Treating cancer needs to be an individual patient decision

The heresy of one age becomes the orthodoxy of the next.
-Helen Keller

The patient returned to my clinic several years after her original thyroid cancer surgery. “The cancer blood test never went completely back to zero,” she told me. “We knew there was cancer in there somewhere. Finally, the new ultrasound machine found it! I guess it is time for more surgery!”

I guess. In my patient’s situation, the latest high resolution diagnostic test had identified a slowly growing, small cancer. However, there are no studies to show that taking out these small cancers has any significant, long-term impact. At two national meetings I attended in the past few weeks, surgeons from all around the world scratched their heads and debated the merits of aggressive surgery versus careful observation without coming to any conclusions.

Two recent papers help point to why this is such a difficult topic.

The first study, titled “Overdiagnosis in Cancer” published in the Journal of the National Cancer Institute, makes a very convincing argument that screening and very early detection can often identify cancers that would otherwise have never caused any problems.

As evidence, the investigators demonstrate that the number of people who develop some types of cancer (prostate, thyroid, breast, kidney, and melanoma) has doubled since 1975 with no increase in the number of people dying from these types of cancer. Further, they cite autopsy studies of people dying of non-cancer diagnoses that have detected tiny, harmless cancers in as many as one-third of people. Chasing down and treating these “overdiagnosed” cancers carries both risk and cost. An accompanying editorial notes that policies must “reduce the burden of cancer death AND cancer diagnosis.”

The second study looks at the rapid growth in the use of follow-up scans in older cancer patients (mean age = 76). The paper, published in the Journal of the American Medical Association, found that the use of PET scans grew 36% to 54% each year between 1999 and 2006 for Medicare patients with cancers of the prostate, breast, colorectum, lung, as well as leukemias and non-Hodgkin’s lymphomas. For the lung cancer patients, there was a 14-fold increase in the use of PET scans over the seven years! Other tests grew at a slower rate. The overall cost of imaging grew at 5% to 10% each year.

So, what does this mean? Despite the continuing good news that fewer Americans are dying of cancer each year, there are more and more people being treated, thanks to sophisticated screening procedures capable of detecting smaller and smaller abnormalities. At least some of these smaller cancers would have been harmless. At the same time, spending on scans and other imaging studies is growing much faster than inflation. The growth rate in expenses contributes to the spiraling costs of medical care.

Some things that we always felt were “true” about cancer deserve another look. We were all raised to believe that cancer, left untreated, was uniformly fatal. We always knew that small cancers are more curable. For many people, these statements are certainly true.

For other people, though, it is equally true that cancer is more of a chronic disease, like hypertension or diabetes. It is also true that many of us have cancer and will never, ever know it. The data call for changes in how physicians and people with cancer understand what the diagnosis means.

Change might be great for society, but what about each individual? Will we tolerate having less care? Witness the recent upheaval over the evolving recommendations for mammography in younger women. What patient, knowing that he or she might have a cancer inside, would ever agree to just let it be?

When the door to the examination room closes, we sit with our patients and make decisions. Do we operate? Do we watch? Do we order a scan or don’t we? Do we try something else? As much as we love certainty, there are times when we proceed based on the available research and our best guesses.

My patient elected to have surgery to remove the tiny recurrence knowing that there were real risks to the surgery and that there might be no benefits. I was never convinced that what we did made a difference in her long-term prognosis, but I certainly hope it was money well spent.

Bruce Campbell is an otolaryngologist who blogs at Reflections in a Head Mirror.

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  • stargirl65

    Many of my patients have a hard time with the new recommendations for cancer screening. I try to explain to them that new recommendations for treatments and screenings for cancers are about getting smarter about understanding cancer. We are trying to cater to each individual person and their particular cancer. That we need to find out which cancers are going to kill us and focus on treating those aggressively. The current problem is trying to figure out which are aggressive and which are indolent. Unfortunately for the general public cancer equals death and disability unless aggressively treatment is persued.

