A response to the report: Study estimates number of U.S. women living with metastatic breast cancer

BY CJ Corneliussen-James


There is a “new” report that has been put out to clarify and update numbers for the metastatic breast cancer community. In reading it I was incredibly discouraged. I have previously blogged twice on the numbers associated with MBC. What progress have we made? Judging by this NCI press release … none. The article seems to have merely consolidated information that has appeared over the past 12 years.

In particular, I offer the following:

The report says that women are living longer with the disease; it goes on to state that breast cancer patients are only catalogued when first diagnosed with primary breast cancer and again upon death. The reader is cautioned that it is too complicated to identify the metastasis date. The date is right there in black and white in every single patient's medical record. Just ask that the progression be reported. They do that with primary breast cancer. Why not with metastasis? The excuse is irrational.

The new report says we are living longer and longer with our disease and we now number 150,000. The same number we were estimated to be on 2005. If we are truly living longer and longer, our numbers should be increasing, not stagnating … so how can we still be 150,000?

In my blog from October 15, 2013 I wrote: “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.”

Also in my October 15, 2013 blog I wrote: Silent Voices also includes the estimate that “every year between 73,000 and 86,000 American women discover they have metastatic breast cancer.” I pointed out that if we were 150,000 in 2005 and had that type of net gain … we could now number as much as 700,000. The new paper agrees that we are increasing, and by significant percentages, but it takes our current number back to the 2005 count of 150,000. Based upon what?

In my blog from July 8, 2016 I revisited the numbers issue.

The statement that “new” information shows that the number of young women being diagnosed with MBC is a bit misleading. A report to that effect came out early 2013.

The only new pieces of information I saw in this new report were:

  • the indication that 25 – 30% of first breast cancer diagnoses are metastatic. That is significantly higher than the 5-10% I normally see.
  • the allegation that younger (up to age 49) patients seem live longer with MBC than older patients. I was somewhat surprised by this. I know that the rate of metastasis for young women aged 25 to 39 has doubled (quadrupled in number) since 1979; and it seems to me that this group has a more aggressive breast cancer that takes lives sooner. The difference result from combining that age group with the 40-49 age group. The latter is said to have greater longevity and that might make a difference. That being said, due to the confusion caused by age-adjusted statistics, I don’t feel that I have a firm handle on numbers relating to death rates.

In my blog “Where are the Numbers?” I highlighted the numbers we had, the numbers we lacked, and the faulty logic and inexcusable omissions relating to all numbers associated with metastatic breast cancer.

Let me close this by saying that I DO have the impression that overall, people are surviving longer, but I caution that this is not due to statistics found, but to personal impression. I am well aware that this might potentially come from the fact that social media, which did not even exist when I was diagnosed, draws a huge number of MBC patients, and METAvivor has become so well known that the number of patients we interact with on a regular basis seems endless. My greatest hope is that this impression is true.

Let’s all keep tracking the numbers and pressing for more accuracy. One day we will succeed in having a truly accurate account. I hope to live to see that day.

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