Living Long With Advanced Cancer

“How much have you revealed about your cancer”

Living Long With Advanced Cancer

Living With Cancer is published by the Cancer Center at Beth Israel Deaconess Medical Center, a Harvard Medical School teaching hospital.

How much have you revealed about your cancer?

There once was a time when there were three possible phases of life for a cancer patient: being in treatment; being finished with treatment and hoping to stay well; and living with recurrent cancer and knowing the end was nearing. Blessedly, we have come a very long way, and there are now many people living with “chronic cancer.”

I have always disliked the comparison that many doctors use, telling their patients that cancer can be like other chronic illnesses, and suggesting diabetes as an example. Honestly, this has always felt like sugar-coating the truth and minimizing the realities of metastatic or advanced cancer. In spite of my ever-present skepticism, however, I now acknowledge that this can be true. I would leave out the diabetes suggestion, but it certainly is true that many people are living much longer and better lives than was imaginable even a decade ago.

Do we have enough cures? No! But more treatments are available for more kinds of cancer, and most of them work pretty well. A few of them work incredibly well and enable people to have nearly normal lives. Think about Gleevec, a targeted therapy that is used to treat certain kinds of leukemia, lymphoma, gastrointestinal stromal tumors (GIST) and other cancers. It’s a miracle.

This is all good news, but it means that individuals may find themselves in uncharted territory. Instead of being told to go home and get your affairs in order, you are encouraged to go on with your life and imagine you might live for a long time. In one of my groups for women with metastatic cancer, someone referred to this as “living on borrowed time.” Another woman strongly objected to this phrase and said, “We are living on rented time, and the cost is high.”

How does approach living this way? A good summary cliché would be: “Hope for the best and plan for the worst.” This suggestion might, at least, help for a while. Take care of whatever legal or family business needs attention, then put it aside. It’s done, and you can concentrate on living.

It can be very helpful to keep cancer quiet. This is different from the common response to an initial cancer diagnosis. When cancer is new, most of us tell just about everyone and are then grateful for their support and help.

The return of cancer may feel different and more private. Many treatments do not cause hair loss or other intense side effects, so you don’t have to say anything about the situation. I have talked with many women about whether to be public at work. There is no single right answer, and the many considerations include your medical situation, the treatment effects and your work place. You might want to have a confidential conversation with Human Resources to determine your benefits and protections, and confide in a manager.

Beyond that is a wide range of choices. Some people find it very helpful to have at least one part of their life that is cancer-free.

The competing argument is that dealing with ongoing cancer treatment can feel like at least a part-time job. There are appointments, and there may be extra activities like a support group or acupuncture or other complementary therapies. The support and help of people around you may help you find the time and energy you need.

Although it is helpful to consider the options and develop a plan with your doctors, usually you don’t have to make big decisions urgently. It takes up to a year for most people to adapt to these new and challenging life circumstances. Fortunately, you can take your time.

How much have you revealed about your cancer? Share your experience with the BIDMC Cancer Community.

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This blog was written by Hester Hill Schnipper, LICSW, OSW-C, Oncology Social Work Manager Emeritus at the Cancer Center at Beth Israel Deaconess Medical Center.