Where Are the Numbers?

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.

In Search of Facts for Metastatic Breast Cancer
by CJ (Dian) Corneliussen-James

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.

1. How many people are diagnosed annually with MBC?

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.

2. Where are the men?

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.

3. How many are currently living with MBC?

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.

4. How many patients survive 5 years?

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.

5. How many Americans die annually of MBC?

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.


Metastatic Breast Cancer Awareness — Making Every Dollar Count

Today is Metastatic Breast Cancer Awareness Day (MBCAD) … one day for the roughly 40,000 of us dying each year of the disease. One day for the estimated 73,000 – 86,000 diagnosed annually with our disease. One day for the unknown number of Americans living at any given time with our disease.

We deserve more. Much more. We are 30% of the breast cancer population and we deserve 30% of breast cancer research funding; we deserve 30% of breast cancer support activities; we deserve 30% of Breast Cancer Awareness Month (BCAM). Thus METAvivor is claiming not just Oct 13th for recognition of metastatic breast cancer; we are claiming 30% of the month. We are claiming Oct 13th – Oct 22nd … 10 days instead of one.

Stay tuned to this page for new information coming out every day for the next ten days. Let our voices be heard!

Making Every Dollar Count:
When $320,000 can do as much as $30,000,000
by CJ Corneliussen-James

NOTE: I have used footnotes to add sources and explain in more detail a number of statements that were distracting in the article but I felt should be included. I encourage you to read them.

This year METAvivor will award $320,000 in metastatic breast cancer research grants. How much in donations and fundraiser proceeds did it take to do this? Just $320,000. Many organizations would need over $30,000,000 to achieve the same thing. We don’t. Here’s why.

When I look at other cancer organization online I always look for their financial information. There I find little charts dividing their budgets into a host of categories including research. In most cases, this is how your donated dollar is used. It is divided up to help fund each category on the chart. It’s quite justifiable. But research is often greatly underfunded and the percentage of the research going to stage IV cancer is miniscule.

Of the few pieces of information I’ve found over the years, there was a 2004 report stating the National Cancer Institute was spending less than one-half of 1% of its $5 billion annual cancer fund on stage IV canceri. Then there was a 2007 roundup of that estimate to “less than 1%” of research funds going to metastasis research(ii). Finally a 2010 study reported a 5% stage IV research average(iii) for the western world, ranging from 11.6% (Switzerland) to 2.3% (US).(iv)

I began doing some calculations and they were shocking. I shared them a few weeks ago with friend and he said: “You must put that out there for people to understand. It has certainly changed my mind about where to donate.” So here it is.

Most organizations put far less than 50% of their revenue into research. I’ve seen well known and highly respected cancer organizations put as little as 10% of their revenue into research. For the sake of this paper, I’ll go with 30%. Of that 30% that goes into research, the average amount going into stage IV research appears to be about 2.3%, but I’ll use a more generous 3.5%. So here’s what we have.

Company X has $30,000,000 in revenue. It puts 30% ($9,000,000) into research. Out of that it puts 3.5% ($315,000) into stage IV research. Yet all METAvivor needs is $320,000 in donations and fundraiser proceeds to do in excess of that! And don’t forget that if the organization is not a breast cancer organization, only about 60% of the $315,000 ($189,000) goes into MBC research.

METAvivor puts 100% of every donation and 100% of fundraiser proceeds into its metastatic breast cancer research grants.(v) As to our operations and activities, we do only what we can get funded through scholarships, sponsorships and grants received. If we don’t receive enough, we don’t make it to a conference or we don’t print as many fliers, or we continue to store inventory in our basements and our cars (hoping for a better alternative in 2014). But our donation/fundraiser fund is untouchable except for research grants.

METAvivor has another advantage. We are all volunteers, working out of our homes(vi) and off personal equipment. Not only our lives, but the lives of tens of thousands of people we care deeply about are at stake. We have a passion and dedication born of our illness that keeps us pressing forward regardless of the challenges we face. We refuse to get caught up in nonsense or superficiality as they can only be a distraction. And we are determined to achieve our ultimate goal of drastically increasing MBC research and ultimately saving lives.

