Wednesday, June 29, 2011

So, I have been writing the proposal for my thesis this summer, and I just thought I would post a little section to give some background on what it's all about:

The American Cancer Society estimates approximately 1,596,670 new cancer cases will be diagnosed in 2011. Five percent of breast cancer patients, 20% of colon cancer patients, 56% of lung cancer patients, and 53% of pancreatic cancer patients will be diagnosed stage IV. Stage IV is defined as any cancer that has spread (metastasized) to remote organs or tissues. Considered incurable, it is usually inoperable but can be controlled for a time with treatment. For most patients diagnosed with stage IV cancers that period of time is rarely greater than five years. Many face a prognosis of just one or two years.

However, the number of people living with stage IV cancer is on the rise. Data collected by Surveillance, Epidemiology, and End Results (SEER) Program from 2004 to 2008 shows a significant improvement in 5-year survival rates for breast cancer (6% in 1999 vs. 23% in 2008), which receives the largest amount of cancer funding. During this time, research and treatment has moved away from traditional chemo and radiation therapies toward targeted treatments, which have helped women live longer with fewer side effects.4 Although the survival rates for colon, lung, and pancreatic cancers have not increased as dramatically, they are steadily improving and should continue to rise as more targeted treatments come on the market for all types of cancers.

These individuals living longer with metastatic cancer face different issues than the newly diagnosed and those patients at the end of life. Most of them will be in treatment for the rest of their lives. They live in fear of the day when their treatments will stop working or the side effects will become intolerable. They anxiously wait for their next scan as their very lives depend on the results. They are living longer with dying as their disease slowly slips into a chronic state. The constant ups and downs of their experience may leaving them feeling gratitude, guilt, alienation, optimism.

When my mother was diagnosed with stage IV lung cancer with metastasis to the brain, doctors gave her a year maybe less. Fortunately, she turned out to be one of the statistical anomalies who has lived years beyond her prognosis. But with this good fortune, there have also been unique challenges. As her treatments drag on, her cancer is now resistant to first-line therapies. There is no cure. There is often not even a prescribed course of treatment, just a set of options, which must all be weighed based on their potential efficacy and side effect.

As a caregiver, I often feel a looming sense of uncertainty about her future as well as my own. As I think about finishing my thesis within the year, I cannot help but wonder how her cancer could affect whatever planning I do. I cannot predict how her next round of treatment will go, what kind of response she will have, and how she will be able to manage the side effects. Still, I am glad for the uncertainty because in it there is hope.

Earlier this year, I was driving home from an appointment with my mother’s radiation oncologist when an interview with Katherine Russel Rich came on the radio. Rich has lived with advanced metastatic breast cancer for over 18 years. Hearing her story and listening to her familiar experiences was encouraging to me. I thought capturing stories like hers and my mother’s could be inspiring to other patients living with incurable cancer and could raise awareness about metastatic cancer as a chronic illness rather than a death sentence.

2 comments:

jason j said...

we should talk more about this sometime.. i went through a similar thing with my mother too.

Anonymous said...

Kristin-you are so strong! I LOVE your idea and I can't wait to watch your documentary. I'm so inspired by your mother's story already and you've barely starting telling it!