Will 30% of Early Stage (1-IIIA) go on to metastasize??
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susan..I think 5 year survival data will always seem murky. That said, at 5 year intervals you can look for trends. Trends give a better snapshot of where the numbers are heading. I think when we quote statistics we need to be careful. We need to know when the data was collected. Sometimes by the time the data is collected and crunched, it is no longer relevant. It is like reading the morning paper. By the time the ink dries on the paper, the news is old. Same thing with these 5 year survival rates and this 20-30% recurrence numbers. How can appreciate these numbers when new game changer treatments are being approved and used? Last year Perjerta was approved for early stage HER 2 positive disease. Will the 5 year survival rates get a big boost 4 years from now? More than likely. Probably.
The big issue that I see is that despite all of this population based screening, 15% of diagnoses are Stage IV. That is the most stubborn statistic. There hasn't been a trend in that area. The number hasn't budged.
Is there a better way of collecting data so that we can honestly see the trends sooner? Probably not considering the nature of breast cancer. Many more breast cancers recur in the first few years. Many more Stage IV sisters are living longer. And, breast cancers like mine recur decades later. So, the question that demands answering is how do we get a better handle on exactly which early stagers are more likely to recur? I think the way to go is with developing more evidence based trials that are based on genomics. We are getting there slowly with the few genomic tests that we have currently on the market. I think a decade from now we are going to be relying more heavily on these kinds of genetic studies leading us to more individualized care. I think future sisters will be in a better position to know what their personal risk of recurrence will be thanks to genomics. Now won't that be nice?
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I have yet to finish reading through the literature about what percentage of stage i through iii people recur. On a more personal level, I have to say that whatever the number, we need to focus funding and research on stage iv/metastatic breast cancer, because that's the kind that kills, and even a stage i who follows all the recommended treatment and does everything else possible to stay healthy can go there. The neglect of stage iv/metastatic statistics is deplorable. Looking only at five-year survival is dishonest. Next year I will be a five-year "survivor" (if things go well), BUT... And yes, this is all "rather negative".
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On a related note, here's what always confuses me. I hope I can explain myself.
Theres always congratulations when a woman, after being dx with an early stage bc, reaches a five year point after the treatment. So I guess I used to think that if a woman is going to have a recurrence of breast cancer, it would happen within five years. And that making it five years means much less chance of recurrence. Or it means that you're home free, i.e., cured. So I thought that was the reason for the congratulation. I think that many in the general public look at it that way, too. But yet, a recurrence could happen at any time. Percentages are low, but the specter is always there for many women.
It also doesn't seem like there is data kept as to how long out from the original diagnosis does a recurrence happen? Do x number recur at year one, x at year two and so on?
And there's the case where a woman diagnosed with early stage breast cancer reaches a five year mark with no recurrence, she is counted as a "survivor" but the same woman could possibly progress to stage iv sometime after the five years. Is she taken off the survivor list? I don't think so.
I'm in that 6 to 10 percent diagnosed stage iv from the start. I consider December 22 this year as my five year mark since that's when I found the lump. Let me say, I am full of deep appreciation to have had these years, but five years! My God. It is the drop of a hat. I can't imagine being overjoyed to hear, oh, wow, yeah, you'll live five years. Um. I want so much more that that.
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Shetland and Divine Mrs. M -
Yes, and yes. I think you've both hit on a couple of the most important issues.
I do think that all the focus on five year survival gives the general public a very skewed perception of how deadly bc can be. I know it does a disservice to every woman diagnosed with it. And yes, it IS dishonest. That's not negativity - that's truth and I really appreciate it.
Any woman here who's honest with herself has to look at stage iv and realize "there but for the grace of God go I - for now."
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Black humor cartoon on all this
https://xkcd.com/931/
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TheDivineMrsM most recurrence happen in the first 2-5 years. That's why 5 years is such a big deal. But as the years go on the risk goes down but still can happen.
Everyone who is a survivor regardless of stage.
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I totally get what you are saying Divine!. I've always had issue with...but it's 98% blah blah that you'll survive 5 years. Woop dee doo! That really doesn't mean much to me when I'm 43 and have a child still at home. Maybe if I was 102 five years would sound great.
I'm actually hitting my 5 year mark next month. And yes, I'm thrilled I'm "cancer free" (as far as I know). But I know the risk is still there. Maybe even more so since I'm highly estrogen positive. I don't live in fear. I just am a realist I guess.Lago... the 5 year mark is not as big a deal for ER positive women, My MO told me that too. Also some info from Dr Google."More than half of the recurrences of ER+tumors occur 5 years or longer after diagnosis and surgical removal of the primary tumor, and some patients suffer recurrence after more than 20 years (10–12). This is in sharp contrast to ER− tumors, for which the recurrence rate peaks at around 2 years but diminishes to a low rate after 5 years (13). Current prognostic markers often focus on and are reasonably good at predicting early recurrences within 5 years (14–17), but the risk of late recurrences remains poorly predictable." Source (Edited to add: The article I just quoted is actually a really interesting read! ... and in it's conclusions states: "As mentioned earlier, roughly 20% to 40% of patients with ER+ breast cancer eventually develop distant metastases and half of these events occur 5 years or later after diagnosis of the primary tumor.")
