Author Q&A: From Whispers to Shouts: The Ways We Talk About Cancer

As a breast cancer patient and advocate, a former oncologist and a journalist, Dr. Elaine Schattner was well placed to write the history of cancer from the times of very basic treatment to the present day.

Through prodigious research, the author charts public perceptions of the various cancers by a thorough reading of medical literature, popular press articles, radio scripts, movies, television, and more recent social media posts, to produce a fascinating medical and social history of cancer that embraces everything from the past to the future of cancer care.

Schattner's fine book charts the slow but steady advances in cancer care, and looks at scientific advances, philanthropy, fundraising quackery, political actions, celebrity patients, and much more, and she picks up uncanny similarities between discussion on cancers way back in the day, and the conversations we're still having today.

The author's informed research reveals so many interesting facets of the evolution of modern cancer treatments and the perceptions and attitudes of both patients and practitioners to cancer treatments and diagnoses. The philosopher, George Santayana, wrote, "Those who cannot remember the past are condemned to repeat it."

Read my review of the book.

Advances in cancer care over time

Q. You write about how basic diagnosis treatments were in the nineteenth century and well into the twentieth. With minimal patient information on breast cancer, in fact all cancers, how did medical professionals explain the disease and treat women?

A. In general, doctors didn't explain much to patients until modern times. The ethical expectation for practitioners to obtain informed consent before giving medical treatment was not common. Doctors were more likely to simply state something like "you need an operation" or "take this drug" than to explain why those were indicated, possible benefits, and risks including side effects.

What doctors did know about cancer is that solid tumors like skin, breast or prostate cancer tend to spread locally. So, they developed operations to remove early-stage malignancies. Some surgical procedures, like a radical mastectomy or removal of a large part of the colon, even for small tumors, are understood now to have been unnecessarily aggressive and risky. Cancer surgeons typically aimed to "get all of it" out, and that's how they may have explained it to patients.

Oncology was not yet so lucrative, and cancer specialists were rare. Many physicians hesitated to refer cancer patients to experts because, through much of the twentieth century, surgery was not often curative, radiation therapy was toxic, and chemotherapy was said to be worse than the disease. People, including doctors, feared cancer surgeons and "chemotherapists," as medical oncologists were called. Treatments are much better now, of course.

Until recently nurses were trained to follow doctors' orders. In some communities, though, nurses were essential in raising awareness of cancer and the benefits of early detection. Before World War I, for instance, when few people spoke openly about this topic, nurses in and around St. Louis distributed informational pamphlets to women about cancer of the womb and breast.

Awareness campaigns and education about breast cancer

Q. You note the importance of the early awareness campaigns and education for all cancers. Since this has certainly carried through to the modern times, why is this so important and is it really just a fundraising campaign slogan that is wearing thin on patients who are weary of this message given that around a third of all patients will progress to Stage IV of the disease?

A. 
Awareness of cancer's treatability remains important because so many people are fatalistic about it. As I write in my book, people feared cancer so much that they hesitated to get screened or accept appropriate care. This is still true for some individuals and in some communities.

It's not true that a third of all patients with early-stage breast cancer will progress to Stage IV disease. That much-shared statistic lacks evidence and serves not only to drive patients' fear of recurrence but, also, to discourage care for early-stage tumors because people might, mistakenly, think "what's the point?" People should know that stage III breast cancer is far more likely to recur after treatment than Stage I, and so finding breast cancer when it's still small is much better for patients.

Financial toxicity of cancer in the US

Q. I read about the financial toxicity of cancer treatments and nowhere is the situation as bad as in the United States. Why is this the case?

A. U.S. healthcare is profit-driven and largely private. Financial toxicity occurs when people have to pay for medical treatments they can't afford. Patients are forced to cut back on recreation and travel, or basics like food; some wind up in debt, losing homes, or bankrupt. In most other high-economy countries, a government-based medical program provides at least basic cancer care. Even after the Affordable Care Act(a.k.a. Obamacare) was passed, several million Americans remain uninsured and, among cancer patients with insurance, many need to pay thousands of dollars in out-of-pocket expenses.

As things stand, exorbitant drug prices preclude many patients from receiving the best cancer treatments. Many insurers won't pay for targeted cancer treatments until older drugs have "failed" to induce a remission and by then, typically months later, a good response is less likely. Some insurers deny coverage for genetic and other molecular pathology testing of cancer, so oncologists and their patients can't learn if a precision oncology drug might be of benefit. These are real medical harms that result from high prices.

I worry that future budgetary constraints on public U.S. insurers, Medicare and Medicaid (which is state-dependent), will limit patients' access to new cancer drugs.

Pink hoopla and breast cancer in men

Q. Fundraising, which you must admit often manifests itself as "funraising," appears paradoxical. Is this what I call, pink hoopla, the best way to get the message across and might it be blindsiding people into thinking the disease in gender specific?

A. Ten years ago, there was a lot of anger expressed, mainly on the web, about cancer and charities. Patient advocates were criticizing one another about organizations' fundraising styles with tag lines like "pink ribbons won't sure cancer." That's true, of course, but as I report in my book, many people who want to be supportive of people with cancer prefer to actively participate, as in a walkathon or danceathon. In fundraising, upbeat and bright-themed events may be more effective than die-ins or straightforward "write-a-check" campaigns.

So much about breast cancer is pink-labelled, which is understandably off-putting for affected men and their loved ones. It's also misleading because breast cancer affects men and people need to know that.

A reason for hope

Q. I've noticed that you're really keen to convey the fact that, while there is yet no cure, advances in breast cancer treatments in the past 100 years have given patients reason for hope. What do you regard as the most important advances, and how important is this to patients you might treat today, especially those with advanced breast cancer?

A. I'm keen on precision oncology. I believe that if doctors prescribed treatments that match patients' particular tumors, they would enable more remissions at lower cost.