A journey with cancer

At first, it’s nothing—or almost nothing.

A cough that won’t go away; a tiny lump; a pain that feels different, more persistent than before; blood where there shouldn’t be any; unusual fatigue; unexplained weight loss. The cough will go away, the person says to himself or herself. The lump is so tiny that it can’t be important; there were only a few drops of blood. It’s normal to be so tired, what with all the responsibility and stress. And who wouldn’t want to lose a few pounds? It will go away, the person says to himself or herself, but then it doesn’t. And so the journey begins.

A trip to the doctor, just to be sure.

Just to rule out something sinister. There’s nothing to be worried about, but one never knows. Sometimes, a person sees his or her doctor for an annual checkup, suspecting nothing, because there have been no symptoms, no little warning signs. In this case, the journey begins here, in the doctor’s office.

There is, in fact, a problem.

The person is told that his or her test results are not normal and that additional tests are in order: a scope, a bone scan, computed tomography, magnetic resonance imaging, positron emission tomography, a biopsy. The words spot, bump, lump, abnormal cells, and atypical cells are mentioned. And although the word cancer is not used and the doctor speaks reassuringly, the effect is the same. Something is wrong, very wrong. Otherwise, why would all of these extra tests and specialist appointments be happening so quickly? One day, the person felt fine—in perfect health—and the next day he or she is ill, perhaps even gravely ill. How can that be? Try not to worry, the doctor says. We have a treatment and it should go well.

Treatment begins.

Surgery, chemotherapy, radiation, brachytherapy, immunotherapy, Gamma Knife. And then the person finds himself or herself in an oncology unit reclining chair, waiting for treatment according to protocols that have been clearly and carefully defined. An entire arsenal of therapies for fighting the disease. For beating it. But mostly for restoring health, as the end goal is healing.

The unknown.

As the journey continues, the person walks hand in hand with hope and fear. Hope says, maybe this whole thing is a bad dream. Hope says, maybe the cancer can be beaten. Fear asks, what about that new symptom? Is the cancer back? Either way, there is a long journey of waiting and wondering ahead. For how long? No one knows.

And then it’s back.

Sometimes—often—the disease comes back. There is a second or even a third course of chemotherapy. Experimental treatments. Research protocols. Searching the Web for a miracle—for some treatment that has escaped the notice of the specialists. Perhaps a prohibitively expensive treatment only available in a foreign country. As the disease progresses, the person loses the ability to care for himself or herself and needs home care and help from others.

The end of the road.

And then, there is a realization that the person cannot be cured. His or her caregivers are exhausted and a decision is made to move the person to a facility. There are conversations about not prolonging suffering and about comfort care. Despair. Palliative sedation. Physician-assisted death.

Not every person with cancer has this journey.

Great progress has been made in the treatment of many different types of cancer. Some cancer patients survive. For many, the journey lasts for years. But cancer is such a tenacious disease and it inspires such fear. Rarely is the word cure used, as if there were a constant fear of the cancer coming back and of a journey that will never be over. Instead, the cancer is described as being in remission.

Where are family physicians on this journey? They are mostly at the beginning and at the end. Cancer treatment is highly specialized, well beyond the scope of practice of most family physicians. But that doesn’t explain why they do not accompany their patients, offering help, advice, and support every step of the way.

This month’s issue of Canadian Family Physician features a series of articles on cancer. I draw your attention to page 821 and the article titled “Patients’ experiences with continuity of cancer care in Canada. Results from the CanIMPACT study.”¹ The results of this study underscore the importance of good communication and a positive relationship with front-line care providers.

Family physicians definitely have a role to play throughout the difficult journey awaiting their patients with cancer.