Sorry Tyler Durdan, but I am special. To prove it to you, today I'm going to write about rarity: uniqueness, singularity, anomaly.
All of my doctors have told me specifically not to Google synovial sarcoma... but I'm a teacher, and I'm interested in everything, and I don't follow directions well.
And I get why everyone says not to look - statistics are misleading. They are just numbers, just hash marks on a chalkboard, just pure information. Those numbers haven't gone through the processing machine in order to make sense to a person with thoughts, beliefs, and emotions. No matter how hard we try, just by looking at the numbers, we are applying our own bias to them; like any good journalist knows, we can never be truly objective when we access and interact with undiluted information.
But we Google anyway. And sometimes the results are mind-blowing, depressing, or just downright terrifying. Let's review some of synovial sarcoma's stats:
American Cancer Society: There are 1.6 million people in the US diagnosed with cancer every year, and over 14 million worldwide. In 2015 about 11,930 new soft tissue sarcomas will be diagnosed in the US. (source 1, source 2, source 3)
Wikipedia: "Synovial Sarcoma is... [a] soft tissue sarcoma. It is one of the rarest forms of soft tissue cancer in the world." (source 4)
The Liddy Shriver Sarcoma Initiative: "Synovial sarcoma [accounts] for about 8% of all soft tissue sarcomas." (source 5)
So, according to the above statistics, soft tissue sarcomas are approximately 0.75% of all cancer diagnosis in the US last year. Of that 0.75%, synovial sarcomas are 8%, which means synovial sarcomas made up 0.06% of all cancers diagnosed in the US last year; that's about 1000 people. Since the data for synovial sarcomas has only been around for about 20 years or so, we can estimate that there have been only about 20,000 people in the US who have had synovial sarcoma that researchers have known about. After 20 years, some of those people are no longer alive, so let's be generous and say half are still around - about 10,000 people - which is only 0.003% of the current US population.
You can see why I get excited when I meet other synovial sarcoma survivors (I've met two).
You can also see why statistics on this particular strand of cancer (or any rare disease) can be so misleading. 20,000 people is not a very large sample size when it comes to cancer research, and especially since it's been spread over the course of twenty years. To compare, there were almost 300,000 new cases of breast cancer last year (and before you ask why I'm only quoting stats from the US, it turns out that almost 30% of global cancer research in the last 12 years has come from this country, followed by China at 7%, so I'd say we know what we're doing here [source 6]). The approach to treating cancer has changed quite a bit in the past two decades, and it continues to change as research moves forward; the more opportunities doctors and researchers have to work with the disease, the more quickly successful treatments are to emerge.
All of this explains when I first asked Dr. B (my original oncologist) what my outcome might be, he responded that it really depended on me.
Tom - being the logical, forward-thinking, and truly amazing person that he is - took to this concept right from the start. Whenever I needed to hear it (and probably when he needed to say it out loud), he would remind me that each synovial sarcoma case is very individual, and however "most people" had responded to something, may not be my experience, because "most people" in this case, wasn't really that many people.
As it turns out, Tom was right. If you remember my posts from just about a year ago, we found out that the chemo pill Pazopanib (also known as Votrient) was successful in not only stopping the growth of the tumors in my lungs, but also in shrinking them. As I look back on those posts, I realize I never really explained how much of a big deal this is. First of all, since I'm really into citing my sources today, here is a summary of the study they did for this particular medication. The drug was only approved by the FDA in April of 2012, and there were only 369 people who were a part of the original study, so, once again, the statistics are based on a very small amount of research. Most importantly, according to Dr. Morgan (my current oncologist, not the Dr. Morgan I live with), in his experience, only about 50% of people prescribed Pazopanib have a positive response, usually experiencing a halt in tumor growth. But, of that 50%, 5% of people's tumors actually shrunk. That's only 2.5% of the original number of people who were given the drug. That's me. I am the 2.5%.
Last week I had my routine three-month CT and MRI scans, to see if there's any visual evidence of the disease returning. There wasn't; all my scans were clear yet again. When Tom and I talked to Dr. Morgan afterwards, we asked him what we should expect moving forward. Dr. Morgan shrugged - shrugged! - his shoulders, and said "you're kind of a unique case."
Let me be clear: Dr. Morgan is the oncologist that my nurse practitioner described as "brilliant", he's a senior physician at a world-renowned cancer treatment center, he's a Harvard Medical School graduate and now instructor, his specialty is in rare sarcomas, and he shrugged.
He followed that shrug with this: "Maybe one of my colleagues at another hospital might have a patient like you..." and then shook his head and shrugged again.
I was struck dumb. I stared at him, eyebrows askant. I think Tom had a response, but I didn't hear it.
Once my brain caught up and I wiped the drool off my chin, I realized Dr. Morgan had moved on to answer our original question. He said Pazopanib is an angiogenesis inhibitor - or, as Tom put it in layman's terms for me: "it attacks and cuts off the cancer's food supply... you." Because the drug is not directly acting upon the cancer itself, if there are still cancer cells in my body, it is very possible that the cancer will not become resistant to the drug like what happens with so many other chemotherapies. And, Dr. Morgan said, since I'm managing my side effects so well, and there's literally no one else out there like me that he is aware of, "I don't see any reason to change what we're doing."
So, that's that. Keep on keepin' on. Continue as is (with blood draws and scans every so often to check on my insides), and hope for no change... for the long term. Long term. Two years ago, this was not really a phrase I was expecting to be able to use, but there it is. To be fair, who knows what long term really means - apparently, not even my world-class oncologist knows - but at least we're not using words like soon, close, or imminent.
