How many progress to Stage IV?
 

Unbelievably, we in Australia do not collect this data! Numbers for early breast cancer are gathered, but not for what we call advanced. I realise it could be further complicated by those who are first diagnosed Stage IV.
I would be interested in the figures for the US, as they are probably comparable.
Best wishes.... Pam

Re: How many progress to Stage IV?
 

Statistics are not my thing but I found theses stats:

http://seer.cancer.gov/statfacts/html/breast.html

These might be more helpful.

ABC women? Australian Breast Cancer?

Sorry I must not have hit Ctrl C hard enough yesterday. I'll check on some more stats and post those.

Re: How many progress to Stage IV?
 

Thanks "lizbeth, but i think the link has been mixed up - not relevant.....
As a Stage IV person myself, I have learned a few lessons about the unimportance of statistics to an individual. However as a group here in Australia, I think ABC women are marginalised and relegated to being the elephants in a pink bedecked room.
I have an opportunity to talk to a group of trainee peer support volunteers and would like to make them aware of our significance - maybe a bit confronting, but a much needed reality check?
If you have the stats, I would be most grateful.
Regards..... Pam

Re: How many progress to Stage IV?
 

It is estimated that 232,340 women will be diagnosed with and 39,620 women will die of cancer of the breast in 2013.

Survival & Stage

Survival can be calculated by different methods for different purposes. The survival statistics presented here are based on relative survival, which measures the survival of the cancer patients in comparison to the general population to estimate the effect of cancer.

The overall 5-year relative survival for 2003-2009 from 18 SEER geographic areas was 89.2%.

Five-year relative survival by race was: 90.4% for white women; 78.7% for black women.


Stage Distribution and 5-year Relative Survival by Stage at Diagnosis for 2003-2009, All Races, Females Stage at Diagnosis

Stage:
Localized (confined to primary site): Distribution (%) 61%; Five-year Relative Survival (%) 98.6 %

Regional (spread to regional lymph nodes): Distribution (%) 32%; Five-year Relative Survival (%) 84.4%

Distant (cancer has metastasized): Distribution (%) 5% Five-year Relative Survival (%) 24.3

Unknown (unstaged): Distribution (%) 2%, Five-year Relative Survival (%) 50.0%

Re: How many progress to Stage IV?
 

I don't have a direct answer. But from 2003 - 2009 NCI SEER information only 5% are stage IV at initial diagnosis, so about 11,617 women per year have distant metastasis right from the start. We lose 8,794 of these wonderful women within 5 years. Then 2,823 are stage IV survivors.

74,349 women are initially diagnosed with regional, positive nodes. If my math is correct 15.6%, 11,598 of these women will definitely recur and die from breast cancer mets before 5 years.

I suspect some of the remaining 62,750 women will progress to Stage IV, but still be alive at the 5 year mark. I don't have exact numbers but my guess would be between 15 and 20%: Between 9,413 and 12,550 annually.

141,727 women are diagnosed early with localized breast cancer. Of this large group, only 1,984 progress enough to die of breast cancer within 5 years.

If we estimate that 5% of the group would progress to Stage IV but remain alive, that would be 7,086 women annually.

Keep in mind that much of this information in before Herceptin became standard of care for local and regional breast cancer in 2007 or 2008. The preferred standard of care chemo shifted from ACT to TCH. Tykerb, Perjeta and Kadcyla have since been approved. Many of the women in clinical trials are also decreasing the numbers with upcoming targeted therapies and vaccines.

Again, all my numbers for progression into stage IV from local and regional initial diagnosis are purely guesses. I needed to get close to the 39,620 annual deaths and I think my guesses put me a bit below the number.

Maybe someone can remember seeing actual figures and share this with us.

Re: How many progress to Stage IV?
 

If you refer to her2 positives I think not enough time has gone by to gather enough info for this, there's pre and post herceptin which has made such a difference to what use to be a very dire prognosis indeed. I was dx in 2005 but everyone I know that was dx then that was her2+ are still doing well and NED, sadly I can't say the same for other types of bc sadly.