I personally don't like the "survivor" label. Maybe because Komen and company have shoved that word down our throats so it leaves a bad taste in my mouth? I had a cancer diagnosis. I've made it 5 years..woo hoo... and hope to make it many more. I don't feel like a "survivor" any more than the average bear. Shrug.
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It is also important to note that the 98% of early stage will survive five years statistic DOES include DCIS, so that statistic is skewed by inclusion of a diagnosis that is stage 0. While it may still be a true statistic it doesn't suss out invasive breast cancer from non-invasive. That number goes down if those with non-invasive cancer are eliminated, SEER data shows a 15% drop to 84% five year survival for those with cancer with a localized nodal spread, and a precipitous drop at 5 years to 25% for those with mets. All of these statistics are also different if you look by age, ethnicity, geographic location, etc. To me it is virtually impossible to make generalizations.
susan - I am with you on the survivor thing - just passed 5 years at the end of Sept. While I am happy to have made it to five years, I feel no differently now that I am passed it - I am also highly ER+ and am taking nothing for granted.
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Does anyone know if these numbers/percentages are similar for other cancers? I have a friend who has/had colorectal cancer that is a higher stage than my BC. But after chemo, radiation, surgery, and bit more chemo, he seems to have been declared "cured." I feel like he's had a much much worse experience, a more serious health threat, than I have had. Yet, at the same time, it seems like he is done. While I still have this sword of Damocles hanging over my head??
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I don't know, Professor. I have a cousin who had surgery and chemo for colon cancer 10 years ago and there doesn't seem to be any threat that it might return - but that's strictly anecdotal.
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If you look at the SEER data for colon cancer it's not that great.
The BC statistics are actually much better. I didn't look for long-term survival stats on colon cancer, though.0 -
My dad's lady friend had colon cancer about 3 years ago, treated w surgery and chemo, was told she should be fine. She recently found out it was back and had spread to her liver. Had surgery to remove cancer in both her colon and liver this time. She's now doing chemo again.I think many people w lots of types of cancer also face the fear/risk of recurrence.
It's not just us that's for sure but our stats are a bit more complicated IMO. There is a lot of difference in survival and recurrence rates for those w early stage hormone positive/her- disease than those w triple negative or her+, especially when you are looking at numbers 20 years out from time of diagnosis. There have been major changes in the treatment of these cancers and the survival rates for these subsets since 1995. I think, I may be wrong, that colon cancer is colon cancer, but breast cancer, even early stage BC, has lots of subtypes that affect survival rates (IDC v ILC v IBC, hormone positive v negative, her + or negative) and changes in treatment in the last 20 years make looking at stats from those diagnosed so long ago rather unreliable at best.
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SusansGarden, thanks for posting the quotes above, about the risk of late recurrence (after five years) for ER+. I was thinking I needed to dig that up but you had already found it. While triple negative bc has a higher recurrence risk for the first five years, after five years that line on the graph dips under the ER+ line. The ER+ risk continues for decades, with half of ER+ recurrences happening after five years. What's the point? Researchers and statisticians need to follow bc patients for more than five years to get an accurate picture. They need to gather and publish statistics about early stage bc that metastasizes, to inform research. We need to figure out (in long-term studies) how to predict which of the ER+ people are likely to recur late and treat accordingly. (Note that the Oncotype DX only addresses the ten-year risk.) Here are a couple articles for anyone who is interested.
Biologic markers determine both the risk and the timing of recurrence in breast cancer http://www.ncbi.nlm.nih.gov/pubmed/21597921
Deep time: The long and the short of adjuvant endocrine therapy for breast cancer http://jco.ascopubs.org/content/30/7/684.full
Not wanting to be gloomy, but if we want progress, the truth needs to be told.
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The type of early stage breast cancers does make a big difference in terms of the recurrence statistics. Another example are the Luminal B types. I think I am Luminal B and in my case the risk of recurrence in the first 5 years is dramatically higher than for the Luminal As. However, at the five year mark, Luminal B recurrence risk drops to that of the Luminal A. And so, some have more to celebrate than others at the 5 year mark.
At the same type, for those who have had Oncotype or Mama Print testing, the individualized risk score may have far greater meaning compared with the overall national averages.
I really appreciate this thread. While statistics are only numbers, I think many of us banter the data about in an effort to find any source of comfort we an hold onto.
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If I get a late recurrence say between 5 and 10 years or later I am hoping we will have much better treatment and dare I say it a cure!
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Survival statistics for common cancers: http://www.cancerresearchuk.org/health-professiona...
Doesn't say which of stage 1 will go on to metastasise but it's surely rare for the cancer to kill you unless it's spread?
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As someone with a solidly Luminal B tumor, I'll celebrate passing five years mets free knowing I'm now at the same risk as Luminal A gals. The Oncotype score gives rates for ten years, so I'm always thinking about mets probability within that time frame. I'm sure that in five years as the ten year mark approaches for me there will be more research to discuss and for ER+ gals we'll know whether or not we should continue AIs or not.
