METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month, 10 days instead of one, to let our voices be heard! This is the third post in our series.
I’ve been living with metastatic/stage IV breast cancer (MBC) for seven years. During that time it has become abundantly clear that the facts associated with MBC are not only rare and hard to find, but that they are often not corroborated and/or not current and/or misquoted and/or illogically used. Often, MBC facts are just plain non-existent. So this year for Metastatic Breast Cancer Awareness Day x 10 Day 3, I am asking those who actually collect the data .. or could collect the data … or should collect the data… or who are tasked with reporting the data… to do what is necessary to bring clarity and accuracy to metastatic breast cancer statistics, starting with the five topics below.
I used to occasionally see the number diagnosed annually as being 49,000. Recently the number has been harder to find. So I called the American Cancer Society (ACS), the National Cancer Institute (NCI), Surveillance, Epidemiology and End Results (SEER) and the Centers for Disease Control (CDC). I said I was looking for the total number diagnosed each year including all those that progressed to stage IV in a given year plus the number of persons who presented at stage IV in their initial diagnosis. Each organization genuinely tried to assist, but after searching their records, each concluded that the number diagnosed in a given year is not collected … at least not at the national level.
One organization suggested individual states might collect the number, but the few states I checked did not, which meant that even if the others did, no accurate national count could be derived through those means. The one statistic I obtained during those phone calls was the number of those who initially presented at stage IV in a given year. That figure was 5% (about 10,000) women. They had no statistic for men initially presenting at stage IV. As to the count of 49,000, it is my understanding it was a count for breast cancer patients progressing to stage IV each year. Therefore, the total number of women diagnosed annually with MBC is about 59,000
(49,000 + 10,000). NOTE: This is only one estimate. Another estimate is contained in the section below titled “How many are currently living with MBC?”
Would it not be much easier and far more accurate to simply require medical facilities to enter every patient’s MBC diagnosis (male and female, progressive and initially diagnosed) into the national database? If this were done, we would have accurate, non-ambiguous numbers that would be instantly available. If we did this, an easy data search would yield not only the correct number being diagnosed, but also the correct number currently living with MBC, the number of years a patient survived with the disease, and other invaluable data. Since this is not being done, questions persist, such as the following.
Why do we almost never hear of the men? Over 2,000 men are diagnosed annually with breast cancer and over 400 are reported to die annually of the disease. (Keep in mind that we don’t really have any valid numbers at our disposal, but I’m using what I have.) You have probably seen the number of predicted deaths for this year shown in numerous writings as 39,620. But that’s only part of the story. Year after year when the number appears on the American Cancer Society’s website is says: “In 20XX, approximately 39,XXX women are expected to die from breast cancer.” Did you notice the word “women” at the end? Many people never notice it. And when the number is repeated, that critical word is almost always dropped so that all you read is that there will be 39,XXX deaths from the disease in 2013. This incorrectly implies that 39,XXX is the total number of deaths.
METAvivor has consistently stated we are losing over 40,000 Americans each year to MBC. We are … as far as the predictions can tell us. If you read the full American Cancer Society report each you’ll find: “In 20XX, about 2,XXX men will be diagnosed with breast cancer and 4XX men will die from the disease.” For 2013 it is 410 men bringing the prediction up to 40,030. The total prediction has never gone below 40,000. And even a prediction should be accurate to the extent possible.
The overall death count is not the only count from which the men are missing. I called around. One organization told me the male community was considered too small a sub-group to be considered “significant” for factual reporting … as though the men dying of this disease did not have enough challenges to face … and as though we were actually getting factual reporting. No one with this disease is insignificant and no one deserves to be left out of the count.
Occasionally we read that “150,000″ (no gender designated) are living with metastatic breast cancer. Recently, a few people have been using 155,000 or even 160,000. The original number may have come from the 2006 Living Beyond Breast Cancer publication, Silent Voices (Musa Mayer, M.S., M.F.A. and Susan E. Grober, Ph.D.). Based on data collected in 2005, it carries the quote on page 8 that: “…at any given time, a low estimate of 150,000 and a more reasonable estimate of 250,000 American women are facing the ongoing challenges of living with metastatic (breast) disease.” Silent Voices also includes the estimate that “every year between 73,000 and 86,000 American women discover they have metastatic breast cancer.” Please note that this is the combined total of those who progress to stage IV and those who initially present at stage IV.