Re: How many progress to Stage IV?
 

Thank you Tricia for repeating my point about Her2 breast cancer.

Actually medicine is making good progress for other types of breast cancer. Subgroups are being divided out of the triple negative (3Ns) into low Her2 expressors, and are in trials for Herceptin, and the E75 vaccine.

Here is a partial list of ongoing clinical trials for 3Ns:

http://www.tnbcfoundation.org/clinicaltrials_prev.htm

and some ongoing studies . .

http://www.clinicaltrials.gov/ct2/re...ancer&no_unk=Y


I'm sure some of the science will go sideways into treating subgroups of we Her2 3+ (high Her2 expressors).

My guesses on progressing don't add up to the 39,620 number who died from breast cancer in 2013. It makes me go hmmmm. . . I'm about 8,000 short. Maybe some numbers come in from women who recur after 5 years, but that should be not be very high.

I'm certainly not making my living from statistics . . .

Re: How many progress to Stage IV?
 

I didn't know I was repeating it 'Lizbeth and was just giving my own reply to PamelaMary on my view of her question, I'm sure your links were interesting but it looked like a little hard work to read it all to me and prefer to comment with a simple answer which said the same!

Re: How many progress to Stage IV?
 

Tricia, we still have not answered PamelaMary's question.

I tried to include all types of breast cancer in my calculation, but am starting to understand how lucky we are to be Her2 3+. I guess I underestimated the amount of recurrence in the triple negative category.

I still don't know how many progress to stage IV. Does anyone know for sure?

Re: How many progress to Stage IV?
 

Thanks again - looks like the issue is indeed hard to pin down! I was interested in all breast cancer, not just Her2+, but that doesn't make things much clearer. Lots here about 5 year survival rates, but as someone rediagnosed after nearly 8 years, I don't think that gives anywhere near a clear picture.
ABC women = Advanced Breast cancer, which is the more common expression in Australia.
Best wishes..... Pam

Re: How many progress to Stage IV?
 

PamelaMary,

Your question was a good one. I took a harder look at the numbers and learned a lot.

Susan G. Komen posted this, but the links to support the numbers are inop:

The most important thing to remember is that survival for metastatic breast cancer is highly variable. Although the average length of survival for women with metastatic breast cancer is in the range of 2-3 years, this is an average and does not predict how long any one person may live.1 About 25 percent of women with metastatic breast cancer live more than five years after diagnosis, and some women live 10 or 20 years beyond diagnosis.2 It is also important to note that these survival estimates are based on women diagnosed before some of the newer treatments for breast cancer were available. Current treatments may mean improved survival for women diagnosed today.

Re: How many progress to Stage IV?
 

Cancer.org has a pdf from 2011:

Here is an excerpt that helps me see where the recurrence trends are:

What factors influence breast cancer survival?
Based on the most recent data, relative survival rates for women
diagnosed with breast cancer are:
•
89% at 5 years after diagnosis
•
82% after 10 years
•
77% after 15 years
Caution should be used when interpreting long-term survival
rates since they are based on the experience of women treated
using past therapies and do not ref lect recent improvements in
early detection or advances in treatment.

http://www.cancer.org/acs/groups/con...spc-030975.pdf

You are in the 7% that recur between 5 and 10 years, 5% recur between 10 and 15 years.

I can see why the vaccines are so important. Reducing recurrence rates by half would affect a large number of women. Lets hope we see at least one available within the next 3 to 5 years.

and Herceptin for Low expressors will likely have a positive reduction.

Re: How many progress to Stage IV?
 

I read somewhere that disease free survival for her2 positive BC was 79% at 4years. So if they are only counting early stage bc then that means 21% progress - since her2 is so aggressive they may have some reoccur after the 4yrs but it probably isn't significant
this is consistant with what my onc told me which is that her2 diagnosis is about 10% worse overall survival then her2 neg of the same stage - so that matches up with elizabeths 89%
at 5yrs

Re: How many progress to Stage IV?
 

