival figures from this chart need to be considered in the context of the years when these individuals were diagnosed, and the treatments available at that time.
Over this 23 year period, 15-year survival has improved from 56.1% to 81.7% - this is very significant. For the 20 and 25 year survival stats, while the 'most recent' data available is not very current, we do see similar significant improvements when compared to the 1975-1979 period.
Judy, Stage IV de novo is consistently 5%-6% of those diagnosed in any given year. And while I've used the example of 15-year survival stats in this discussion, I wouldn't consider 15-year survival to be an equivalency for what percent of early stagers develop mets. Many patients who develop mets, particularly those who have ER+/HER2- cancers, may not be diagnosed for 10, 15 or even 20 years, and might then survive for an extended number of years. 25 or 30 year survival stats probably better reflect what percent of early stagers develop mets, but these stats are just not relevant to someone diagnosed today, with such different treatment protocols.
Beesie, thanks as always for digging out and presenting the stats in a way that (I consider) is easy to understand. Most people don't have any training at all in statistics or in reading academic research of any subject. It's pretty confusing in general, and even more in trying to figure out how those stats apply to the individual. And even if you can get that far, it's hard to know what to do with that information. That's a big part of where the fear or anxiety comes in, at least for me. Anyway, thanks.
For the individual, IMO Predict is a good tool (in addition to discussing with the MO, of course). https://breast.predict.nhs.uk/tool
I was technically a 'caught early, stage 1 blah blah' but 22% of women with my stats & treatment are dead 15 yrs later. Not as bad as 1/3 but again otoh, I was supposed to be a "we got it early" success.Ultimately, it's binary. You recur or you don't. You're metastatic or you're not. You can try to put your thumb on the scale by doing all the treatments, exercising, not drinking, not smoking, maintaining good BMI etc etc etc but if dna wants to misbehave, our bodies can't always control it.
I think it lingers in our minds forever. I don't think it's about freaking people out so much as being clear that there is no guarantee, there is no cure, anyone can recur, or have a new primary that is metastatic & having had cancer once itself raises risk 3-4 fold so there is always going to be the lurking worry.
Thank you Bessie for your reply. Very Interesting information. Judy
Thank you so much for being willing to share your knowledge with people on this site. I was just thinking today how grateful I am that you have chosen to read and learn and help those of us who are interested in the science and statistics. I am grateful. For me, it is important to understand my risk of recurrence, because even though “only" DCIS, I did have close margins and additional surgery, and because ER-/PR-, it would be harder to treat a recurrence. And of course as Moth points out, the greater risk for those of us who have had breast cancer is always there. I want to understand as much as I can, and not be blindsided if it comes back. Then I want to put that info and fear into a box and only let it out occasionally. (Sometimes that works, and then I have a twinge in my foob or under my arm and all rational thought leaves my brain).
Still, of all the things that worried me and I thought might happen to me, breast cancer just wasn't it. So, if I can't control if it comes back (not really), I will learn as much as I canand try not to be shocked.
"I think it lingers in our minds forever. I don't think it's about freaking people out so much as being clear that there is no guarantee, there is no cure, anyone can recur, or have a new primary that is metastatic & having had cancer once itself raises risk 3-4 fold so there is always going to be the lurking worry."
moth, I agree. I hate it when I see people come back here, shocked that they have been diagnosed with a local recurrence or with mets, or with a new primary. It's one thing to be angry or upset, but nobody should be shocked. Everyone should understand their risk and know that no matter their diagnosis, no matter how low their risk, and no matter what they do, a local recurrence or a metastatic recurrence or a new primary is possible.
That said, there is a difference between having a 5% risk and a 35% risk. And everyone should understand that too, and understand where they fall and why.