If Silent Voices is indeed the source of the “150,000″ number, it is not clear why the “low estimate of 150,000″ has been the number continually repeated rather than the “more reasonable estimate of 250,000″. Even more perplexing is why the number remains static year after year. As seen in the previous section, the number of persons diagnosed annually with MBC may be as low as 49,000. The more likely number is 59,000 and could be as high as 73,000 to 86,000 (Silent Voices). Even using the low number of 49,000, the metastatic breast cancer community is still growing by 9,000 people each year (49,000 diagnoses minus an estimated 40,000 annual deaths = 9,000 net gain). Thus if the size of the MBC community in 2005 ranged from 150,000 to 250,000 and it is now eight years later; and if we have had a net gain of 9,000 per year for 8 years; then we have increased by 72,000. This makes the current size of our community anywhere from 222,000 (150,000 + 72,000) to 322,000 (250,000 + 72,000).
If the numbers in Silent Voices were more accurate and 73,000 to 86,000 (no gender designated) are being diagnosed every year. Then we are growing by at least 33,000 (73,000 – 40,000) per year or as much as or as much as 46,000 (86,000 – 40,000) each year. This would give our community a size range of anywhere from 414,000 (33,000 x 8 + 150,000) to 618,000 (46,000 x 8 + 250,000).
One final note on the number 150,000: Some of the very organizations that state we are living longer and longer are the same organizations that report our overall count year after year as 150,000. The count can only remain at 150,000 if for each new diagnosis, there is a corresponding death. They may wish to have it both ways, but they cannot. Regardless of which MBC diagnosis count you use, the number 150,000 is clearly wrong.
When I was diagnosed I was told I had a five percent chance of being alive in 5 years. So I was delighted when I found a statistic online suggesting that on average, my odds might actually be 20%. Shortly thereafter a visiting nurse told me it was 27%. More recently I’ve seen estimates ranging from 23.4% (SEER) to 15% (American Cancer Society) to less than 10% (Eastern Cooperative Oncology Group in conjunction with Northwestern University Medical School). It seems no one has a good handle on the five year statistic, likely because the information is simply not collected. The one statistic that has remained fairly constant is the median survival. For some time now that has ranged from 18-24 months to 19-30 months. Not very encouraging.
Originally I used the numbers on the American Cancer Society website. But I questioned these because in addition to numbers from previous years, they listed the number of people diagnosed and succumbing to the disease in the current year. It was clear that no one could know those numbers in advance. So I checked. The ACS told me those numbers are only predictions. So once the final numbers are in, are the previous “estimates” corrected? No.
I asked where I could obtain accurate numbers. They referred me to SEER data. On the SEER website I found everything listed in terms of age-adjusted incident rates per 100,000 people. I learned that age-adjusted numbers are derived at using the following formula:
This was totally out of my league, but they gave a definition. “An age-adjusted rate is a weighted average of the age-specific (crude) rates, where the weights are the proportions of persons in the corresponding age groups of a standard population.”
Okay … still not clear; however, using this formula, SEER had arrived at the following for the most recent set of years (2005-2009) for which statistics have been calculated for breast cancer: Approximately 0.0% died under age 20; 0.9% between 20 and 34; 5.6% between 35 and 44; 14.8% between 45 and 54; 21.4% between 55 and 64; 19.9% between 65 and 74; 22.0% between 75 and 84; and 15.5% 85+ years of age. In total this was 23.0 per 100,000 women per year.
As best as I can understand it, these percentages reflect a race, gender and age calculation for a geographic area that is somehow representative of the US population so that they can judge the odds that I, a person between the ages of 55 and 64, will die of breast cancer.
Ok … I just want simple numbers … ones I can grasp … ones I can understand. Clearly the numbers exist or the calculations could not be made. And clearly the complicated formulas are not understood by a significant number of people visiting the source … the SEER website. So on a website clearly meant for the public, why don’t we find numbers that the public, on the whole, can understand? I called. I asked. They said I couldn’t have the numbers. There was no clear explanation as to why.
To all those with MBC: I do not wish to depress you with this article, but rather to encourage you to advocate for better data collection with more clarity, accuracy and attention to detail in reporting.
To those who collect, tabulate, analyze and report the data. It is my fervent hope that you will move to collect exact numbers that will be reported in an accurate, straight-forward and inclusive manner. Perhaps in your minds it is all the same breast cancer whether it is stage 0, I, II, III or IV. It is not. There is nothing like a lifetime of treatment and non-stop medical appointments with the overarching, constant threat of death to make you realize that you live in a completely different world than the pre-metastatic community.
The MBC community is growing; it is gaining a stronger voice every year and it is very determined. Statistics or no statistics, the community is pushing the MBC agenda forward. It would, however, be an enormous help to be able to do this with complete and accurate statistics.