I have seen one of the mbc organizations state that 30% of early stage will progress. I can't remember which one though or how they came to that number.

I don't think it is good to base any calculation on 5 year survival rates. I was diagnosed after 5 years and have seen many women on other sites who were diagnosed after 5 years.



Laurie

Re: How many progress to Stage IV?
 

I found this statistic in a NYT article from Jan 2011. As others have cautioned, these stats probably include women that did not receive Herceptin. It is also not limited to HER2+ cancer.

http://www.nytimes.com/2011/01/18/health/18cancer.html?pagewanted=all&_r=0

Quote:

Of women who are given a diagnosis of breast cancer, only 4 percent to 6 percent are at Stage 4 at the time of diagnosis, meaning the cancer has already metastasized, or spread, to distant sites in the body. But about 25 percent of those with early-stage disease develop metastatic forms, with an estimated 49,000 new diagnoses each year, according to the American Cancer Society.

Re: How many progress to Stage IV?
 

Re: How many progress to Stage IV?
 

Hi Debbie,
I myself am a peer support volunteer for this government funded organisation. All the volunteers have been diagnosed with breast cancer, most at an early stage. Over the years, others have been rediagnosed and continued to contribute. Of course, some of us have died. I believe one of this new intake is already stage IV.
We try to support women of all stages, also helping them access information.
The 2 points you raise I agree with completely, and want to emphasise. I also think people need to understand the fact that most stage IV women live with continual treatment, none of which is pleasant. (!) However for many of us, life is good.
There are also complex financial and emotional issues to be dealt with - probably far more that i would have time to cover.
Thanks for your contribution..... Pam

Re: How many progress to Stage IV?
 

A good list from http://mbcn.org/ link

13 Facts Everyone Should Know about Metastatic Breast Cancer




1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org.

Re: How many progress to Stage IV?
 

VballMom and Debbie,
WELL SAID! V - I especially find #6 on your list to be infuriating! The mammogram I had 4 months prior to my finding a nearly 4 cm mass and a dozen "bad" nodes... found nothing! By contrast, a friend's mammogram found a tiny mass but sadly her BC had already spread to her bones.

I'm not saying early detection is bad...
but the message that it saves lives is overstated, at best.
Research is what will save lives!
Research, and new treatments for metastatic disease.
Nobody, absolutely NOBODY dies of breast cancer that's still in their breast. (see #1 above)

I absolutely believe that immunology is going to be key to curing metastatic disease...
but we're all but shut out of the research being done.
I sometimes feel like the "vaccine crowd" of researchers have abandoned all hope of helping those of us with metastatic disease.

I'm not saying they're wrong to do the research the way they are...
I'm just expressing sadness and frustration at being left out - written off even...
as though it's too late for me anyhow.
(NEWSFLASH!! No it isn't! I'm hoping to be here a long time yet!!)

Well... that turned into a bit of a tirade! Sorry 'bout that.
Love to all!
Denise

PS - sisters who are vaccine pioneers... THANKS for doing what I can't do, to help that research along!

Re: How many progress to Stage IV?
 

Hugs, Denise! You deserve a good tirade once in a while.

Re: How many progress to Stage IV?
 

I think this is an important dialogue for us.

But honestly does it take an Aussie to point out the obvious.
Why are we not tracking this information?

So, we fail to track exactly who progressed, what stage, what characteristics, etc? And we are going to cure cancer.

Hmmmm . . . no wonder it is taking so long - everyone's dissecting cells down to receptors and pathways, but no one is looking at the landscape of the "Big Picture".

I really think SEERs should track how many patients progress to Stage IV each year, and their characteristics.

and I think I should contact them and ask . . . now that is a good idea.

Re: How many progress to Stage IV?
 

Excellent idea, 'lizbeth! But our national breast cancer lobby group has had no luck with this issue....
Pam

Re: How many progress to Stage IV?
 

