Sunday, August 22, 2010

Where There's Knowledge Hope Follows

The LiveStrong booth at the World Cancer Congress,
August 20, 2010 in Shenzhen, China.
This past week two significant reports sent waves through the cancer universe.

The first had to do with the global financial burden imposed by cancer and the other -- if not proof then -- a clear finding that palliative care can not only ease the suffering of terminal cancer patients but actually extend their lives.

First -- the Global Cost of Cancer

While understanding of the global extent of cancer has grown, for the first time ever a study conducted by the Lance Armstrong Foundation and the American Cancer Society attached a number to its worldwide economic toll: $895 billion. This figure -- or 1.5 percent of the world's gross economic product -- doesn't even include the cost of treating the disease but represents financial losses from premature death and disability.  If those medical costs were included the figure would more than likely double.

Another way:  cancer's economic impact represents the "....single largest drain on national economies, compared to other causes of death, including HIV/AIDS and other infectious diseases."

And another way:  women in the United States (and probably UK, as well)  diagnosed with breast cancer have an  84 percent chance of surviving for at least five years. In Gambia? 12 percent. This from CanTreat International, a working group of worldwide cancer experts. Their work also emphasized the looming cancer crisis in developing countries.  Both the CanTreat and LiveStrong/ACS reports were presented at the 10th World Cancer Congress in Shenzhen, China.

Our advocacy is not only essential to women here, but we need to embrace it as an asset to share with our sisters around the world and raise awareness, diminish stigma, and improve screening and treatment. Let's continue to form alliances with other women, teach each other, and listen to each other's experience.   A worldwide cancer burden isn't something "out there" or "down the road."  It's now.

Knowledge Brings Hope 
The phrase 'palliative care' may be one of the most misunderstood terms in the entire cancer vocabulary. Years ago I often considered palliative care as a sad and  parallel universe.  It was a place I wanted to avoid when I was in treatment, as though to even brush into the words would mean that my boat called hope had shipwrecked.

Not so.

This week a finding reported in the New England Journal of Medicine, arriving as it did on the heels of Atul Gawande's stunning article (“Letting Go”) in the August 2 The New Yorker – defined clearly what palliative care is and what it can do. 

In the study, patients newly diagnosed with aggressive lung cancer were provided palliative care in addition to standard oncology care. The other group received standard oncology treatment which primarily involved chemotherapy. The patients who received palliative care and standard chemotherapy had less pain, less anxiety and less depression and also lived almost three months longer.  

Three months may seem like the blink of an eye when you are in the thick of things, but consider how much that time means to a family supporting one of its members at the end of life.  Every day spent comfortably in the company of loved ones is a time of grace. 

In essence palliative care, which literally means to soothe or relieve, is a “seamless model of care across a range of care settings.” A team composed of multiple specalties designs care to provide the patient and family with the best possible quality of life.  This can range from coordinating community services to supporting decision making and controlling pain, in a hospice, hospital or home setting.  Above all else it is holistic.

The study’s author, oncologist Dr. Jennifer S. Tegel, said that doctors and patients “traditionally see palliative care as something extended to a hospitalized patient in the last week of life.  “We thought it made sense to start them at the time of diagnosis.  We were thrilled to see such a huge impact. It shows that palliative care and cancer care aren’t mutally exclusive.”

Palliative care and cancer care aren’t mutually exclusive.

It also seems to me that the combination of the two could be called wise medicine.  Humane. We may be approaching a time when medicine makes sense, when we, as patients seek physicians to help guide and advise us over and through difficult passages.  Oncologists can provide a set combination of tools to tackle your cancer, or mine.  But a bag of chemo or a round of proton therapy is never enough.  Everything that promotes healing – physically, emotionally and therapy – comes into play and is part of the plan.

This can mean letting go of the “security blanket” of traditional care, when walking away from a hospital or cancer center is an act of great courage.  It does not mean you must walk away from medical support.  A friend in Minnesota wrote movingly of her husband’s decision to let go of threatment and face “life’s great, last adventure” at home.  She posted a photo of the view he had from their bedroom window on a clear and icy January morning. He died not long after that, with none of the agonizing and intrusive measures Dr. Gawande’s article so clearly decribed.  

n  For your courage and grace BA, and in memory of Jack

Note: Something interesting from the NYTimes article the NEJM study:  Dr. Jennifer S. Tegel herself has been a cancer patient.  Sometimes it takes a cancer patient to break ground and help move care another step forward for others.  Hats off Dr. Tegel, with continued wishes for your health and happiness.

Additional information:

1) Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO) offers an incredible resources at including downloadable material on state-specific guides, legal considerations, planning ahead, and more.

3)  On Twitter:  Wednesday evening Tweetchat with professionals in palliative medicine.  Use the hashtag #hpm to bring up the discussion and confirm time and topic @HPM.  This caring and commitment of the men and women in this group shines through loud and clear.   Wonderful people.


Annemieke said...

Daer Jody,

Wow, once again a very moving blog fiLled with information that will help me with what we talked about: let our actions speak louder than newspapers words. You always manage to turn dry facts into a story that captures my heart and in that way make me a better cancer fighter. Thank you again for that. Love, annemieke said...

I had no idea that's what palliative care was, and like you, I didn't want to get to close or learn too much for fear it would somehow latch on to me. And I consider myself an educated woman! Thanks for the info.


Lauren said...

I just wanted to add another resource to find care: The Cancer Support Community. They offer fantastic support groups, yoga classes, cooking classes, and so much more to help you through everyday life with cancer. Find support in your local community at

Lauren (