When I was first diagnosed, I'd never heard of multiple myeloma and was told it was "rare". I've since read it is the second most common blood cancer. I admit I'm a little confused by this, but that's not the reason for this post. An explanation, however, might certainly be relevant.
As I told people about my diagnosis early on, it was common for someone to say "oh, my friend's father had that", "a man I knew at work had that". I was diagnosed in March/April 2015, about when Tom Brokaw's book and public disclosures were being made, and I learned of the other famous people who were victims of this disease. I treated all of this as coincidence; something like buying a blue Toyota and suddenly noticing all the blue Toyotas on the road. But now I'm wondering.
Early in my journey I decided I wouldn't broadly share my diagnosis until it was going to impact my work and interactions with people. As I'm approaching a stem cell transplant that will greatly impact my work and interpersonal interactions, I've started telling more people. In the last two days alone I learned that two people who are fairly close to me also had multiple myeloma. I knew they dealt with "cancer" in the last few years, but I didn't know it was myeloma.(perhaps my definition of "close" or the quality of my interpersonal or listening skills are a subject for another day) I don't have any common history with these people, other then knowing them from work or personally for several years. I don't think I have a big circle of friends and acquaintances. But counting myself, that is three people within my circle diagnosed with multiple myeloma within just a few years.
So that's my question. Is this a coincidence? Am I just hyper-sensitive to the diagnosis? What is "rare"?
What are your thoughts and experiences? I'm asking purely to open conversation. I don't consider it relevant to how I feel about my diagnosis or the treatment or the science. I'm wondering if this is just yet another common experience with other multiple myeloma patients.
Forums
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How "rare" is multiple myeloma really?
Hello Mark W:
I was staged IgG kappa Stage IIA on February 16, 2015.
Back to your question, I read last week that multiple myeloma is one percent of total cancer.
I was staged IgG kappa Stage IIA on February 16, 2015.
Back to your question, I read last week that multiple myeloma is one percent of total cancer.
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MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: How "rare" is multiple myeloma really?
I've seen this statistic too. Without a full context a percentage is not very useful. Numbers can be funny.
Last edited by Mark Pouley on Sat Feb 20, 2016 8:21 am, edited 1 time in total.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How "rare" is multiple myeloma really?
Multiple myeloma is not, in my opinion, rare. The American Cancer Society estimates there will be over 30,000 new cases of myeloma in 2016. It is significantly more common than ovarian cancer and all cancers of the brain.
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Ted Kan - Who do you know with myeloma?: Self
- When were you/they diagnosed?: December 2014
- Age at diagnosis: 75
Re: How "rare" is multiple myeloma really?
Ted Kan: I have read that a "common" cancer is one in which there is an incidence of more than 40,000 cases per year. Under this criterion, both ovarian cancer and multiple myeloma would appear to be " rare." With better detection, as has been occurring in recent years, I bet the incidence of myeloma will be increasing.
Re: How "rare" is multiple myeloma really?
I hadn't intended a statistics review, but your comment intrigued me and the numbers may surprise people like they did me. Here's the link.
https://cancerstatisticscenter.cancer.org/#/
https://cancerstatisticscenter.cancer.org/#/
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How "rare" is multiple myeloma really?
You say blue Toyota, I say gray Honda
It sure seems more common than odds would suggest. My GI doctor as well has two other people I've eaten with were diagnosed with multiple myeloma. I already had severe back pain due to a compressed vertebrae while eating brunch with a lady before we both were diagnosed in spring 2014. Oh sure, we know the famous judges and railroad tycoons, but the common folk. I encouraged a new patient to our support group and she met another old friend of hers and another first time support member whose husband was recently diagnosed.
Here is another coincidence. When I received my first transplant, I heard a man in the next room getting his first. Come to find out, we have the same first name, were from the same state, and we were the same age - getting our first stem cell transplant at the exact same time.
It sure seems more common than odds would suggest. My GI doctor as well has two other people I've eaten with were diagnosed with multiple myeloma. I already had severe back pain due to a compressed vertebrae while eating brunch with a lady before we both were diagnosed in spring 2014. Oh sure, we know the famous judges and railroad tycoons, but the common folk. I encouraged a new patient to our support group and she met another old friend of hers and another first time support member whose husband was recently diagnosed.