I was told by my onc

* That roughly 3 out of 4 recurrances are metastatic.
* That we have no idea who will recur and who will not,
* That most people with Her2+ disease recur within 2 years from diagnosis
* That recurrences can pop up even after 25 years

So if you are initially diagnosed with Stage 1 disease, your statistical 5 year risk of recurrence is about 2%, and your risk of mets is almost none, according to these stats. However, because of the characteristics of the tumor, this risk could be higher.

In my case, it was about 20%. By doing radiation therapy and hormonal therapy, my statistical risk was reduced to about 10%. After 9,5 years, my residual risk of recurrence is somewhere around 6%.

Having said that, if I had recurred earlier, I would have been one of the unlucky few. So all those statistics would not have meant a thing. It gave me some peace of mind, though, to go for those therapies that gave me better odds. It felt like I was doing something to fight the cancer. Ofcourse, if my type of cancer was fuelled by yet another, unknown pathway, it would not have made a difference.

For someone with a Stage 3 diagnosis, that 3 out of 4 number would be scarier. But you could still belong to the lucky 1 in 4 club and live happily ( or not so happily) ever after. Thus a person who was initially diagnosed with stage 1 could die from mets, while a person with a Stage 3 diagnosis could be cancer-free for the rest of his or her life.

We need to find out more. I saw a short article in a Dutch newspaper this morning, stating that a lot of new information was gathered on which genes drive which mutations that start the process of developing cancer. I haven't been able to find a link to an English article and I don't know how trustworthy that info was. I'll let you know when I find out.

Jacqueline

Re: How many progress to Stage IV?
 

Sorry, I made a mistake here: for Stage 1 the risk of dying from Breastcancer is about 2% in the first 5 years. Risk of recurrence is higher. I need to look that up.

I found an online calculator that may shed some light: http://www.lifemath.net/ However, I have no idea whether this is trustworthy info. I just googled it, and as we know, not everything online represents solid info.

Love

Jacqueline

Re: How many progress to Stage IV?
 

Jacqueline, the lifemath.net calculator does not take Herceptin into account.

Re: How many progress to Stage IV?
 

http://www.cancer.org/acs/groups/con...spc-033876.pdf

I found 2012 statistics at the American Cancer Society's website.

How Many Cancer Survivors Are Alive in the US?
An estimated 13.7 million Americans with a history of cancer
were alive on January 1, 2012. This estimate does not include
carcinoma in situ (non-invasive cancer) of any site except uri
-
nary bladder, and does not include basal cell and squamous cell
skin cancers. The 10 most common cancer sites represented
among survivors are shown in Figure 1. The three most common
cancers among male survivors are prostate (43%), colon and rec
-
tum (9%), and melanoma (7%). Among female survivors, the
most common cancers are breast (41%), uterine corpus (8%), and
colon and rectum (8%).

Re: How many progress to Stage IV?
 

Re: How many progress to Stage IV?
 

http://www.cancer.org/acs/groups/con...spc-027766.pdf

Female Breast
New cases:
Breast cancer is the most frequently diagnosed cancer in women worldwide with an estimated 1.4 million new cases in 2008. About half of these cases occured in economically developing countries.

Female breast cancer incidence rates varied internationally by more than 13-fold in 2008, ranging from 8.0 cases per 100,000 in Mongolia and Bhutan to 109.4 per 100,000 in Belgium (Figure 4). This may in part reflect low screening rates and incomplete reporting in developing countries. Rates were generally high in North America, Australia, and Northern and
Western Europe; intermediate in Eastern Europe; and low in
large parts of Africa and Asia (with the exception of Israel).

Deaths:
An estimated 458,400 breast cancer deaths occurred in women in 2008. Breast cancer is the leading cause of cancer death among womenworldwide.

