How many progress to Stage IV?

[Pamelamary]

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

['lizbeth]

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.

[Pamelamary]

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

['lizbeth]

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%

['lizbeth]

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.

[tricia keegan]

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.

['lizbeth]

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 . . .

[tricia keegan]

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!

['lizbeth]

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?

[Pamelamary]

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

['lizbeth]

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.

['lizbeth]

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.

[roz123]

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

[Lauriesh]

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

[Shirley]

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

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.

[Debbie L.]

Pamelamary and all,

As I understand it, here in the US we do not track this either. SEER (our cancer registry) tracks stage at initial diagnosis, and death. But not recurrences where an "early" (stage I-III) breast cancer progresses to stage IV (so not the timing for when that happens after the early diagnosis, nor the length of time women live with stage IV disease). So although we can say how many women are diagnosed each year (with some details about that) and how many die -- SEER does not give us any information to know how many women are living with advanced breast cancer (nor how long they live with it). This is (understandably!) upsetting to those living with advanced breast cancer. I'm pretty sure that your discussion of feeling marginalized, and the mention of the pink elephant in the room, resonates strongly with women in the US (and probably everywhere).

I've also seen the previously-quoted statistic of 30% of all breast cancer progressing to distant mets (stage IV). But that includes all stages, all subtypes -- and so it is so generic as to be nearly useless to an individual woman. But perhaps useful when attempting to describe the big picture.

Can you tell us more about the peer support people you'll be talking to? Who will they be supporting? Are they themselves living with advanced breast cancer?

If we could choose what we'd want people diagnosed with breast cancer to know about advanced disease (and about people living with advanced disease) what would we want to say? What do YOU (Pamelamary, and everyone reading this) want to say?

I'd say that two of the common misconceptions I hear fairly often, and that I'd like to see education about, are:

1. Metastasis (stage IV disease) means someone will die really quickly. Or alternatively, if that person does not die right away, then it means they must be cured, and are fine, and we can forget about their breast cancer.

2. If you do everything "right" (whatever the person believes that is -- mammography, eating right, living right, being a good person, thinking positive, yada yada), then breast cancer will not become metastatic -- that only happens to people who didn't get their mammograms, didn't exercise, ate too much of whatever, yada yada.

I think the most important thing for those not familiar with breast cancer in all its forms to understand is that it can happen to ANYONE. That we don't know how to prevent it happening to ANYONE. And that (despite incredible expenditure of effort and money) we have not made nearly enough progress in knowing how to keep it from killing those who it does happen to. I think that between falsely-reassuring messages about the lifesaving wonderfulness of mammography, and nearly-daily media reports of "breakthroughs" in treatment -- most people (both lay public and breast cancer survivors) do not take the issue of breast cancer research seriously enough.

I could say a lot more (smile). But I'll wait and see if there is ongoing interest in this discussion.

Debbie Laxague

[Pamelamary]

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

[vballmom]

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.

[NEDenise]

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!

[vballmom]

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