Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Right lago... the small (oYo) boobs thread! ... seems like forever ago, yet just yesterday at the same time.
How the heck are you doing? Congrats on your 5 years. 0 -
Divine Mrs M: what a knuckle-headed thing for your co-worker to say. People so often have to justify tragedy (e.g., "her father died of lung cancer, but he was a heavy smoker!"). I'm sure I've said equally stupid things in the past, in my quest to believe that I'm immune to health issues, etc. Going through this experience has been humbling ... Sometimes shit just happens!
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All the statistic crap is worthless, at least for me. My risk for breast cancer, after taking their question survey, was 5%. I started period at 14, stopped at 50, two live births, breast fed, mother no cancer, grandmothers no cancer, grandfather on one side lymphoma, two great-aunts had old age breast cancer, one died at 92 and one at 99, 55 (yes 55!) cousins, no breast cancer, only one male with colon polyps (pre-cancerous). I think all the medical industry does is play an educated guess, have figured out some treatments that MAY work for a percentage of the population, and since that is the best they have, we get it. Mind you, I'm not complaining, I took the chemo, etc. and I hope I never see the beast bitch cancer again.
Will I ever metastasize or not as a stage 1? I think it's a complete crap shoot, and nothing I really have any control over. I saw some women posting about not dyeing their hair too close after chemo and I'm like wtf, as if dying my hair gave me breast cancer. I mean, I'm not going to be out eating McDonalds every day, but I really feel it is a total crap shoot - for whatever reason, some cells go abnormal and at that moment conditions are ripe for them to grow and bam, it nailed me.
I'm not going to spend my life worrying about what I could or couldn't have done, and if I ever go metastatic, I will confront that terrible demon when I have to. I eat well, exercise, avoid stress, do everything I can, and in my heart I really don't think those things matter. If cells got out and they are going to get me, they will. But I mainly do exercise, diet, etc. to feel better physically and if there is any mental component to disease, hell, I'll throw the happy positive thoughts in there too. Can't hurt.
One of my favorite sayings when looking at medical trials, studies, etc. is that correlation does not equal causation. The "this person ate grilled meat, and got cancer, therefore grilled meat causes cancer" thinking is complete bullshit.
I'm a glass half full person - I'll be alive until I'm dead, and then it won't matter. In the meantime, I am enjoying the hell out of every single day.
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Bravo Italychick!!!
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Thanks Susan. Congrats to you too. Doing great!
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Well said italychick!!
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Great post, Italychick.
Regarding the title of this thread, what I have read is that 30% of ALL lesser stage cancers progress to stage iv. (And I've read it's been revised to 28%). And I think that creates a different statistic from the statement "30% of STAGE I progress to stage iv". I can't say that I've read of any kind of data being kept on each individual stage and the percentage of progressing. Then with my math skills, which are crude at best, but I would say, well, just to divvy it up, there are three stages we're talking about, so a rough guestimate might be 10% of stage I, 10% of stage 2 and 10% of stage 3 progress. And surely, it doesn't equal out quite that way. But it does tend to lessen the percentage for stage one gals.
Statistics, oh my. They can be skewed so many ways.
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TheDivineMrsM, I am so glad you posted here. I follow some of the stage 4 forums and see the struggles the women are having (Romansma comes to mind immediately), and I never want to invade the stage 4 forums, but I want you to know that the women on those forums are some of the bravest people I think I will ever "know." And in my heart, I am pulling for every one of you every day. I just wanted to get that out there, you are all wonderful, special people, and you are figuring out all the treatments that the rest of us will benefit from if we ever have to join you.
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I am so sick and tired of blaming the bc victim. Finding fault is so useless, women really do more than any others to take care of themselves for family. I personally would do anything for my children, and I plan on being there for them as long as I can.
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TheDivineMrsM I think we need to look at at individual risk rather than overall risk. I'm stage IIB I was told my risk of recurrence for my diagnosis and age was 16%. I would assume that someone who is stage IIIC and much younger would be much higher. Also remember that number includes people who choose to do no treatment, only part of the treatment and/or alternative treatment that may be from a quack money grabber.
But when you look at all the numbers it's best to look at "chance on not having a recurrence" While 30% sounds high 70% will not recur sounds pretty damn good. For me it's 84%
Maybe this thread should be named "70% of all early stage will not metastasize"
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That's a very good way to put it, lago, what is each woman's "individual risk".
The reverse of the title to the 70% statement is great for inspiration. I think the 30% reoccurrence is stated to point out that there is still no cure. Because some people are being sold a bill of goods, in other words, deceived, into thinking early detection equals a cure.
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Lago I'm not sure if the 30% includes people that chose no treatment or went alternative? I'm wondering if those people never saw a traditional doctor again ...they could likely never be included in the official "went on to metastasize" statistic.
