What is our prognosis, anyway?
When I was diagnosed about 2.5 years ago, my (nationally regarded) breast surgeon at UCSF told me my risk of recurrence was "about 20%". Her colleague, my oncologist, said it was 30%. I didn't know to ask, but figure now they were talking about a 5 year risk. If I'm using these tools correctly, Cancermath tells me the 15 year mortality rate for my diagnosis given the treatments I've had is 17.9%, while Adjuvant Online says that both mortality rate and relapse rate are about 25% (I was surprised that it was the same). (Interestingly, Adjuvant Online also says that 5 year mortality rate WITHOUT any treatment other than surgery is about 40%). Dr. Google is the most unkind, turning up stats between 40 and 60% - I know data is old, but the 40% stat is the one that I seem to see most frequently on this board as well. Curious what others' doctors have told them about prognosis.
I should note that contrary to the content of my post, I don't think about this obsessively (at least not anymore!), but I am curious. I am also familiar with the argument that an individual is not a statistic, and that our individual chance of recurrence is 0 or 100. But I would be interested in others' perspectives on our risk as a group.
Comments
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Adding a comment so my diagnosis and treatment info shows up, since that's relevant to the stats I posted above. -
Did you have oncotype testing? I did. My oncotype score was low placing my risk of recurrence at 10 years at around 10% This was based on 5 years tamoxifen. My hope is that 10 years of an AI and regular exercise will lower that number. Especially the recurrence risk after 5, 10 and 15 years. I also looked at predict survival calculator and arrived at risk of recurrence 20% at 10 years.
I also would love to hear from others
Elizabeth
I'm also thinking about going on a statin. I'm overweight and know this is a risk factor for recurrence. -
Oak, I went a little nuts at one point trying to research this, and like you I turned up all kinds of stats, some moderately encouraging, others most definitely not.
I was 48 at DX, I am now 50 and no recurrence so far (meaning I "passed" the first major danger zone). However, I take the view that my prognosis is probably not great in the long term. I hope that aggressive treatment, exercise, decent diet etc. will hold the beast at bay for a while, maybe a long while if I am lucky. I fully expect it to come back, unless I am in a plane crash or have some other major calamity befall me before it has a chance.
So, I try to enjoy myself and lead a good life that I can be happy about. My #1 priority is that I do not want to die bitter. I also keep hope alive, because I figure that the longer I can live a healthy life, the better the chances that they will come up with some new treatment in the meantime. -
Im going to live a long life and die of something other than breast cancer! That's the prognosis I have given myself and I believe it!! -
Elizabeth - unfortunately I did not have oncotype done. When my path report came back with 6 positive nodes (surprise! none of them showed up on my MRI), it seems that chemo was a given and they didn't do the test. I wish they had - would be nice to have that information.
Momine - what is the danger zone you're talking about? Looks like we were diagnosed at the same time (suck it June 2011!), I was 39 then, and am now 41. Is there something significant about 2 years? Or is it related to passing the 50 year mark? At my last oncologist visit, I asked whether my risk was less now that I'm 2 years out. Her response was that with ER positive cancer, there really is no cliff where risk declines significantly. Rather, that there is an incremental reduction every year. She said that 50% of ER positive recurs after the 5 year mark. But I like your response better! -
Liz - I like that best of all! -
ooooh, i like this topic, and hope it grows. being stage lll is scary and special. i know my docs told me before TX's, that i was still curable. did i believe them? NO! but i try too. at this point, i am just trying to have some fun while dealing with all this! i would rather die biting, than bitter! agree with ya there, Momine! -
My Onco uses the word cure all the time. I don't like to use that word because we all know breast cancer is a sneaky thing. I do trust him tho and his optimism is quite infectious. Although guarded, I believe more of us will survive and die of other things. I'm very optimistic of the new treatment choices and am so thankful for Herceptin that treats my HerNeu. We ladies are certainly warriors. Hugs to all! Hang in there girls. Let's kick cancers butt!! -
Kathec..I believe you're curable! Herceptin is a game changer for we HerNeu girls!!! I'm going to bite right with ya!! Ha -
Not only did my onc not give me a prognosis, but I really don't know exactly what 'stage' I am. I had a 9cm tumor & at least a couple nodes that showed up positive from needle aspiration. Given this, they did chemo prior to surgery (to try to shrink the tumor - which it did). The ultrasound tech saw a lot of suspicious nodes & by the surgery (when I had a ALND), 2/14 tested positive - so I've settled on 5 - but that's a guess (and really I think it was more). Also my path showed some grade 1, some grade 2, and a very small amount of grade 3, so I've settled on Grade 2.
