"Oh, Ruth, I think this is a cancer."
These were the words uttered by Dr. Hiram Cody, a breast cancer surgeon, after an initial physical examination of the wife of a fellow physician, Dr. Peter Bach. And with that simple statement, Dr. Bach writes in the February 22nd edition of The New York Times, "down into the tunnel Ruth and I stumbled, into the strange, dehumanizing, aching, opaque and misunderstood world of cancer doctors and cancer care."
If the above captures the initial reaction of a trained and highly experienced physician, imagine what it is like for someone who has minimum knowledge or experience -- which is, obviously, the overwhelming majority of people. Dr. Bach goes on to describe his experience of having the cancer surgeon use a pencil to create a series of drawings. These depicted the size and location of the suspected tumor, its relationship to the milk ducts where it most likely began, and how it could travel from there and spread to Ruth's lymph nodes.
I recall a very similar experience when I went with my wife to an appointment with an oncologist a couple of weeks after she'd felt a lump in one or her armpits and called her gynecologist. Our oncologist also drew pictures. Even though it was enough to send my stomach into a knot, that actually turned out to be the easy part. It was followed by several long and dizzying explanations of different treatment options and their possible outcomes (including the option of no treatment). These options turned out to be much more complex than I'd ever imagined they could be, both in terms of their intensity (which was referred to as "aggressiveness") and their sequence (chemo-surgery-radiation; chemo-radiation-surgery, etc.). Although my wife is a nurse practitioner, even she found this "tunnel" as Dr. Bach puts it, confusing, dehumanizing and damn scary.
The crisis that begins with a terminal or potentially terminal diagnosis like breast cancer indeed marks the first step down a long and winding road. It is strange, opaque, and confusing, not because oncologists and surgeons want it to be that way, but simply because it is that way. Generations ago there were few options and decisions to be made following such a diagnosis, and patients generally did not survive very long.
Today, thanks to almost miraculous medical advances, there are a great many choices and, consequently, a great many decisions that must be made. And the great majority of patients must make these decisions despite their own limited knowledge. Often their situation becomes even more complicated (and confusing) when several different doctors (none of whom communicate with one another) enter the picture. Under such circumstances whose advice do you take? The doctor you personally like the best? The doctor who works at the most prestigious medical center? The last doctor you talk to?
Interviews with many patients who receive a diagnosis of cancer (along with their family members) validate Dr. Bach's experience. At that critical juncture of his life Dr. Bach was thrust into the vulnerable role of loved one of a cancer patient. As he says, he suddenly found himself without "the white doctor coat as a shield against human vulnerability."
"Vulnerability" is indeed what we face -- and must eventually learn to live with -- when we or someone we love receives a diagnosis of cancer. In the case of breast cancer, the diagnosis is no longer as dire as it was a generation or two ago. Still, while roughly 70 percent of such cases can be made to go into remission, another 30 percent will at some point metastasize. The long and winding road that is cancer, in other words, does not simply come to an end, even though it may become less threatening as a result of treatment.
Our interviews have yielded some concrete suggestions from cancer patients and their loved ones about things to do as soon as possible after you take your first steps down this road. They include:
- Expect the unexpected: Although anxiety is the most typical first response to learning that we or a loved one has cancer, some people report feeling angry or resentful. Such reactions are normal. You may indeed experience anxiety, but don't be surprised if you also experience other emotions.
- Build a support team: Do this as soon as possible. The longer you wait, the more isolated (and confused) you will become. Identify those friends, family members, colleagues, and clergy who you believe you can count on for support, for concrete help, or both. Let them know about your diagnosis and keep them informed as treatment progresses.
- Organize your resources: See if there are a couple of people who would be willing to serve as "point persons" in the months ahead. These would be people whom you can count on to attend doctors' meetings with you (and take notes), do research for you (for example about different treatment options, their prognoses and side effects), and lend a helping hand (for example, babysitting for a mother who must undergo chemotherapy.
- Begin to get legal and financial issues in order: If you have no will, have one made up. Designate a healthcare proxy. Organize your expenses so loved ones can understand them and assist as needed in paying them. And so on.
- Make decisions as a team: Of the many different ways to make decisions about treatment, many people have said that a team approach is best. Although the patient, obviously, has the final word, the team should include one physician who will coordinate the overall treatment plan, along with a small circle of trusted family and friends. For the team approach to work, communication is essential. Each person on the team should know as much as possible about each alternative that is considered. The team approach has the advantage of helping clear the air of the confusion that is often generated by dealing with multiple doctors.
One of the lessons my co-author, Dr. Barbara Okun, and I learned from those who were generous enough to share their stories with us is that doing the kinds of things described above helps relieve anxiety. While we cannot "control" cancer or wish it away, we can begin to take some control of the situation as a whole. The above are some ways to do that, right from the start.