I do like the 70% never see BC again glass full way of looking at it.... but because BC is so "pink washed" I run into so many people that assume if they get their mammograms, have no family history, etc then they are free and clear. Awareness still needs to be raised... but I think it now needs to focus more on Stage IV and finding a cure.
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or a vaccine
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I don't want to get this thread off track, but I wanted to second what Italychick said, DivineMrsM. I am not a praying person but I have set aside a little time each day to hold the women from the Stage IV boards in my heart and in my thoughts. I am bowled over everyday but the unbelievable grace and courage I see on those boards. I actually have become a little bit of a MBC activist because of it.
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What you said above SusansGarden, got me thinking. In the way, way back of my file is some official looking government paper (at least it looks that way to me, I'm likely wrong and it's just for office use or something) that had a little section on it that says "Protocol observed" with a check box and line for a physicians signature. Below that another one saying "Protocol followed" with the same thing. This kind of makes me think if you don't follow protocol, somehow it's cross-referenced when you die and not included in statistics if the answer is "no". I wonder.....I'll have to ask someone. Now I'm curious. Any doctors here that could answer?
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ITT = Intention to Treat versus Protocol Violators after randomization. These are individuals who had exposure to a particular treatment regimen and then for various reason are dropped from a clinical trial.
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Thank you Cp. Very informative! That was some heavy reading. My brain is mush. I'll have to figure out how this correlates. I've had a file with the same clinic....over 20 years. That file is thinned periodically, but that "sheet" on the back is ALWAYS there. Actually it's turned into 3 sheets now. It must be kept for a good reason. I've never been in a clinical trial either, so I know it had nothing to do with my compliance of a trial. Lots to mull over and very interesting. I wonder if I'll ultimately be a "statistic" or my file will be junked when I'm gone:)
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Italychick and Professor, thank you so so very much for your kind words, thoughts and prayers, for me, for all of us at stage iv.
Last month I put together a letter to send to the editor of my local newspaper about how the pink ribbon campaign has veered off course from the goal of a cure. I wanted to include some statistics; I don't usually focus on them too much. I did a bit of research to get my facts straight, and it was insightful. That's why this particular thread's subject line caught my interest, because it is mentioned in my letter, which will be printed in this coming Sunday paper.
I learn from you ladies, too. I so very clearly still remember first coming on the boards in early 2011 and reading many posts by you, lago. You just came across as intelligent, gorgeous and classy, making your way through the rough terrain, leaving some paths that I could follow. It was a huge inspiration to me.
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Awe so sweet. Glad I could be there for you.
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This is a rather negative thread. I can't make everyone's fears disappear (I have them myself), but I'd like to observe that the origin of this "30% of women with early BC will get stage IV" came from a charity that does research into stage IV. The statistic has no sound basis and the charity has a clear conflict of interest: if we think we're going to go on to stage IV we'll raise money for them!!!
As someone in this thread has already said, "28% of women with stage IV BC started with stage 0. I, II or III" is NOT the same as "28% of women with stage 0, I, II or III will get stage IV".
Say there are 100 women with BC, and say 10 of those women eventually get stage IV. Of those 10 women, 3 were diagnosed with stage 0, I, II or III while 7 had stage IV at diagnosis. But 90 women never go beyond the other stages! I made those figures up, but I hope they illustrate the fallacy being perpetrated.
Another observation. In these fora, I have discovered women (misguided in my view) who are taking nothing but herbs, vegan food and positive thinking for their BC. They have rejected chemo, radiotherapy and surgery. If anyone's going to progress from stage 0 to stage IV, I fear it will be those unfortunate women.
UK breast cancer rates are similar to US and Australia/Canada. This website from Cancer Research UK is pretty good:
http://www.cancerresearchuk.org/health-professiona...
I know it only gives five-year survival rates but it's a bit more positive than some of the figures being exchanged here.
Hope this helps.
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NEW CASES: The number of new cases each year of metastatic breast cancer is unknown but consists of those initially diagnosed stage IV and those who had early stage breast cancer and have a metastatic recurrence:
• Approximately 6-10% of new breast cancer cases are initially Stage IV or metastatic. This is sometimes called "de novo" metastatic disease, meaning from the beginning. [NCI SEER data analysis 2000-2005] [ACS Breast Cancer Facts & Figures]
• It is estimated that *20-30% of all breast cancer cases will become metastatic.[O'Shaughnessy, J. "Extending Survival with Chemotherapy in MBC" The Oncologist 2005:10]*NOTE: this statistic if from a 2005 study. Herceptin became standard care in 2006 for all early stage HER2+ followed by Perjeta for HER2+, early stage. This is a 10 year old statistic and it's only estimate
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Hi:
Back in mid-August of this thread (page 13 of thread), there was discussion of a recent Medscape article which sought to track down the origin of this 30% statistic. Regarding the O'Shaugnessy paper, it states (bold emphasis added by me):
"The primary source for this declaration is a 2005 CME review on metastatic disease pulished in the Oncologist by prominent medical oncologist Joyce O'Shaughnessy, MD, from the Baylor University Medical Center in Dallas.
