There are some 13.7 million cancer survivors in the United States alone. Of those, 2.9 million are breast cancer survivors. All of us have found our way through those first difficult months and years following diagnosis. Treatment itself was one thing. Trying to adjust to life after cancer was another.
But by any measure the guidelines are good news for any man or woman in treatment now. The 100-page report covers eight distinct areas:
- anxiety and depression
- cognitive function
- exercise
- fatigue
- immunizations and infections
- pain
- sexual function
- sleep disorders.
Then as most of you know, in 2005 the Institute of Medicine published its landmark consensus report Lost in Transition, which made the case for survivorship care. Six years later Livestrong held a collaborative symposium of stakeholders, health care professionals and advocates to begin a consenus building project to articulate the "essential" elements in surivorship care.
A later IOM report, "From Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs," recommended that psychosocial screening be part of quality cancer care. This is well covered in NCCN guidlines but why other concepts from Lost in Transition and Elements didn't become part of NCCN's report aren't clear, even though both reports are mentioned. NCCN surivorship care guidlines, for example, don't even support the need for a survivorhip care plan or treatment summary. While we all understand that there's no economic incentive in place for this let's get serious. A one page print out is not rocket science. Both "Lost" and "Elements" stress the need for education - of providers and patients - and coordination of care. NCCN's guidelines don't venture that far.
NCCN's guidelines are directed at professionals. How this material will make its way from the nation's 21 comprehensive cancer centers to the community setting, where the majority of women are seen, is not explained. Color me skeptical but I see a packet of information stacked on an oncologist's already stacked desk. Neither were there any outside patient advocates or organizations on the committees as listed in the report. This makes no sense to me. You'd think that patient advocacy networks would be tapped for their assistance and guidance in moving this material to where it needs to be. Let patients know and let them help. No one is more invested in assuring the provision of good survivorship care than we are.
A few other take-aways to the report:
- at least 50% of (all) survivors suffer from some late effect of cancer treatment. The most common problems seen are pain, depression and fatigue.
- anxiety and depression affect up to 29 percent of all survivors; and some 19% meet the diagnostic criteria for post-traumatic stress syndrome.
- the increasing trend toward more treatment, combined chemo, radiation, hormone therapy and surgery can result in more late effects. One example was the study from last week on increased of heart disease for women receiving radiation therapy.
Believe me, I am far from done with this topic. Sometimes It seems the more we do to treat - not cure - cancer - the more potential for problems there are down the road. We can't go back and undo treatment we selected, decisions we made when faced with a difficult, confounding disease. I do believe we can do a better job with survivorship though, and these guidelines are one place to start.
I hope you'll take a look at the report. You will need to establish an account but you can access the material by registering with your email address here:
I hope you'll take a look at the report. You will need to establish an account but you can access the material by registering with your email address here:
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Interesting note: I just saw a news release from NCCN announcing that two additional cancer centers have been added to their network. They are UC San Diego Moores Cancer Ceneter and University of Colorado Cancer Center.
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