And thus, to misquote Fight Club, I feel a little - a lot - like a unique snowflake. I am a singular individual so rare I puzzle the professionals. Ok, that's a little pretentious, but still. Two years ago I never would have guessed that this would be my future, or that I could even look my future in the eye again. I caught a huge break, and I truly consider myself lucky. My experience with cancer has honestly been one in a million. Sheesh, maybe I should go play the lottery.
N.B. I wanted to include this somewhere, but it didn't really fit: The Faces of Sarcoma.
So, according to the above statistics, soft tissue sarcomas are approximately 0.75% of all cancer diagnosis in the US last year. Of that 0.75%, synovial sarcomas are 8%, which means synovial sarcomas made up 0.06% of all cancers diagnosed in the US last year; that's about 1000 people. Since the data for synovial sarcomas has only been around for about 20 years or so, we can estimate that there have been only about 20,000 people in the US who have had synovial sarcoma that researchers have known about. After 20 years, some of those people are no longer alive, so let's be generous and say half are still around - about 10,000 people - which is only 0.003% of the current US population.
You can see why I get excited when I meet other synovial sarcoma survivors (I've met two).
You can also see why statistics on this particular strand of cancer (or any rare disease) can be so misleading. 20,000 people is not a very large sample size when it comes to cancer research, and especially since it's been spread over the course of twenty years. To compare, there were almost 300,000 new cases of breast cancer last year (and before you ask why I'm only quoting stats from the US, it turns out that almost 30% of global cancer research in the last 12 years has come from this country, followed by China at 7%, so I'd say we know what we're doing here [source 6]). The approach to treating cancer has changed quite a bit in the past two decades, and it continues to change as research moves forward; the more opportunities doctors and researchers have to work with the disease, the more quickly successful treatments are to emerge.
All of this explains when I first asked Dr. B (my original oncologist) what my outcome might be, he responded that it really depended on me.
Tom - being the logical, forward-thinking, and truly amazing person that he is - took to this concept right from the start. Whenever I needed to hear it (and probably when he needed to say it out loud), he would remind me that each synovial sarcoma case is very individual, and however "most people" had responded to something, may not be my experience, because "most people" in this case, wasn't really that many people.
As it turns out, Tom was right. If you remember my posts from just about a year ago, we found out that the chemo pill Pazopanib (also known as Votrient) was successful in not only stopping the growth of the tumors in my lungs, but also in shrinking them. As I look back on those posts, I realize I never really explained how much of a big deal this is. First of all, since I'm really into citing my sources today, here is a summary of the study they did for this particular medication. The drug was only approved by the FDA in April of 2012, and there were only 369 people who were a part of the original study, so, once again, the statistics are based on a very small amount of research. Most importantly, according to Dr. Morgan (my current oncologist, not the Dr. Morgan I live with), in his experience, only about 50% of people prescribed Pazopanib have a positive response, usually experiencing a halt in tumor growth. But, of that 50%, 5% of people's tumors actually shrunk. That's only 2.5% of the original number of people who were given the drug. That's me. I am the 2.5%.
Last week I had my routine three-month CT and MRI scans, to see if there's any visual evidence of the disease returning. There wasn't; all my scans were clear yet again. When Tom and I talked to Dr. Morgan afterwards, we asked him what we should expect moving forward. Dr. Morgan shrugged - shrugged! - his shoulders, and said "you're kind of a unique case."
Let me be clear: Dr. Morgan is the oncologist that my nurse practitioner described as "brilliant", he's a senior physician at a world-renowned cancer treatment center, he's a Harvard Medical School graduate and now instructor, his specialty is in rare sarcomas, and he shrugged.
He followed that shrug with this: "Maybe one of my colleagues at another hospital might have a patient like you..." and then shook his head and shrugged again.
I was struck dumb. I stared at him, eyebrows askant. I think Tom had a response, but I didn't hear it.
Once my brain caught up and I wiped the drool off my chin, I realized Dr. Morgan had moved on to answer our original question. He said Pazopanib is an angiogenesis inhibitor - or, as Tom put it in layman's terms for me: "it attacks and cuts off the cancer's food supply... you." Because the drug is not directly acting upon the cancer itself, if there are still cancer cells in my body, it is very possible that the cancer will not become resistant to the drug like what happens with so many other chemotherapies. And, Dr. Morgan said, since I'm managing my side effects so well, and there's literally no one else out there like me that he is aware of, "I don't see any reason to change what we're doing."
So, that's that. Keep on keepin' on. Continue as is (with blood draws and scans every so often to check on my insides), and hope for no change... for the long term. Long term. Two years ago, this was not really a phrase I was expecting to be able to use, but there it is. To be fair, who knows what long term really means - apparently, not even my world-class oncologist knows - but at least we're not using words like soon, close, or imminent.
And thus, to misquote Fight Club, I feel a little - a lot - like a unique snowflake. I am a singular individual so rare I puzzle the professionals. Ok, that's a little pretentious, but still. Two years ago I never would have guessed that this would be my future, or that I could even look my future in the eye again. I caught a huge break, and I truly consider myself lucky. My experience with cancer has honestly been one in a million. Sheesh, maybe I should go play the lottery.
N.B. I wanted to include this somewhere, but it didn't really fit: The Faces of Sarcoma.
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