"Despite advances in the treatment of breast cancer, approximately 30% of women initially diagnosed with earlier stages of breast cancer eventually develop recurrent advanced or metastatic disease," Dr O'Shaughnessy wrote.
But there is no reference for this 30% claim.
Nevertheless, the O'Shaughnessy review appears to have become the mother lode for the 30% statistic, mined repeatedly by academics, nonprofit organizations, and industry."
The quoted link is active, and there does not appear to be a supporting citation in the surrounding text.
You can see the original MedScape article (August 18, 2015) by googling its title:
The Mystery of a Common Breast Cancer Statistic
At page 3 of the article, the small study by the American Cancer Society (ACS) which yielded the "28%" number is described. In this thread in mid-August 2015, the methodology and limitations of the study yielding the revised 28% statistic were discussed.
Regarding the result of the ACS study that "28% of the women who died of breast cancer during that time period had localized disease at diagnosis" and what it means, I suck at math, but I believe the sample numerical exercise above from MsBrompton illustrates a good point. I believe WarriorWoman was correct when she noted:
"I keep looking at the statement - "28% of the women who died of breast cancer during that time period had localized disease at diagnosis." It doesn't say that 28% of early stage cancers metastasize. Two very different things."
[Edit: Put another way, the measurement by ACS (on a percentage basis) of the former, is not a measurement of the latter (i.e., How many with "localized" disease at diagnosis progress to Stage IV).]
BarredOwl
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Does this statement, found on another website have much truth to it?
• Up to 30% of early stage breast cancer patients will have recurrences, as early as a few months and up to 15 years or longer after initially being diagnosed. When breast cancer comes back, it spreads to many other parts of the body, including bones, liver, lungs, and even the brain.
Replied JHU's Breast Center Reply
10/5/2015 this is true however it is how the word "early stage" is being used on other websites. it includes all levels of stage 2. stage 2 can have tumors up to the size of 4.9cms and also positive nodes.0 -
123JustMe ~ that is the quote that is currently on the Susan G Komen site (that I linked in my original post above). This is why I wanted to bring up this subject and have this discussion. The "up to 30% early stagers will have recurrences" statement is wildly spread and often with no link or disclaimer to how they actually define "early stage".
As lago pointed out, Herceptin has been a huge game changer preventing some early stagers from progressing to Stage IV. It will be interesting to see what future data/statistics tell us.
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I had asked about the 30% before, and received ths in a pm from a member of the boards:
What's important to note is that the "30%" figure does not include Stage 0 (DCIS). The data for DCIS is separated out and is not included with any of the tables on invasive cancer. Often I see women on the board mention the "30% of early stagers" stat and specifically state that this includes Stage 0 but it absolutely does not. Since I've spent so much of my time on this board in the DCIS forum, and this this stat is so wrong for DCIS (and so scary for them) I thought I would provide this important clarification.
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http://www.medscape.com/viewarticle/852202
"Secondly, certain cohorts of patients are achieving astonishingly good outcomes," say the editorialists. "Women with small, node negative breast cancers now have a five year survival rate close to that of the general population."
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Here is the full text BMJ article on which the editorial is based. I love looking at graphs. How about that 101% relative survivability for DCIS? Large tumours or lots of nodes still not so good.
http://www.bmj.com/content/351/bmj.h4901
Lots of hot links in the references. #3 is a similar type of study using the data from the BC (British Columbia) Cancer Agency database and tumour bank.
ETA after looking at the Supplementary Data section - ILC apparently has better survivability numbers than IDC at least in the Netherlands, good to know.
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kathy...I think this study dispels the idea that 30% will go on to metastize. I think the takeaway message is that going forward, we will see even better numbers due to newer treatments such as Perjerta.
http://www.ascopost.com/issues/december-1,-2014/optimizing-her2-therapy-in-early-and-advanced-breast-cancers.aspx
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Thanks Divine for the clarification.
Voraciousreader...Maybe I'm missing something, but I didn't see anything in that ASCO post that would dispel the idea? It sounded like promising developments in HER2 treatment though.. ... and regarding your earlier quote...yes I think it's great that early stage has a "5 year survival rate" equal to the general population...but that just means they are still alive...I would assume it doesn't account for those that have gone on to Stage IV but are still "living". That would be a completely different picture.
Kathy 044...looking at your link I noticed they state under Procedures: "Local recurrence and occurrence of distant metastases were not registered by the cancer registry" So again, they may have x amount still in the category of "survived" but how many were now Stage IV and living with a terminal diagnosis? Why does it seem to be hard to find info on how many early stagers go on to Stage IV? It boggles my mind that they choose not to track this better.
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