THE BLOG

The Realities Of Living With Stage 4 Cancer

06/06/2011 08:29 am ET | Updated Aug 06, 2011

A Frightening Diagnosis
Stage 4 cancer is a condition in which cancer has spread (metastasized) from its original location to other organs in the body. Metastatic cancer is what claimed the life of Elizabeth Edwards nearly four years after it was first diagnosed. And therein lies an important reality: women with metastatic cancer ("mets") may die quickly after being diagnosed; alternatively, they may live for years. Because there is no "cure" for mets, many in this group of women have come to feel that they are the "cast-offs" in the cancer community. They feel that their "incurable" condition generates anxiety in others -- including other cancer patients -- and that they are therefore avoided. Several have communicated to me that they are excluded from regular cancer support groups because their presence would "discourage" or "depress" other cancer patients.

Cancer Treatment
There is no doubt that medicine has made significant advances in the past two decades when it comes to diagnosis and treatment, especially of early-stage cancers, including breast cancer. Today, for localized tumors that have not spread (Stage 1), 90 percent of patients will live another five years, and half will live more than 10 years. In about six percent to 10 percent of all breast cancer patients, the cancer has already spread to a second location by the time it is diagnosed (Stage 2). Even then, however, more than half of these women will survive more than 10 years after treatment.

Despite this good news (and the optimism it generates) the fact is that some women will experience a recurrence of cancer, including cancer that has metastasized to other organs, such as the bones. What we are learning about cancer suggests that some forms of cancer have the capacity to lie dormant for long periods time following successful treatment, only to re-emerge. This can come as quite a shock, especially if the relapse occurs after a period of time when a woman has been cancer-free. Here is the way one woman described it:

"My initial diagnosis was in 1992. I was 47 years old, and it was two months after getting a clean mammogram. There was a puckering in the breast and it turned out to be Stage 2 breast cancer.

I did all the right things: mastectomy, chemo, Tamoxifen for five years. I wore a pink ribbon, I did the cancer walks. And I thought I was safe ... until September 2001, a day or two before the World Trade Center collapsed.

On a routine mammogram, the radiologist said the words that send chills up your spine: "Let's take a few more pictures." It turned out to be stage l breast cancer in the other breast. A lumpectomy was recommended. I wanted to be done with cancer -- not waiting for the other shoe to fall. So I decided on a mastectomy with all the accompanying treatments.

One year later, in another routine scan, I learned the cancer was back and had spread. Neither the scan report nor my oncologist ever used the word metastatic -- both used the term Stage 4. And would you believe, it took me several months to connect in my head that Stage 4 was metastatic! I was in shock. I'd had a bi-lateral mastectomy and still I got breast cancer -- with no breasts!"

This story is unsettling. Indeed, it might be difficult to read, especially if you are a woman who's had breast cancer. As much as we might want to focus, though, on the "survivors," we need to resist any urge, understandable as it may be, to look away from women like the above.

For women with mets the challenge is not to "cure" their disease, in the sense of being "cancer-free." Rather, the challenge they face is to learn to control what amounts to a chronic and ultimately fatal disease. In other words, instead of seeking to be cancer-free, they seek to contain their disease and keep it from spreading. In this regard, the news is mixed: some women with mets die within a few years; on the other hand, some have been living with mets for eight or ten years.

A Support Network
With respect to having somewhere to turn, there is now good news for women with mets: The Metastatic Breast Cancer Network. The MBCN is a national, patient-led, nonprofit advocacy group that was organized by and for women who are living with metastatic cancer. Its goal: "To give those living with Stage 4 disease a greater voice and visibility in the breast cancer community."

Giving women with Mets a voice -- along with devoting more research dollars to developing treatments that promise to control mets as other chronic illnesses can be controlled -- is actually in everyone's interest. It can surely benefit women with mets. But it can also benefit those women whose cancer is not at that stage but who nevertheless must live with the knowledge that cancer "survivorship" is ultimately not a guarantee, but rather a statement of probability. Knowing that should they be one of those who does experience a recurrence, further treatment is available (hopefully with more on the way) should be a comfort to anyone who has had any form -- and any stage -- of cancer.

A Kit That Can Help
The MBCN has developed a "kit" that is available to women with metastatic cancer. It includes brochures that cover such issues as:
· Metastatic Breast Cancer: What Does It Mean for You?
· Questions to Ask Your Doctor
· Generic and Trade Names of Common Cancer Drugs
· 7 Tips for Getting What You Need
· Pain Management
· Treatment Alternatives

This kit can be helpful not just to the woman who has been diagnosed with mets, but also to her caregivers and family. In "Saying Goodbye: How Families Can Find Renewal through Loss," Dr. Barbara Okun and I have laid out a "road map," based on hundreds of interviews, of what families can expect to experience beginning when a loved one receives a terminal diagnosis. This is a long and winding journey, and in our book we try to help people make sense of it and to guide them through it as best we can. Having a kit like the above, as soon as possible after a Stage 4 diagnosis is made, can be one of those things that helps patients and loved ones alike make sense of and take control of a frightening and potentially protracted crisis.

To join the conversation about coping with a terminal diagnosis visit www.newgrief.com.
To obtain a copy of the kit contact MBCN at www.mbcnetwork.org, email to mbcn@mbcnetwork.org, or call 888-500-0370.