Beyond the swamp of confusion: What we CAN do about cancer

The latest doubt expressed in the cancer world is in regards to the mammogram, long (and still) the most commonly available and utilized screening method for breast cancer. Although we have ultrasound and MRI technology, those methods – especially the MRI – are not routinely used as annual screening tools, likely due to their being more expensive and less accessible. They are more typically used when a mammogram or manual exam detects something of concern.

The American Cancer Society, as detailed in this New York Times article, has changed its recommendations for when and how often women should have mammograms. Previously, it was recommended that women begin annual mammograms at the age of 40. Specifically, the ACS now recommends that mammograms start at 45, not at 40; that they be performed once a year until age 54 at which time they should occur every two years for women who are “healthy and likely to live another 10 years;” and that manual exams not be used as a detection tool by any health professional on “women of any age who have had no symptoms of abnormality in the breasts.”

This op-ed piece written by a breast surgeon and two breast radiologists (all women) details how the authors “profoundly disagree” with the new recommendations, to the extent that they convey their wish to no longer be involved or associated with the American Cancer Society, even after receiving awards from the ACS for their work. I rather agree with them because, despite whatever statistics and/or actuarial calculations lie behind these recommendations, I'm still alive thanks to mammography and manual examination (this photo shows me in the midst of chemo in 2010).

This is following news earlier in the year that doubted the effectiveness of surgery in cases of DCIS (ductal carcinoma in situ) breast cancer. This is an early stage (often called “stage 0”) cancer in which the cells have not yet left the milk duct, so it is not yet invasive, although it is “a possible precursor to a deadly tumor,” as this article reports. According to a recent study that followed 100,000 women with DCIS for 20 years, the women were no more likely to die from breast cancer than women in the general population, despite surgical interventions such as lumpectomy and mastectomy, and that in fact the majority of the women with DCIS who died did so despite surgery. Furthermore, the study saw no difference in risk of developing metastatic disease between women who had lumpectomies (the majority of the survey participants) and women who had double mastectomies, even though it was expected that the more radical surgery offered those women increased protection.

Doubts about cancer diagnosis, treatment, and prevention extend beyond the world of breast cancer. Earlier this year a surgeon wrote this piece about the difficulty of determining how to predict and treat blood and bone marrow cancers. He sees beauty in the idea of targeting treatments to the genes that cause cancerous cell development – but, as he says, “the problem is that cancer rarely is that simple, or that easily fooled.”

Then there are the deeply confusing stories of cancer researchers and physicians who, despite their intelligence and extensive experience in the field, access to a wide array of treatment options, and what I can only imagine is extraordinary care from medical personnel who are likely to know them well, die of cancer way too young. Dr. Carolyn Kaelin was certainly one. The founding director of the breast health center at a prominent Boston teaching hospital affiliated with Harvard, she ended up going through a full course of treatment for breast cancer including chemo, which caused a loss of feeling in her hands and ended her career as a breast surgeon. After shifting her career focus to advocacy and writing, she was later found to have a glioblastoma, a deadly brain tumor, unrelated to her earlier breast cancer. She died earlier this year. Her obituary is found here.

So this is what we face: Doubts cast on our most relied-upon cancer screening methods and treatments, cancer researchers encountering ever-increasing complexities even as they make important progress, and top-notch medical personnel unable to save a beloved colleague after pulling out all the stops. Where does that leave you and me? Should we obsess over our health at every moment and, if we are diagnosed, bankrupt ourselves and our families to try every treatment and specialist we can find? Should we throw up our hands and give up worrying about anything and eat, drink, and carpe diem? Something in between?

We crave the easy, universal answer. Read through countless cancer-fighting food recommendations, and you’ll see how desperate we are to find the one “sure thing” food that will take the worry of cancer away from us. Peruse the innovations in cancer treatment that have emerged over the last decade, and you’ll see how much researchers hope to find the one key to preventing the development of cancerous cells in the body. However, it seems to me that the more we find out, the more complicated it gets, and the further away we are from anything simple. We are living in a time of extraordinary complexity, uncertainty, and transition. The stress we feel over our choices is at record levels. Although of course we need to examine and question our options carefully, the proliferation of choices leads many of us to second-guess ourselves to a potentially harmful extent. Should I have had a different imaging? A different surgery? A different doctor? More treatment, less treatment, other treatment, no treatment? Even if we have chosen an exceptionally effective course of action, we can struggle enormously if we sink too far down into the swamp of doubting ourselves and our caregivers.

So what can we, and the family members we care for and about, possibly do to improve our chances of surviving and thriving? My answer is perhaps mundane, but I’ll offer it anyway:

1. Know, and pay attention to, your body.

2. Live as healthfully as possible.

3. Have regular screenings and examinations with reputable and experienced medical personnel.

4. Trust your intuition.

5. Know every day that you are doing the best you can for yourself.

This is what I keep coming back to. I don’t believe there is a sure thing. How can there be, when I got cancer with no risk factors, and plenty of people with risk factors don’t get cancer? When my cancer was found with a mammogram, but I have close friends whose mammograms did not find cancers of significant size? When some friends found nothing with a manual exam but were diagnosed with cancer anyway, and others – like myself – were diagnosed in part through manual examination? When a friend who had breast imaging with a negative result was found to have a large tumor when imaging was repeated only six months later?

If you are diagnosed with cancer, I would recommend a modified version of steps 1 through 5, plus one important addition:

1. Keep knowing, and paying attention to, your body.

2. Keep living as healthfully as possibly.

3. Consult reputable and experienced medical personnel for as much information as you can reasonably process.

4. Trust your intuition as you choose providers and treatment.

5. Know every day that you are doing the best you can for yourself.

6. Continue to gather information and ask questions, so that as things change, you will have the opportunity to take new actions if they make sense to you and to those you trust.

Each of us is so incredibly unique biologically, chemically, experientially, intellectually, emotionally, spiritually. It seems that one treatment cannot possibly have an identical effect on such different beings. I’m still here, for example, whereas some others I’ve known who bore a remarkable similarity to me, in terms of diagnosis and treatment and lifestyle choices, are not. I have struggled with this, and with the question of why, which has proven so far to be unanswerable (and perhaps best avoided). But thinking about the deep mystery of our uniqueness helps me begin to comprehend how people with nearly identical diagnoses and treatment protocols could have wildly different outcomes.

What do we really know about cancer? Not so much, yet. What can we do about it? A lot – if we can gather information, sort through it with caring and skilled professionals, and trust ourselves to make choices in medicine and in life that work best for each of us.