The discussion about future risk is important, and one that I engage in often on this board. What I dislike is the title of this thread, which is 2020 is misleading and simply no longer true. And it's just so broad. All "early stagers"? Stage IA and Stage IIIA do not confer the same risk. All other things being equal, ER+/PR+ and triple negative do not confer the same risk. Risk is so complicated; how can a single statistic be in any way meaningful for 80%+ of all breast cancer patients? Yet I see the 30% stat parroted back by women on this board who have small, favourable, early stage cancers and likely have a risk more in line with 5%-10%. I have seen too many women terrified by this stat that doesn't apply to them.
This is a 7 year old thread with an outdated title. I cringe whenever I see it pop to the top of the active list, sometimes after months of inactivity. I wish this thread could be retired. But I'm all for continuing and participating in any discussion about future risk.
Oh my god! I'm reading along and realize there are two posts here by two long-time posters that so perfectly sum up the picture. There is Beesie, calmly, steadily, with facts and rationality talking us out of the tree. And Moth sums up perfectly why we're up the damn tree in the first place!
Beesie, I get why you wish this thread would fade, It does have an inflammatory, misleading title that jolts and jars and makes people climb trees in panic and despair. Sussing out the truth requires thinking, rational examination of all the stats and numbers and being able to figure out how they apply to us and what we're going to do about it : come out of the tree or wait for a hunky fireman with a ladder. With my luck they'd decide rescue was too risky and shoot me with rubber bullets until I fell out.
I follow this thread because while I have gotten on with life more and more all the time it is never, NEVER out of my mind. That blissful bubble of eternal life was popped and their ain't no going back.
Perhaps the Mods could revise to the title somewhat? Instead of will 30%, What % of early stagers will go on to metastasize?
I don't know if that type of modification is allowed, if the original creator of the thread would be willing to have that revision made.
Thanks, Beesie for your wonderful absorbable information. It is so very helpful and so appreciated.
Beesie - Thanks so much for sharing your knowledge with the rest of us. I'm still a newbie currently going through chemo. I like to educate myself as much as possible, but find I get discouraged/confused by so much misleading and outdated information out there. I'm throwing everything I can at this beast with the hopes of no recurrence, but I'm also not naive to think it can't happen. I already find myself worried about every new ache and pain, and I'm sure that will continue. The title of this thread is what made me click on it to find out more information so I'm thankful for that. I agree there are many who probably read the title without reading the comments so may not helpful for them.
Moth - I tried the IMO Predict tool but it only gave me %s with surgery only. I assume (hope!) these increase the odds of survival.
I had a low oncotype score of 9. However, my breast surgeon ran it on my tumor biopsy and not post surgery. Before my surgery, my tumor size was estimated at 2 cm with no lymph node involvement. My tumor ended up 4.5 cm with 3 lymph nodes affected. So not sure how much to trust that score. I wasn't educated enough at that time to challenge the timing of the Onco test. My MO office then got me in a Mammaprint study. On that, I'm considered "Low" risk but it's at the upper end of Low, not too far from High, so of course I worry.
brittonkb, you should be able to input your treatment into the PREDICT model once you complete the section on your diagnosis. The treatment options don't show up on the page until that top diagnosis section is filled out.
Since the Oncotype score is based on a test of the genetics of your cancer - the test looks at 21 genes within the cancer cells - I wouldn't think that the result would be different with a biopsy sample vs. a a surgery sample. What would be different is the scale on which the recurrence risk is assessed, since there is a different scale for node negative vs. node positive. So if your score and recurrence risk were provided based on the assumption that you'd be node negative, while the Oncotype 9 score likely wouldn't change, your recurrence risk might be a bit different based on being node positive. I don't know however how different the node negative vs. node positive scales are for scores in the low range.
Thank you! I definitely didn't see the treatment options before .. very helpful. And thank you for the Oncotype explanation. This has definitely perplexed me. I never knew if the "9" would go up to something much higher. Before my ALND my MO told me I had an > 80% likelihood of additional lymph node involvement. I think at that point (4+ nodes) the Oncotype may not have been valid. I was lucky enough to have none of those additional nodes test positive. He said he would place more weight on the Oncotype from biopsy if I stayed at 3 nodes.
