Everything Changes - The Guide to Young Adult Cancer

One of the most heart wrenching days of my life came after my first surgery when I learned I had a rare disease variant of my cancer.  It tanked my survival rate an extra 20%.   I felt like someone was yanking my heart through my nostrils.  Years later, a subsequent pathology report showed no evidence of the rare disease variant.  Poof, I was jacked back up to the normal papillary thyroid cancer statistics – which are damn high.  I don’t know what made the variant disappear but I’m extremely grateful.

I love this quote from Rick Gribenas in my book Everything Changes: “Ambiguity is more real than a prescribed prognosis, which is complete crap.  If there’s an 80% chance of this, or a 20% chance of that, it’s still a chance.  Who knows which percentage I’ll fall into?”

I agree that you have no way of knowing which percentage you’ll fall into, but I still want to know my prognosis.  In my mind, not knowing my odds harkens back to the days when doctors refused to tell patients of their prognosis because they didn’t think we could handle the truth.  (I’m sure there are still a few docs who think this way.)

I want to prepare myself for the odds, even though I don’t know which side of them I will be on.  The danger in this for me is that I’m a hypochondriac freak and if my odds were crummy, it would be hard for those numbers to not rule my life.  On the other hand, when I recently learned that my odds of my cancer metastasizing to my lungs, brain, and bones were lower than I expected, it brought me great peace of mind and I was glad to know the numbers.

It irks me when people say “a number is a number” or “I’m not a statistic.”  I feel like those phrases trash science and I’m a big fan of science.  Statistics represent a lot of information that can help navigate our choices in how we treat our diseases.   I think it’s possible to simultaneously look at our health in terms of statistics and live as fully emotional beings.

My prognosis is good so I’m sitting in a pretty cozy space to make these judgment calls about wanting to know my stats.  Maybe this whole post would read a lot differently if my numbers sucked.

Do you want to know your survival rates?  How do you mentally contain that information?

Ric is is a brilliant and philosphical patient.  Read more about him in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

A few years ago, I had my doc ask for a second opinion from a second pathologist, who interpreted lab results differently than what the original lab report read.  This is a big deal when you are talking about cancer.  The words “second opinion” are used during the first weeks or months of cancer when we are setting up shop with our docs. But you can get a second opinion anytime you want (or anytime your insurance will cover it!)

Check out this short video. I was so drawn in, I felt like I was watching a full length documentary. I wanted to stay glued to the screen for an hour with a bucket of popcorn.

The gist is that Myriad, company in Salt Lake City, owns a patent on a few of your genes (BRCA1 and BRCA2) that show your likelihood of developing hereditary breast and ovarian cancer. What’s the big deal?  They are the only company that has the rights to do research, screening, or testing of these genes, as well as developing pharmaceuticals related to the genes.  You can’t get a second opinion from another lab to make sure the test is accurate or interpreted correctly. It also means they are the only game around so if you cannot afford 3,000 buck for their test you are SOL.

This is just wrong. Hats off to Breast Cancer Action for engaging the ACLU in a lawsuit to challenge the patent that the Federal Government gave to Myriad. I fully support their efforts and hope that they kick some ass.

Have you ever sought a second opinion beyond your initial diagnosis and choice in doctors? Have you done or would you do genetic testing? Would you want these tests performed by multiple labs to verify accuracy? What do you think of the ACLU’s suit?