How many progress to Stage IV?

['lizbeth]

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.

[Pamelamary]

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

[Lien]

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

[Lien]

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

[vballmom]

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

['lizbeth]

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%).

['lizbeth]

Breast (Female)

In 2012, it is estimated that there were more than 2.9 million
women living in the US with a history of invasive breast cancer
as of January 1, and an additional 226,870 women will be diagnosed.

The median age at the time of breast cancer diagnosis is
61 (Figure 2, page 4). About 20% of breast cancers occur among
women younger than age 50 and about 40% occur in those older
than 65 years. The treatment and prognosis (forecast of disease
outcome) for breast cancer depend on the stage at diagnosis, the
biological characteristics of the tumor, and the age and health of
the patient. Overall, 60% of breast cancers are diagnosed at the
localized stage (Figure 3, page 5). Screening for breast cancer
with mammography detects many cancers before a lump can be
felt and when they are more likely to be localized stage.

Treatment and survival:
Surgical treatment for breast cancer usually involves breast-conserving surgery (BCS) (i.e., lumpectomy or partial mastectomy) or mastectomy (surgical removal of the breast). The decision about surgery is complex and often difficult for women.

Research shows that when BCS is appropriately used for localized or regional cancers, long-term survival is the same as with mastectomy.2

However, some patients require mastectomy because of large or multiple tumors.
Women who undergo mastectomy may elect to have breast
reconstruction with either an implant or with a skin or muscle
flap of tissue moved from elsewhere in the body.

Most women treated with BCS do not choose to have plastic surgery. Fifty-seven percent of women diagnosed with early stage (I or II) breast cancer have BCS, 36% have mastectomy, 6% have no surgical treatment, and about 1% do not receive any treatment
(Figure 4, page 6).

In contrast, among women with late-stage (III or IV) breast cancer, 13% undergo BCS, 60% have mastectomy, 18% have no surgical treatment, and 7% do not receive any treatment (Figure 4, page 6).

Treatment may also involve radiation therapy, chemotherapy,
hormone therapy (e.g., tamoxifen, aromatase inhibitors, ovarian
ablation, and luteinizing hormone-releasing hormone [LHRH]
analogs), or targeted therapy. Radiation is recommended for
nearly all women undergoing BCS, and approximately 83% receive it.3


Radiation therapy is also indicated after a mastectomy in certain situations.
The benefit of chemotherapy is dependent on multiple factors,
including the size of the tumor, the number of lymph nodes
involved, the presence of estrogen or progesterone receptors,
and the amount of human epidermal growth factor receptor 2
(HER2) protein made by the cancer cells. Women with breast
cancer that tests positive for hormone receptors are candidates for treatment with hormonal therapy to reduce the likely hood that the cancer returns.

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

['lizbeth]

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

[Mtngrl]

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.

['lizbeth]

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.

[Pamelamary]

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

['lizbeth]

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.

[PinkGirl]

I don't think it is possible to get a meaningful statistic for
recurrence. There are a gazillion factors to consider and then all the
different combinations of these factors.

There are all the stages, receptors, lobular, inflammatory, her2 status etc. etc. Then there is the environmental stuff and the lifestyle stuff. How could the statistic be meaningful if one person who advanced to stage 4 was
originally dx. stage 2 and they drank lots, smoked cigarettes, lived
on sugar and had no health insurance or family support ... and another
person was dx. stage 3 and lived on cauliflower, exercised, drank
wheat grass juice, had insurance and a wonderful supportive family.

Then there is family history, stress, whether you had your treatments
on time because you had neupogen shots or had some treatments
delayed because your counts were low. Or if you are left handed
and your mother had big hips.

If there was a statistic that was 70/30, how would you know
if you were going to be in the 70 group or the 30 group? I'm
really confused by this thread.

['lizbeth]

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.

[NEDenise]

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

[Pamelamary]

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

[Jackie07]

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

['lizbeth]

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.

[Debbie L.]

I agree with everyone. How can we measure success (or failure) if we're not tracking recurrences? It goes completely against logic. Maybe it's a hold-over from the days when the time between recurrence/death was short enough that it seemed irrelevant. But those days are LONG gone, thank goodness.

On NBCCs facebook page today, they express the same concerns: https://www.facebook.com/StopBreastC...52223448188266

I'm going to ask there (NBCC's facebook page) what we as individuals can do to encourage SEER to change policy and begin collecting this information, and I will post here if I find out anything.

Debbie Laxague

['lizbeth]

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?