I hate stats, mostly because I too have a hard time understanding. My GP said to me local recurrence usually occurs in the 1st 3 years. As we can tell from our fellow posters here, the distant mets seem to occur years later. Not all but most.
I've played around with the predict tool as I just want to know overall survival. Right now I'm at 92% which is wonderful, but why is my therapy only giving me 2.6% added benefit, yet in years to come the added benefit percentage goes up, but survival goes down (which I realize age has alot to do with that). I was 56 when diagnosed. I don't know my Ki67. Doing 10 yrs therapy adds 1% to OS.
I can never figure out the criteria either. This tool isn't for the "in situ" people? Only an invasive tumor? I have an "in situ" on each side so that's not considered bilateral disease? I think not, but reading that made me ask. TIA
Exactly because of all the recent & continuing GREAT informative posts - I don't want to see the thread disappear. It's a question after all. People can open & read to find the answers - old & new - will it or not? Maybe a bit of a shock will prod them to learn more. Personally this thread has been in my favorites forever. I'm interested in the historical changes of the disease over time & I like seeing Susan's Garden and some of the other older members.
"why is my therapy only giving me 2.6% added benefit, yet in years to come the added benefit percentage goes up, but survival goes down"
The reason why you get added benefit from the therapy over time is because the risk of a metastatic recurrence spans 15 to 20 years (or even longer), so the amount that hormone therapy reduces this risk over 5 years will be less than the amount that it reduces this risk over 10 years or 15 years.
For example, if 10 years of hormone therapy reduces metastatic recurrence risk by 30% over the 10 years that the patient takes the meds, plus an additional 5 years beyond that (i.e. the patient sees a consistent risk reduction benefit for 15 years), you might see numbers something like this:
As for why survival is going down over time, this is because the figures you are looking at reflect Total Survival. As we get older, there are more things that are going to get us. So the numbers you are seeing aren't just Breast Cancer Mortality but All Cause Mortality.
I mentioned above that the Icon view is the easiest to understand. I went into PREDICT and played around with it to come up with results that almost perfectly match the numbers you mentioned (the 15 year numbers are off just a bit). Here are the two views of the same results, the first being the Table view that you were looking at, and the second being the Icon view. I think you will find the Icon view to be much clearer. I've got the 5, 10 and 15 year results.
Lastly, PREDICT doesn't include in situ conditions (DCIS or LCIS) because technically the mortality risk from these conditions is 0%. It is true that the overall mortality rate from DCIS is not 0%, but generally a DCIS patient will have a local invasive recurrence prior to the development of mets. Since PREDICT doesn't measure local recurrences, the model therefore cannot reflect the presence of DCIS (or LCIS).
Edited to correctly name the first view from PREDICT as the "Table view" rather than the "chart view", in paragraph above.
"As for why survival is going down over time, this is because the figures you are looking at reflect Total Survival. As we get older, there are more things that are going to get us. So the numbers you are seeing aren't just Breast Cancer Mortality but All Cause Mortality.
I mentioned above that the Icon view is the easiest to understand. I went into PREDICT and played around with it to come up with results that almost perfectly match the numbers you mentioned (the 15 year numbers are off just a bit). Here are the two views of the same results, the first being the chart view that you were looking at, and the second being the Icon view. I think you will find the Icon view to be much clearer"
As always Beesie, thank you. I did not know that tool is all cause mortality.
This thread is very informative and I bookmarked it soon after I joined this site some seven plus years ago. I notice however, my own perception and interest in prognostic type of information continues to godown as the time moves on. Purely psychological thing I guess. But at this point in my life, I absolutely don’t care which bucket of survival stats I fall under. I guess it’s a good thing. 😆
Here's a question for you, Beesie (or anyone else willing to help me dig into the stats).