Some of the stats calculators won't even let you enter in 9cms, it's "out of the acceptable range" - which doesn't make me feel that great. In any case, I am going to live to 90 and die in my sleep. And so are the rest of you. : ) -
Ziggypop - my final tumor size was 5.7 cm, also out of the acceptable range for all the tools, so I know how you feel on that front. However, it apparently was largely DCIS, with several smaller IDC tumors contained within. I don't really know what that means for prognosis, if anything. I've read some places that it doesn't matter what the mixture of DCIS/IDC is - only the aggregate tumor size that factors in. My surgeon feels differently. -
Yes ziggypop!! -
Elizabeth, I'm curious about why they did the oncotype testing on your cancer--I don't hear about it much with stage III and I always figured it wasn't done on our stage because there really isn't a chemo decision to be made, but now you have me wondering!
As for prognosis, my onc didn't volunteer it, but when I asked she printed out the report for me: a nice even 2/3 chance of being alive in 10 years. I felt a lot more "over" cancer until some recent scares, but so far all is good and I'm hoping to keep it that way (no off to stop procrastinating about exercising today...). -
Regarding the DCIS/IDC question, in my path report the TNM classification is written and the T-classification refers to IDC only. My IDC was 2cm, but there was a lot of DCIS around it. Together, the two components extended to more than 3.5cm. Still the TNM classification was T1c. -
AgentMo - in the U.S. I believe your "T" would mean "tumor" whether IDC or ILC, and the "N" would be "node".
Oaktownmom - next onc visit you should ask what significance is your IDC inside DCIS -- I think many of us would like to know that one. I swear we have to be scientists just to figure out path reports !!
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AgentMo, the TNM classification refers only to the invasive portion of the cancer. Non-invasive portions are referenced in the pathology narrative.
I started with a 10cm ILC tumor on the left, shrunk to 2.2 with chemo. It was only at pathology that they found DCIS and the Paget's of the nipple, but they do not count that as "worse," so to speak, because those components are non-invasive.
So, at dx, my clinical stage on the left was T3N1M0 (they knew I was node-positive) and after chemo and surgery the pathological stage is pT2N3M0 (all 15 nodes were positive). It's goofy, though, because one might think that a roughly 75% shrinkage ought to be worth more than one notch. -
Year, I know that the T refers to the size of the tumor. I have not given my whole TNM. My answer was meant for oaktownmom. Thanks anyway. -
oak town, my oncologists said that the average time for mets for us stage 3 ladies is 2 years ..( guessing that is what Mommie is referring too )....YIKES ! I figure it is going to take me a full year to grow a head of hair, get back eyelashes & a possible toe nail loss & regrowth.. our dx look alike, only you are so young, I am 58...so, my thoughts are do I go crazy the year after that, spend my retirement $, travel...or somehow stay cool I believe I will be the lucky one. I love ziggypop theory, dying in sleep at 90...sadly I no longer believe it. My oncologists does not use the word cure, at least not to me...she talks about doing all the treatment and not worrying about what you cannot control...I give myself a stomach ache all the time just working over in my mind...Then I feel horrible, because so many children have worse cancers, & they are tough.... Only 1 week post last chemo, so still have rads... -
Holeinome - Your oncologists shouldn't have told you that - recurrences tend to happen more within the first two years, but not everybody who is stage 3 progresses to stage 4. They shouldn't use the word 'cure' but that is only because they can not know if you a cured. You might have been cured the second the tumor and nodes came out of your body.
My onc is exactly the opposite (I love him,I came home to take care of my dad because he had terminal cancer & then I was diagnosed - by chance he became my onc too). I'll ask him something and he'll say "Why are you worried? Did I tell you to worry?" Me - "No, but.." Him - "I'll tell you if you need to be worried. You're doing great." -
This article gives better stats for us HER2+ gals. I was depressed when Dr. gave me the stats when I was diagnosed. I am glad they are finally updated things. -
This article gives updated stats for us HER2+ gals. -
I've been told that the point about 2 years for ER+ BC is that even with today's modern PET/CT, etc, some breast cancers diagnosed as Stage III are actually Stage IV, but the metastases aren't large enough to show up yet. If that were all there was to it, then the recurrence statistics should barbell if ER+ BC statistically recurs more often post 5 years: high for the first 2 years to account for unknown Stage IV, then a drop in years 3-5, then rising again. But they don't. There's also the issue of Tamoxifen (and I suppose AI) resistance, which apparently can arise at any time, that probably explains some of it.
