Day 32: Bargaining and quality of life.

I like data and I like research.  Now… with cancer you will find loads of conflicting research and data.  Which makes sense, every person and their cancer is unique.  But it struck me that in a way this is really looking at odds and estimated percentages.  Treatments are based average success rates and your life becomes measured in blocks of years.  In fact, survival rates for cancer are typically calculated in terms of how many people live at least five years after their diagnosis. Yes five years, for ILC is currently reported as 85% with a 30 year survival rate of 50%.

There is a lot of focus on living, extending years and extending life, but not a lot of talk about quality of life.  A topic I plan to force into conversation this coming week as I follow up with the oncologist (Monday) and surgeon… sometime during the week.

I’m not gonna lie… reading about chemotherapy makes you question the odds makers and do some research. One study I found said, “In the end, our study indicates that primary chemotherapy, with its toxic effects, may not be the best standard of care for women with invasive lobular carcinoma,” Cristofanilli says. “Additional investigation, including genomic and proteomic studies, are warranted to help clarify the unique biological features of this disease.”  http://www.news-medical.net/news/2005/01/03/7087.aspx

For my fellow data nerds… you can lost for awhile in here: http://jco.ascopubs.org/content/23/1/41.full or here http://erc.endocrinology-journals.org/content/14/3/549.full#sec-16

So… this brings us to bargaining and the Kubler-Ross model which identifies the five stages of grief as denial, anger, bargaining, depression and acceptance.  Interestingly enough, I think that with cancer you can hit all of these in an hour… kind of like a carnival ride….

As I research and think through chemotherapy, it strikes me that I need to ask the question not just about quality of life but percentages and success rates when it comes to no treatment, surgery only, chemotherapy only, surgery and chemotherapy, naturopathy, etc.  In other words, I need to know all the options and in all honesty I am not yet convinced with the numbers when it comes to chemo.  During the web surfing and research I keep seeing a little survey of 128 US cancer doctors quoted found that if they contracted cancer, more than 80 percent would not have chemotherapy as the “risks and side effects far outweighed the likely benefits”.

I know this may be perceived as bargaining, I don’t know, I see it as my job to do my due diligence and ask about all options.

Something I know about myself… it is not about how long I can be here, it’s about what I can achieve while I am here.  Quality of life matters – and it will be the topic for next week as I talk with doctors.

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