As you can see by my stats, I had more than one kind of cancerous or precancerous cells. Five kinds to be exact, including triple negative IDC and ILC. They found seven tumors, spread across both breasts. I also had a single node with micrometastases. My KI67 was 95%. I did BMX and 11 months of neoadjuvant and adjuvant chemo, but no radiation or hormone therapy.
How the heck do I even begin to calculate my reoccurrence risk? I've tried more than once and gave up in frustration each time.
Trishyla, I *think* you go with the most serious one - which my guess would be your tnbc grade 3 IDC. Your chemo is 3rd gen. You could also see what each of them comes out to individually. I don't know if the risk is additive or increases due to multiple tumors of different pathology - that's something I'm guessing we don't have a lot of data about. Did your MO go over recurrence risks at all?
Trishyla, what I'm about to tell you is utterly UNscientific and will probably have Beesie choking on her coffee. But here is how I have pondered things, the things I have taken into consideration when assessing my risk. Or rather, these are the issues I looked at to try and form an overall picture of my 'situation'.
First, I had an Oncotype. 11. This seems to be the high end of the low range. My oncologist felt that chemo would be pointless and more damaging than beneficial in the face of this score. BUt there were other things that I feel (purely personal ) contribute to the picture. My age and menopausal status at time of diagnosis. Overall it seems the younger you are, the worse off you are. Breast cancer seems, in younger women, to sometimes be a different beast. I was not young. I was 53. But I was not in menopause. I was having regular periods. So I wasn't old enough to be on the 'good' side of menopause, but I wasn't exactly young either. So... not sure how to feel about that. AGE was something I looked at. MENOPAUSAL status was something I looked at.Size of tumour was something I looked at. Mine was 2.5 cms. Not small. Larger tumours seem to have worse overall outcomes. (I can hear Beesie rolling her eyes at me, sorry!)Vascular invasion was something I looked at too. My surgeon only found one, lone, pitiful lymph node. She said she looked, she dug, she cut deeper, I had no lymph nodes that showed up and one is not considered a very good sample. She yanked out some vascular type bits just to have something more to submit for testing. The one node was clear. But I have always wondered if she'd got more, if they might have shown cancer? But the pathology report said no sign at all of lymphovascular invasion. This is one thing I considered when trying to decide my situation.
I looked at whether or not my tumour showed necrosis. Necrosis means the cells in the tumour have died off, most likely for lack of food and when that happens the tumour grows and goes off searching for a food supply. This is vascular invasion, when the tumour starts exploring other places to set up housekeeping. I had no necorsis, no invasion. So my tumour was bigger than I was happy with, and I was younger than I could have been, but likewise the tumour seemed pretty happy where it currently was and hadn't apparently gone looking for a new place to live. In trying to figure out how I feel about things, what my 'chances' are, I took ALL of these variables into account. It's a puzzle, put togehter the pieces, step back and assess the picture as a whole. An Oncoscore is a big piece of it but not the only piece of it. Hope this helps. Apologies to Beesie!
Thanks for the very thoughtful replies, moth and runor. I did initially use my triple negative tumor as my guide. With that, taking into consideration my age at diagnosis, 58, my TNBC tumor size, 2.5cm and my lack of node involvement on that side, I had a 5 year reoccurance rate of about 38%.
Taking the oral chemo, Xeloda, reduced my rate to under 20%. Yay! Kinda. With TNBC the likelihood of having a distant reoccurrence, metastasis, is extremely high. So, boo. But your risk after five years drops to about 8%. The same as the general population. Yay?
Which brings me to my current dilemma. I'll hit my five year mark 8/29/21. So then TNBC recedes into the background as a risk But my ER/PR positive cancer will just be starting to gear up for reoccurrence/metastasis. I've refused hormone blockers up to this point because of horrendous side effects, and because they do nothing for my highest risk cancer, the TNBC. I need to know how to calculate my reoccurrence rate from that point forward to see if hormone blockers are worth it. And I have no idea how to go about it.