  • Marilyn Blundin

    “What patient, knowing that he or she might have a cancer inside, would ever agree to just let it be?”
    Certainly not me (61.5 y.o). When I was diagnosed with breast cancer (58 y.o.) and later bladder cancer (60 y.o.) I wanted it out yesterday. It was torture waiting for the needle biopsy results even though I saw the answer on the doc’s face (and his team) when he looked into the microscope. But then I worked in a hospital for almost 20 years and thought that I understood what came next.
    It’s also true that research direction and outcomes are changing as rapidly as the tumors and the recommended international standards of treatment.
    My education curve accelerated after my diagnosis on a need to know basis. Most people don’t want to even talk to sick people much less educate themselves thoroughly to be their own advocate. Google MD degrees are dangerous and to cram for that exam is just hell. That said, thank goodness for the NIH on line. I posted this link on the discussion boards under “Clinical trials, news, research, etc.” and “In Season Recipes” The ladies at the Recipe site appreciated the information.
    So, it’s now 4.5 yrs. down the road from the bc dx (IDC 1.5 cm, stage1, grade1, ER+PR- Her2 5%). I stopped Arimidex at 3.5 yrs. because I became a cripple both physically and mentally. Talk about secrets….it took the ladies on our boards screaming directly to Astra Zeneca and the FDA to change their info insert and report it like it is…not like they wanted to market it to be. My decision to stop was not the docs. I did share my research to them and we are still friends. I see them yearly if not more. I even share recipes….for food and my own health. BTW I no longer use a cane or anti depressives and I don’t need carpel tunnel surgery any more. I do take much more vitamin D3, calcium and magnesium.
    Side bar: I wrote to a Doc at Harvard (previous research in Italy) about his research of magnesium to control the pain of sickle cell anemia in pediatric patients because I wanted to know why it helped my pain and mental status when NSAIDs didn’t work. I wasn’t interested in going into stronger medication as many pain management doctors suggested. Then I sent that along to my surgeons at Gemelli Hospital. They thanked me. It’s good to share.)
    Don’t give up on any of this just when it’s getting good! Research, communication, integration of common sense with good science. This blog is a good example. I’m thrilled with the direction of these elements to our healthcare. And, no matter what administration, or chairman, or spin city pharmco marketing plan, it’s been my observation that these real value elements keep moving forward and seek their own level….like water.
    Thanks for being a good doctor. We need you.

  • Harriet

    Not sure that I agree that treatment for cancer should be the patient’s decision any more than we would dish out high powered pain killers to anyone who asked. Given that there are autopsy studies out there that show that up to 40% of non-diagnosed women over 40 have been shown to have DCIS and worse at death (and other cancers) it is a mute point as to whether one necessarily want to dive straight in to surgery and chemo.
    It just isn’t as simple as “cut it out”. As we know “cutting it out” doesn’t get rid of a cancer – cancer is probably systemic and we just don’t treat it as such. It is a time for a rethink of our concepts and way of dealing with what is often a chronic disease.

  • gpawelski

    Spontaneous remissions in cancer suggests that the body can heal itself. It seems like most apparently occur in just a few types of malignancies: malignant melanoma, renal cell cancer, low-grade non-Hodgkin’s lymphoma, chronic lymphocytic leukaemia and neuroblastoma in children. However, spontaneous remissions do occur in vastly different other types of cancers.

    The very existence of spontaneous remissions represents a threat to some in the cancer industry. But such anomalies can pave the way to a better understanding of the causes of cancer which can then lead to rational therapies. Historical observations of spontaneous remissions of breast cancer after the onset of menopause lead to approaches of hormonal treatment which is a mainstay of adjuvant and palliative therapy in breast cancer.

    Regardless, spontaneous remissions represent an important clue as to how the body can defend itself against cancer. Researchers should think “outside the box” at this important phenomenon rather than see it as a threat to their conventional thinking and appreciate the insight it may provide to rational approaches to cancer treatment.

    For some common cancers, it is not clear that early detection and treatment actually prolong patients’ lives. Early detection may just mean patients spend a longer time knowing they have cancer, and yet die at the same time they would have died anyway if the tumor had been diagnosed later. A decision to forgo cancer screening can be a reasonable option.

    Literature Citation: Arch Intern Med. 2008;168(21):2300, 2302-2303, 2311-2316.

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