Global trends:
Between 1980 and the late 1990s, breast cancer incidence rates rose approximately 30% in westernized countries because of changes in reproductive patterns and more recently because of increased screening.
26

However, incidence rates in the United States decreased between 1999 and 2006, in part due to lower use of postmenopausal combined hormone therapy.27-29

Similar trends have also been noted in other Western countries
including the United Kingdom, France, and Australia.
30-32

Breast cancer incidence rates have been rising in many African and
Asian countries including Japan, where rates increased more than 140% in the Miyagi registry during the time period 1973-1977 through 1998-2002, and India, where rates increased 40% in the Chennai registry between 1983-1987 and 1998-2002. 33

Reasons for these rising trends are not completely understood but
likely reflect changes in reproductive patterns, obesity, physical inactivity, 34 and some breast cancer screening activity. Although
breast cancer incidence rates continued to increase through the
late 1990s, breast cancer mortality over the past 25 years has been
stable or decreasing in some North American and European
countries (Figure 5). These reductions have been attributed to early
detection through mammography and improved treatment. 26

Re: How many progress to Stage IV?
 

Pamelamary, 'Lizbeth, Debbie, Denise, Vballmom, and all,

Thank you for an interesting discussion. I do want to chime in.

Stage IV is an elephant in the room, and it does rain on all the happy talk about early detection and "winning." But cause marketing is more about marketing than the cause, in our society we do whatever it takes to keep the big corporations dribbling out little philanthropic pittances, often to supposedly solve problems they caused in the first place. Cure is good, but prevention is far better. I personally want to live as long as I can, so I hope they do keep coming up with new drugs for people like me, but what I really want is accountability and meaningful action to stop what's causing this stinkin' epidemic, especially in young women.

Here's something we haven't covered yet: As a person who was Stage IV at diagnosis, I feel I have a mission to tell everyone, not just people diagnosed with cancer, that we are not in a dress rehearsal and no one gets out alive, and I think I should model that. My goal cannot possibly be "live forever and never die of anything" because, well, it's impossible. So if I'm not trying to rack up as many years as possible (why? To get my picture in the paper on my 121st birthday?) then it's a good idea to put some thought into what, for me, constitutes a life well lived. Then live it. Starting now.

Finally, people just naturally love to know their odds, but aren't there a whole lot of things we just do because we must? Divorce rate of 50%? Why would anyone bother getting married? But we do. Chances of dying in a car accident? Lower than they were, but still pretty darn high, yet we voluntarily climb into those death traps and speed down the road. So the question is, if you knew exactly what the right number was for progression to Stage IV for people with HER-2 positive breast cancer, would that change anything? If so, then that's the really interesting question. If bad odds would convince you to have a better, fuller, more satisfying and meaningful life in the time you have left, then I suggest you should be doing that anyway. After all, your individual odds of living forever are zero.

Reminds me of something Edward Abbey said about those "I'd rather be fishing" bumper stickers. He said if he were living that compromised an existence he'd be ashamed to advertise it. Good Lord, if you'd rather be fishing than just go do it.

And, just as an aside, I agree that five year survival statistics are close to useless. Also, I have known since soon after I was diagnosed that SEER doesn't track progression to Stage IV. That's probably because I was extra specially interested in Stage IV, under the circumstances.

Re: How many progress to Stage IV?
 

I've heard the elephant in the room statements from the Stage IV.

I suppose since I hang out on the board more than with the Pink campaigns I see cancer differently. Still, to me, it is about winning. I just hate to lose - especially quality and quantity of life, and not just my life, to cancer, and more importantly cancer treatment.

Personally I love numbers. I have a degree in Finance. I worked in Accounting. I'm a pilot. So numbers are comfortable to me. It helps me to quantify the significance of an event or situation.

Looking at the numbers from this conversation I realized that even with the progress of Her2 breast cancer - this is not the same with some other breast cancers. Which is why we need to start encouraging the low expressors of Her2 to join clinical trials for Herceptin, and the Herceptin and E75 vaccine. I think that we can help keep women from progressing into the stage IV club.