Here is another coincidence. When I received my first transplant, I heard a man in the next room getting his first. Come to find out, we have the same first name, were from the same state, and we were the same age - getting our first stem cell transplant at the exact same time.
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: How "rare" is multiple myeloma really?
blueblood,
Ok. That is a lot of coincidence for sure. And that was EXACTLY my point ! "It seems more common than odds would suggest."
Ok. That is a lot of coincidence for sure. And that was EXACTLY my point ! "It seems more common than odds would suggest."
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: How "rare" is multiple myeloma really?
Very interesting question! I've had many of the same experiences that Mark described at the top of this thread. And I've wondered the same thing. Just how "rare" is multiple myeloma?
So you got me curious to look up some more stats. SEER says there were 89,658 people living with multiple myeloma in the US in 2012. Also, they estimate 26,850 new cases in 2015, which is a bit fewer than what MarkW found estimated from the ACS cancer stats link he provided. SEER says myeloma is the 14th most common form of cancer, while the ACS cancer stats site from MarkW says 15th.
If the current US population is 318,900,000 (which I got from Google), then you get something like roughly 0.028% of the US population currently having myeloma (89,658/318,900,000), or 3 out of every 10,000 people.
Now if we assume that the average person in the US knows 600 people, then you've got a 17% chance that at least one of the 600 people you know has multiple myeloma (0.00028*600 or (600/318,900,000)*89658)). If you go out to 1 degree of separation, then that widens the pool to 600*600 or 360,000 people that you and your acquaintances know (ignoring the fact that some of your friends know one another, just to make the math simpler). So then with that huge of a pool, it works out that about 101 of those people would have myeloma! ((600*600)/318,900,00*89658)
Given that, I think your Blue Toyota hypothesis is correct, Mark. There are enough myeloma cases out there that it's very likely that you personally know someone with it or someone you know knows someone with it. But since we don't go around wearing signs saying we have myeloma, how frequent it is only pops up in conversations once we start talking about it.
Huge caveat: I am no epidemiologist, so it's quite possible I've made a bogus assumption in how to do the math to get the estimates I got. So if you find a problem, please let me know.
BTW, my small world story on this is that in the fall my long-time allergist and good friend was diagnosed with multiple myeloma. He is the person who first noticed that something was off in one of my routine blood lab results in 2009, and that led to my diagnosis of MGUS back then. Not fair that he would get it too.
Mike
So you got me curious to look up some more stats. SEER says there were 89,658 people living with multiple myeloma in the US in 2012. Also, they estimate 26,850 new cases in 2015, which is a bit fewer than what MarkW found estimated from the ACS cancer stats link he provided. SEER says myeloma is the 14th most common form of cancer, while the ACS cancer stats site from MarkW says 15th.
If the current US population is 318,900,000 (which I got from Google), then you get something like roughly 0.028% of the US population currently having myeloma (89,658/318,900,000), or 3 out of every 10,000 people.
Now if we assume that the average person in the US knows 600 people, then you've got a 17% chance that at least one of the 600 people you know has multiple myeloma (0.00028*600 or (600/318,900,000)*89658)). If you go out to 1 degree of separation, then that widens the pool to 600*600 or 360,000 people that you and your acquaintances know (ignoring the fact that some of your friends know one another, just to make the math simpler). So then with that huge of a pool, it works out that about 101 of those people would have myeloma! ((600*600)/318,900,00*89658)
Given that, I think your Blue Toyota hypothesis is correct, Mark. There are enough myeloma cases out there that it's very likely that you personally know someone with it or someone you know knows someone with it. But since we don't go around wearing signs saying we have myeloma, how frequent it is only pops up in conversations once we start talking about it.
Huge caveat: I am no epidemiologist, so it's quite possible I've made a bogus assumption in how to do the math to get the estimates I got. So if you find a problem, please let me know.
BTW, my small world story on this is that in the fall my long-time allergist and good friend was diagnosed with multiple myeloma. He is the person who first noticed that something was off in one of my routine blood lab results in 2009, and that led to my diagnosis of MGUS back then. Not fair that he would get it too.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How "rare" is multiple myeloma really?
I question the 90,000 total number. If close to 30,000 are diagnosed each year but only 90,000 are living with it, that suggests that people live no more than 3 years with the disease on average. That is not the case. I am on year 7, and I don't think of myself as an outlier. If the average survival is just 5-7 years, then there should be between 150,000 - 210,000 living with it.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
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