With your help, we will succeed.

i Why We’re Losing the War on Cancer [and How to Win It]. Clifton Leaf, Fortune Magazine, 2004.

ii CNN LIVE EVENT/SPECIAL, Sanjay Gupta Special: Saving Your Life, Aired January 13, 2007 – 20:00.

iii Cancer Metastasis as a Therapeutic Target. Patricia Steeg, PhD and Jonathan Sleeman, European Journal of Cancer. Volume 46 Issue 7, pg 1177-1180, May.

iv Metastatic breast cancer research is a term that is now also used for research to “prevent” MBC and for research to discover the steps in a progression to MBC. There is no longer any unique term devoted to research focused exclusively on finding solutions for the already metastasized breast cancer patient. METAvivor solely funds research devoted to the latter. But given the overlap in terminology, what one person may call metastasis research is not necessarily anything that will help the stage IV community. And that skews the statistics.

v Proceeds from third-party fundraisers are considered donations by METAvivor and thus 100% of those proceeds have always gone toward our research grants. Proceeds from METAvivor’s own “local” fundraisers were initially divided with 90% going into our research grants and 10% being used for administrative purposes to help keep us afloat. Fortunately, that is no longer necessary and 100% of all local fundraiser proceeds are now also going into our research grants. NOTE: About a year ago we entered a local, short duration fundraiser contest. Any proceeds earned had to be used locally, which excluded research. We entered using a completely different fundraising portal and widely advertised that any proceeds through that portal would go toward a gazebo erected in honor of all persons with stage IV cancer. About $200 in local donations were collected and each donor specified the donation was for the gazebo. We regret that this action caused concern on the part of a few supporters. We learned a valuable lesson. Rest assured that 100% of your donations will indeed go into our MBC research grants.

vi The Chesapeake Life Center has very generously rented us an office for $1 per year that one person can use two days per week.


Medical Emergencies and the Single Girl

or How I Use Medical Identification Jewelry to Keep in Touch

When my mother suffered a hemorraghic stroke in August 2008, we could not find her living will for two days. Now my mom had watched her own father die a lingering death, his body tied to a hospital bed by tubes, IV’s and a catheter while he hung in a tenuous coma for over a month. Mom had sat by my grandfather’s hospital bed the entire time, watching her father fade as the medical staff moved constantly in and out of the room to tweak the dials delivering the medication that kept him in delicate balance between life and death.

As soon as my grandfather died, my mother made sure she had a living will, or advance directive, in place to make sure the same thing never happened to her. The thought of being trapped in a coma for the rest of her living days scared her so much, in fact, that she purchased a copy of the book Final Exit, and kept it close at hand so she could feel she had control over how she would die.

So not being able to find my mother’s living will, while she lay in a hospital bed, her brain destroyed by the hemorrhage, her body tied to tubes in the same way her father’s body had been, scared the heck out of me. Finally, we found the document, and my brother, my mother’s health Power of Attorney, flew in from Florida, and we sadly helped my mother die. According to her wishes.

I would not recommend the experience of helping a loved one die. It is a horribly sad experience. But I knew this was what my mother wanted in that situation. And I know it is what I want for myself if faced with the same thing. So I also have a living will.

The question became though, what if like my mom, I collapsed suddenly? I live alone, far away from family. What if I were to fall in the middle of the street, only strangers nearby to help? How would they know who to call? And what if my loved ones could not find my living will?

At the time I was friends with a woman who wore a medical alert bracelet. I began to look at wearing one myself. I discovered that medical alert identification companies often offer a service that links your medical ID to a living will/advance directive filed with their service. They’ll also keep a list of your emergency contacts, your doctors, and a list of current medications.

Morbid it may be, but I was thrilled. I paid the $35 a year membership to the MedicAlert Foundation, and got my own little medical identification bracelet. The humorous part of the membership was when a representative called me asking what medical condition I wanted engraved on the bracelet. “Well,” I said, “I have high cholesterol.” We both laughed. The sad thing was that only three years later, I would truly qualify for a medical identification bracelet with Stage IV breast cancer, a medical port, and blood thinners. I feel honored.

But the most important thing is that when I wear my medical identification bracelet, it gives me a feeling of safety and assurance. I know that if I were to suddenly lose consciousness, hopefully an unlikely event, medical personnel will be able to quickly find my emergency contacts, talk to my doctor, find my living will, and receive an up-to-date list of all my medications and conditions. I know that more than 95% of medical personnel check for medical ID jewelry. And with current medical information, hospital staff will be able to make better decisions in my care. What more can a single girl need?

