Today I am celebrating a very special anniversary. Five years ago, on April 8th, 2005, I was diagnosed with lung cancer. Statistically speaking, the fact that I’m still at this party is a personal victory. As many of you know, the overall five year survival statistic for lung cancer is 15%. On a sober note, that means that out of one hundred people diagnosed with lung cancer at the same time I was, only fifteen are still alive.
The old numbers game, and when you’re talking lung cancer, those numbers are not favorable.
In my case, they have gotten less favorable as time has gone on. I am looking at a letter dated August 29th, 2005. It is my oncologist’s (at that time, Dr. Tom Lynch) response to my statistical prognosis and the potential benefit of adjuvant chemotherapy. This is what he had to say:
“Some statistics will say that the survival is 60% and others 70% (both are without chemo) …I believe that Linnea’s characteristics are more consistent with the better prognostic group…If one looks at older data the benefit [from chemo] is 5%. However in the most recent CALGB and NCI Canada data that benefit was either 11% or 13%. Thus if you add 13% (CALGB) to 70% you get 83%…”
So the most positive spin possible put my initial five year survival statistics at 83%. These somewhat arbitrary and very slippery numbers were arrived at by taking into account my stage, treatment options and other variables such as my non-smoking status, age, sex and relative health.
Roman numeral V and V for victory
The final four factors were all very much in my favor, as was the fact that surgery was possible. Tom had concluded the letter by saying…”Most important is to know that from your perspective the percentages don’t really matter. Cure is an all or nothing phenomena and I remain confident that we have done everything we can to get the best possible outcome for Linnea and that she has a very, very strong chance of cure.” Well, that cure would prove elusive, and as I learned more, I realized that many of the characteristics of my particular cancer were rather poor prognosticators.
Let me break it down for you. I was diagnosed with NSCLC, or non small cell lung cancer. Pathologically I had an adenocarcinoma, with a BAC, or bronchioaveolar, subtype. BAC can be quite indolent, or slow growing, and survival statistics are often higher (as high as 100% for tumors <3cm). My stage was IB, with T2 (tumor size >3cm) and N0 (no lymph node involvement) classification. The fact that I was a stage I was highly encouraging, and meant that a surgical cure was possible. However, the size of my tumor, which was 5cm, meant that I was a stage IB, rather than a IA, and statistically speaking, that meant perhaps a 20% decrease in survival. In addition, my tumor was located in a lower lobe on the left side (a poor prognosticator) and was mucinous (again, a poor prognosticator).
From a treatment perspective, a lower left lobectomy followed by adjuvant chemotherapy with cisplatin and Taxotere would give me a shot at that 83% survival statistic to which my oncologist referred.
However, despite surgery, and adjuvant chemo, my cancer spread (likely due in part to both my mucinous BAC pathology and my yet undiscovered positive ALK mutation status–now both recognized as indicators that traditional platinum based chemos may be ineffective).
So, long (and getting longer) story short, I now have recurrent/advanced/metatastic/terminal lung cancer. That original 83% has shrunk to a dismal 4% five year survival statistic. But, against the odds and thanks to an amazing combination of science/luck/persistence, I’m still here.
NED, or No Evidence of Disease, is a coveted designation in cancer. I was never able to say I was NED. I would like to propose a new acronym, NDY, or Not Dead Yet. Take that, cancer!
life and breath: outliving lung cancer 