Info: What Doctors Owe Us

I just had a brief exchange on a forum I frequent with a lady who complained that doctors didn’t put their personal information up on the web so patients could access it at their leisure. Her reasons centered on the idea that when people were given their diagnosis, they were in shock and only heard the smallest parts of the conversations that ensured after the bad news. The thing is, I used to agree wholeheartedly with that idea –until reality set in and I understood the greater picture.

When doctors give us the worst news we’ll likely ever get, part of what they’re saying is fact. The other part is conjecture. If there is one constant with Multiple Myeloma, it’s that every case is different. Some are significantly so while others are mildly different. But those large and small differences have the ability to create tremendous differences in the cases. So the only real information you can take to the bank, aware the check won’t bounce, is that you have Multiple Myeloma. From there out, the wheel of chance begins to spin. Once it does, the only things our doctors can really tell us is the information we see all over the Internet.

The nice lady was of the opinion that the info available on the web wasn’t case specific enough to be satisfying. What she fails to understand is that her doctor would be answering her questions and offering the same background information that is found on the web. In spite of a great willingness to speak with me, I found better answers on the web than I did with my doctors. One agency in particular was an absolute gold mine of data: The International Myeloma Foundation.  The IMF not only had a ton of information on the web, but took more than a few of my calls, patiently answering my questions and doing their best to alleviate my fears. They also have an online forum in which patients and caregivers can communicate interact with one another, and also with the numerous physicians who drop by to answer questions or tell of something new coming along. With no offense to my physicians, that organization and its various outlets were a lot more reassuring than my doctors. Maybe because all of my doctors told me I was most definitely going to die within six months, basing their expiration dates on the severity of my case. When diagnosed I was well beyond Stage III, the so-called Myeloma end stage. My skeleton was riddled with lesions and my pelvis was actually missing large chunks. X-rays of my rib cage showed bones that appeared to be made of cheesecloth, rather than the reassuring solidity of my unaffected bones. My primary oncologist remarked that he’d only seen bone damage as severe as mine post-mortem. (In dead people)

All of my physicians were wrong about my prognosis, of course. Here it is 2012 and I got this bad news in 2008. The information that I read on the Internet turned out to be a lot more accurate than the information I was given in consult with my doctors. On the web I learned that there were mortality statistics based on a five year median, along with statistics in regards to those who showed response to treatment. I began to understand that I was looking at a bell curve, and that just as in my classes in school, there was what the majority of the class picked up, and there were those who were slower on the uptake as well as those brainiacs who contemptibly reminded our teachers they forgot to hand out homework.

Gleefully, I am one of the brainiacs in this case, outperforming the average by a stunning margin. Then too, if you look on the Internet, reading the massive amounts of information available, you learn that there are a lot of different treatment theories. High dose chemotherapy, low dose chemotherapy. Intravenous and oral. Now we even have subcutaneous injection. We have learned that the cancer manifests itself in a multitude of ways, each in a few major classifications. There’s MGUS and smouldering, where there is the presence of indicator proteins and no monoclonal cells, and there are cells, but so far they haven’t been able to achieve a foothold. There is symptomatic and asymptomatic versions of Multiple Myeloma and secretory and non-secretory manifestations.

The bottom line here, is that different doctors are likely to have different things to say when it comes to case specifics. While all of my doctors agreed that I was doomed, each had a different therapy regimen they suggested. Some wanted to use Thalidomide, others Doxorubicin. There was the Bortezomib opinion and a Lenalidomide opinion. Over the course of my therapies, I found them all to be wrong. My case was different enough that in all treatment cases, the cure was more deadly and disabling than the disease, and watchful waiting and pain management would have been the better choice. In the end they all agree on this, as well as that the cancer was antagonized and prodded to faster progression by the treatments. In fairness, I have to defend the doctors; for what they knew, each was right in their own ways as the approached me as a new case. Part of treatment is trial and error. Fortunately, much of the time doctors get their programs right enough to have positive effect, and the more time goes by, the better they get at reading the tea leaves.

All of this leaves your physician with two options: they can try to explain everything as it may relate to your case atop dealing with our treatment, or they can tell you the findings specific to you and focus themselves on your medical care. When you see it this way, the obviously preferable choice is to focus on trying to stall the cancer’s progression and help you with the collateral effects of your cancer and treatment. Doctor’s have only so much time. While we would like to be their primary focus, it’s just not realistic to have them at our beck and call as personal encyclopedias.