Here’s the complication. I am a stylish gal. I wouldn’t be caught comatose wearing the dreary stainless steel drab of a typical medical identification bracelet. You know that I found sources for fabulous yet practical medical ID jewelry. Of course I did. The wonderful things is that all a good piece of medical alert jewelry needs to work as planned is a the Caduceus symbol, the phone number for the organization with my records, and my medical alert ID number. Stylish and safe. A single girl’s dream.

Where can you find this stylish jewelry? Well, let me tell you about a few sources. There are many other sources out there, so keep in mind that this is only a start.

Another great source of medical identification jewelry is the site Etsy.com, which is sort of like eBay for artists. There are many beautifully crafted and affordable pieces available through this site. Just search for “medical alert” or “medical identification”.

So get shopping, gang. Buy that beautiful piece of jewelry. Send in that medical information, contacts, and advance directive for easy retrieval. And then relax, enjoy, and go live your life. We’ll be here when you need us.

Susan, The Uppity Cancer Patient

Note from Kathi: this image links to a page where you can get the design on a teeshirt; the proceeds benefit METAvivor. And you can link to Susan’s blog at The Uppity Cancer Patient.

For further information about living wills and your individual state’s requirements, you can visit this link at the U.S. Living Will Registry. Information about advance directives, including the Power of Attorney for Healthcare, can be found here at NOLO.com.


363 Points Down

At age 35, Lori was diagnosed with Stage II breast cancer. She was a young wife and mother of a then three-year-old son. About ten months ago, ten years after her initial diagnosis, she was diagnosed with metastatic breast cancer. This is a post from her thoughtfully-written blog, Regrounding, about where she’s at now. With her gracious permission, we republish it here.

Breast cancer tumor marker image from MIT Spectrum.

I has been nearly ten months since every breast cancer patient’s worst nightmare became my reality.

I can still remember looking behind me at the evocative 5-year mark, as tamoxifen came to an end and there was nothing but life ahead of me. I had dodged a bullet, and while there were still pesky follow-up visits, each day was a step closer to being “cured.” My heart ached for those who were not likewise blessed to have life after cancer, and even as I inched my way further and further from treatment, I vowed to never take my good fortune for granted. That is, of course, all it was. It could just have easily been me. In fact, it just as easily became me.

Sometimes women who have put treatment for early stage disease behind them demand that I believe that they understand; as if their own experience is otherwise “less than” – less authentic, or less powerful, or less worthy. Of what I do not know. Of course their own cancer journey is a powerful, life-altering, life-appreciating experience. I have no need or desire to compete. I stand ready to celebrate the death of every cancer cell, be it in their body or my own. But a diagnosis of mets is different.

Ironically there are days when I’m not sure I have street cred amongst the MBC crowd either. My cancer remains asymptomatic, and predominately detectable by tumor marker. My scans are stable, and if anything we seem to be reversing the course. Having watched my tumor marker rise precipitously for two years, from below a normal of 42 to a peak of 491, I have been comforted by its persistent drop since I resumed treatment in August. I have no pain, no neuropathy, no alopecia, no nausea. I am weathering my treatment as smoothly as anyone might.

Too smoothly, perhaps. While it appears on the outside that everything is just fine, it doesn’t always feel that way on the inside. And yet the pressure to “count my blessings” and “be positive” is enormous. Most days being positive comes easily. I am optimistic and confident that I will beat this back. But every now and again the gravity of having metastatic disease washes over me, and I have to dig deep to find those blessings. Some days I just need to be angry and sad and frightened. And I need it to be okay with the people around me.

If surviving an early-stage breast cancer diagnosis is a brush with death, then living with metastatic breast cancer is a dance with it. There will never again be a cancer-free day (which is not to say that there ever were, but sometimes I could act like it). Instead of an annual scan, I am forced to face my fears every four weeks and to wonder at night what it is like to die of breast cancer. Trying to live every day as if it’s your last, with appreciation for the gift that it is, and the taste of its brevity is, on one hand exhausting, and on the other the most exquisite gift.

As my tumor marker inches down, from 491 to 128, I am grateful for each of those 363 points it has dropped, even if none of us really knows that they mean. Markers measure response to treatment, and clearly treatment is working. What happens when I arrive at “normal” I do not yet know. I’ll keep you posted…

For more information about tumor markers, you may visit the following links:
National Cancer Institute – Tumor Markers
American Society of Clinical Oncology’s Guidelines for Tumor Markers for Breast Cancer
~ Kathi