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MsBrompton, that is the only bc that kills, that which has spread to other parts of the body. That is the definition of metastatic breast cancer. Ninety eight percent of those with metastatic bc succumb to the disease
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Okay, another question. It is clear that breast cancer that has not metastasized cannot kill, because the breasts are not necessary for life. But cancer that originates in organs that ARE directly life-sustaining could kill without metastasizing, right? Like pancreatic cancer? Lung cancer can kill without metastasizing, isn't that right? I am learning so much here.
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I couldn't say for certain, but I would guess that except for perhaps brain cancer, most cancers that kill have metastasized. Now whether or not the mets are the cause of death, it would depend on the original organ. Maybe someone else knows more.
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I think the vaccine is HER positive BC only.
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Exactly Kay. My low malignant potential ovarian cancer didn't metastacize but was so huge & it the ascites that accompanied it had all my hollow organs displaced to the paracolic gutters & put tremendous pressure on my stomach, heart and lungs to the point I was cachetic, had malnutrition, heart arythmia and developed pulmonary embolism. It almost killed me and wasn't even truly malignant
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Further to the discussion of survival and stage, the following study may be of interest. Please note the study was conducted in a population in the Netherlands, and reflects treatment standards prevalent there during the periods in question. The Netherlands appear to have a particularly high level of screening compliance.
Press Release:
http://www.bmj.com/company/wp-content/uploads/2014...
Article, entitled "Influence of tumour stage at breast cancer detection on survival in modern times: population based study in 173 797 patients"
http://www.bmj.com/content/351/bmj.h4901
Accompanying Commentary, entitled "With better adjuvant therapy, does breast cancer stage still matter?"
http://www.bmj.com/content/351/bmj.h5273
Screening programs and diagnostic methods that could reliably detect all breast cancers when smaller and node negative would be good to have.
BarredOwl
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Can anyone point me to research on recurrence time that addresses tumors that are both ER positive and Her2 positive? Most studies I've read separate those 2 factors--ie reflecting that tumors that are ER positive are at risk for a longer period of time for metastasis and that Her2 positive the risk is highest in the first few years and then levels off. So what about tumors that are both? Does my question make sense?
Kendra
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kcal2013
Try this http://www.nejm.org/doi/full/10.1056/NEJMoa1406281
And this http://www.bmj.com/content/351/bmj.h4901
The first paper fits your profile, though you are on slightly more treatment than these women. Of 406, only 6 had recurrences (and quite a few didn't finish chemo so that was probably why).
Being HER+ and ER+ is better than only being HER+ because you can take tamoxifen, which will reduce your risk of recurrence further. The second paper shows that since Herceptin, being HER+ does NOT reduce your survival.
You have a very early cancer, you've had it removed with prophylactic mastectomy (so did I!), AND you're on all the best chemo. Herceptin is really really effective. You will be FINE.
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Thanks for the links Ms Brompton. I appreciate those.
However, I'm sure you didn't mean it this way but you sounded fairly condescending to me--especially emphatically stating that I will be fine. This whole thread is testament to that NO ONE can be told 100% positively that they will be fine. And I don't appreciate being told that by someone who is not my doctor and knows nothing about my health. There are so many factors involved in bc recurrence. Plus I'm 2 years out from diagnosis, doing just fine and not actually terribly worried about recurrence. I only find the intricacies of this disease interesting--particularly those of early stage since that is what I was. I know there are several regular posters on this thread that keep up with research, which is why I thought to ask my question here.
Kendra
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Kayb, thanks for sharing what your doctor told you about the ER/Her2 being independent variables. That is exactly what I was curious about! I'd wondered if those 2 factors influenced one another in any way. Thanks!
Kendra
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kcal 2013 so sorry I didn't mean to sound condescending. Of course none of us are 100% sure we'll be fine, BUT should we focus on the tiny chance of a bad outcome or try to be positive? I guess this is the 'negative worries' thread so I shouldn't be too upbeat in here?
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To me, one of the most interesting points in the Dutch paper that BarredOwl linked is that conservative surgery resulted in better outcomes. Could it be that less extensive surgery resulted in less inflammation and other responses that promote metastasis? (Cf. the toradol discussion on these boards.) Or that the radiation given after lumpectomy zaps undetectable cancer cells in the first level lymph nodes? Or were there different patient characteristics that the researchers didn't account for? It seems like this should be part of the discussion when patients are choosing between mastectomy and lumpectomy.
Edited to add:
I was referring to the conclusion where it said "more conservative surgery is more favourable". I hope my post did not give the impression that this one study provides a definitive answer, or that I was advising anyone to choose their surgery based on it. The question of lumpectomy vs. mastectomy needs to be very individualized and carefully discussed with one's own doctors. While the authors of the study did adjust for age, stage, and adjuvant therapies, there may be other factors that went into the surgery decision for each patient that could have had an effect on their eventual outcome (breast density, family history, any number of things). That is why I said other patient characteristics might account for the finding. Still, when a person's doctors advise that either choice is fine, maybe clues from such studies could help with the decision-making. A theme of this thread is Asking Questions, and that is what I am doing.0