If drugs like Afinitor show promise in dealing with this issue, then perhaps the nature of recurrence statistics might change. Things are changing fairly rapidly, so any statistics you find are probably somewhat out of date.
What always surprised me about Cancermath, was that they had enough statistics on mortality without any treatment to show the recurrence line as they did. I'm grateful I was not in that boat. -
Kathleen, that's an interesting point about the recurrence/stage IV but small issue. I would think grade would also play into it with grade 1 having a later spike and 3 an earlier one, but that's just a guess on my part.
And, for untreated cancer, I've seen stats from data up to 1965 or so before modern treatments, so that kind of thing may be the source. Makes me really glad to live in more modern times with things getting better all the time.
Also, Shelly56, AgentMo's information about IDC/DCIS for T and staging is a US thing, too. My path report put me at T2 based on the size of my largest tumor, ignoring the second, smaller invasive tumor and the DCIS between (also ignoring the extranodal invasion) and my onc talked about it like that was the standard way. Maybe there are different standards from facility to facility, but I really hope not because that would really mess up the statistics! -
It's all so confusing. I could not get a prognosis from my oncologist or my breast surgeon. I've asked several times each, and after a bunch of mumbo jumbo, I got nothing. So I went to see Dr. Dicke at Arlington Cancer Center. He told me that he believes I have a 50% chance of a distant metastasis within 5 years. I then called my radiation oncologist and asked her what she thought. She said she believed I had a 40 to 50% chance of distant metastisis within 5 years, essentially agreeing with Dr. Dicke. I guess that's why the other docs didn't want to talk about it. As far as survival rates go, I don't know anything, but I do know that if I get a metastases what those numbers are.
I know what my numbers are now at least. I haven't decided whether I want to live my life differently on account of them. -
ziggypop, sorry, I did not word that correctly. she ( oncologist ) did not suggest that we all were headed to stage 4...she definitely uses positive language and reminds me that I have done everything to stop the spread. My SIL dx was very scary, stage 3, over 20 positive nodes.... Healthy as can be 9 years later... -
My onc said for ER+ stage III, the risk of recurrence stays steady (and he moved his hand sideways, palm down, indicating a straight horizontal line) up until about 9 years then it falls off.
He told me in his opinion I have a greater than 50% chance of recurring, because my Caris report indicated that AC+T was not likely to have benefitted me. Fortunately he's giving me some more chemo and other stuff that might help reduce my ROR. -
Tectonicshift My onc said basically the same thing.
For myself, I don't think in the long term, and right now I'm NED. My tumor was 5.2 cm IDC with Lobular features. MY onc NEVER uses the word cure. He tells me it's his job to worry about keeping it from coming back. So.... if I had been diagnosed at 39 or my 40's I might worry more about it coming back in 10 or 15 years, but I was 59 when diagnosed and in 10 or 15 years if it doesn't come back there is a whole list of other things that can make me face my mortality. I like the idea of dying in my sleep at 90 tho.
Oceana
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tectonic & Oceana, what your oncologists have told you Is more reassuring, than my 2 year mark, I will stick with your advice and try to stop my obsessive worrying...
Tectonic, I have never heard of a Caris report, I am still on bc101.... -
Though there are many things that no one agrees on remember that there are some proven things you can do to reduce your risk. Keep your bmi under 25 and get regular exersize. I have read somewhere that you can reduce risk up to 30%, so if I do the math right and your risk is 40%, you can drop it to 28%.
My MO never talks numbers at all. I have a lot of anxiety about this so I guess its just as well. -
Oak, my docs are particularly antsy the first 2 years. They basically expect that if the original treatment did not do what it was supposed to do, which happens, then you will see recurrence/mets within the first 2 years. Making it past the 2-yr mark, or so they told me, means that the treatment worked as expected.
ETA: There is also the issue of possibly being stage IV at DX, but undetectable by CT, MRI etc., as someone else mentioned.
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