Cancer screening and treatment cannot focus on mortality alone

When patients undergo medical treatment — like radiation therapy for prostate cancer, for instance — little is reported about the lifelong side effects that can arise.

That’s because outcomes have disproportionally focused on survival.  Whether a patient has incontinence, impotent, or blood in the urine stemming from prostate cancer therapy has largely been overshadowed.

In a recent New York Times’ column, Pauline Chen highlights the Patient-Centered Outcomes Research Institute.  According to health policy analysts,

the potential of such an enterprise will be fully realized only if the institute supports initiatives and strategies that place the patient experience not only front and center in research but also smack in the middle of the medical mainstream.

Obtaining patient experiences after treatment is important.  Quality of life sometimes can be just as, if not more, important than survival itself.

This segues into the recent findings from an NIH trial showing a lung cancer mortality benefit from annual screening chest CT scans.  I wrote about this last week, saying,

there remains a concern about the risk of cumulative radiation exposure [from] an annual chest CT … And finally, there is the concern about incidentilomas that screening CTs will bring. Incidental findings that result from a screening CT may necessitate further workup that may only confirm a benign condition. Furthermore, these tests tend to be more invasive — like a biopsy, for instance — which can put the patient at harm.

The Times also wrote cautiously about the findings, not only highlighting the cost — potentially reaching into the billions of dollars — but also the number needed to treat:

Some 300 people had to be screened to save a single life; the other 299 received needless radiation. There were scads of false positives — abnormalities that required further CT scans and sometimes biopsies or surgery to rule out cancer.

It’s important to highlight the patient experience after screening.  When it comes to lung cancer, that means what happens to the majority who may have to undergo potentially needless tests stemming from false positive CT scan results.

That’s why we need to proceed with caution when it comes to screening.  Mortality cannot be the only endpoint that matters.

 is an internal medicine physician and on the Board of Contributors at USA Today.  He is founder and editor of KevinMD.com, also on FacebookTwitterGoogle+, and LinkedIn.

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  • http://www.sarahbrannonscancerjourney.blogspot.com Sarah Brannon

    Hallelujah!

    I am a 31 year old cancer survivor 19 months in remission. My body was blasted at full power for 8 months, during which I nearly lost my battle due to PCP pneumonia and MRSA. When I was declared to be in remission in March 2009, I expected to feel a little better everyday, cumulatively gaining energy as the weeks and months passed.

    Instead, several months out of treatment my team of doctors and I realized that I was not, in fact, recovering as expected–even if at a slower pace than normal. My long-term side effects that I (nor, to be fair, my doctors) expected are: full-blown menopause; autonomic dysfunction with severe, painful, and ADL-limiting peripheral neuropathy; exertion-induced acute asthma; GI distress–triggers still unknown; acid reflux so painful as to trigger migraines after eating anything slightly “bad,” (I have always been nutirion conscious and have an otherwise healthy and balanced diet, although I do enjoy the occasional mexican food outing with friends); 80% osteoporosis; and seemingly irreversible B-12, Vitamin D, iron, and folate deficiencies.

    My symptoms were so bad that I eventually lost my job. As it stands, employers are much more forgiving and sympathetic if an employee is in active treatment. Once the word “remission” is uttered, it’s back to work as usual.

    I’m a generally positive person but I went through a severe depression during the year that these horrible side effects/disorders revealed themselves. Now I can say with confidence that–heaven forbid I were to relapse–I will opt out of treatment. I am finally feeling wonderful with medication and close monitoring by my various doctors, and to have to regress in any way would be, without a doubt, out of the question.

    I don’t suggest that oncologists put the fear of God into every patient, but I do recommend that more emphasis is placed on quality of life during and after treatment. In fact, I would be delighted to find that emotional support in the form of counseling is someday made available to all cancer patient undergoing the fight of their lives.

  • Anon-MD

    I’m the only one you’ll see write this, but I am gonna say it loud and clear –

    Screening for any disease is too personal, too expensive, too controversial and too important to be left to a government fiat.

    The only way to properly screen for any disease is for a patient to decide, after a good, ~thorough~ discussion with their personal physician about the risks / benefits and controversies and then decide for themselves if it is “worth it” to proceed

    And since “worth” is an individual decision which we all weigh differently, only the patient should decide how much to pay for screening. And only the patient should pay for screening.

    True, some may not take advantage of screening, but as the recent USPSTF controversy on mammograms illustrated, it isn’t even clear who really “needs” screening anyway … it is a personal decision, not a societal one, where to draw the lines between risk and benefit

    And since each individual draws those lines differently, each individual needs to accept the medical and financial responsibility for their decisions.

    It is the right thing to do …