We patients are not powerless, if we define and promote what we want with treatments - then we are more likely to receive them. And we need to promote enrollment in clinical trials so that treatments will become available faster.

Re: How many progress to Stage IV?
 

Don't we need more numbers? If Stage IV women were tracked properly, perhaps we would eventually gain insight into metastases. And of course, it is metastatic disease which kills. Early screening and new treatments may in fact distort figures, making the situation look more optimistic than it it.
Our 5 year survival rates sound so good, but women are still dying and nobody quite knows why.
Hmmmmmmmmm...... Pam

Re: How many progress to Stage IV?
 

I was thinking the same. The stage IV information should be tracked in detail. I think it could open up addition insight into who is dying, and why.

With the new treatment approvals I think we need to start looking at trends. With new treatments the percentage of patients with certain receptors or genetic pathways should start declining.

Perhaps someone is tracking this - and the data is not published.

With the 5 years - it has been a measuring tool for years.
It is something we can compare new numbers with to historic numbers. It is not entirely without merit. We know almost all early stage women live to 5 years. So early detection is critical.

To be honest I would have found my cancer at an early stage had I shown up for a mammogram at age 40. I just put it off for a few years. Buy 44 it was multi focal and regional.

This is a great conversation. I hope that we all can continue a dialogue and express our feelings and opinions on this important topic of progression to stage IV.

Re: How many progress to Stage IV?
 

Re: How many progress to Stage IV?
 

Pinkgirl,

I think you hit right on what this thread is about. It started with how many progress to Stage IV, and that in our group we were not familiar with who, if anyone, was tracking the information.

Then it progressed to the idea that it would be a good idea to track. I wasn't thinking beyond the typical categories that are currently being used, HR+, HER+, Stage 0, 1, 2, 3, 4.

But you bring up good points.

I hope this type of information that you brought up is being tracked in American Cancer Society latest study, the CP3.

Your last question about the 70/30 gets to the truth. I'd like to be able to identify and sub categorize this. From looking it appears to me a large subset of ER+ and triple negatives are the majority of the reoccurences, plus a smaller subset of HER2 3+.

This is why I'm on board with getting the word out about Herceptin for low expressors of Her2, and the Herceptin E75 vaccine trials. And I'm enthusiastic that Slamon is working on something for the ER+.

Having a dialogue, learning and finding a way to make a difference is part of what this thread is about.

Re: How many progress to Stage IV?
 

Pink
Just want to go on the record with this...
my Mom did indeed have big hips.

;)

Re: How many progress to Stage IV?
 

And among those gazillion factors, there may lie a cause?.... and a cure?
Big hipped mommas sounds promising.
Pam

Re: How many progress to Stage IV?
 

Haven't updated the list for a while. But thought it might be relavant to some of the questions here (#278). The exact initial stage is listed inside the ( ) if known (info is gleaned from members signature/postings):
http://her2support.org/vbulletin/sho...+stage+sisters

Re: How many progress to Stage IV?
 

Jackie,

You are amazing. That list was a heck of a lot of work.

You put NCI, NIH, ACS, SEERS and everyone else to shame by informally tracking our own statistics.

I'm still reading the thread - it is really long.

Re: How many progress to Stage IV?
 

Re: How many progress to Stage IV?
 

I looked again at the statistics and realized that the last years for collection of information was about 2007 or 2008. The most recent years information is an estimate. So diagnosed cases are not an actual number since 2009.

Look at the graphs for breast cancer, the 5 years is from 2001 to 2007. For any cancer too, not just breast.

No one seems to be tracking anything. All this money going for cancer research and we don't even know for sure how many people have been diagnosed.

And so I see an even larger challenge to get tracking for recurrence, which would help to identify where progress is being made, or not made in the "War on Cancer."

How are we going to get busy doctor's to report recurrences?

Maybe by setting up a program through ACS, like when a patient is first diagnosed. And the patient can self report? Both initial diagnosis and recurrence?