Thirteen years ago I received a diagnosis of an aggressive form of prostate cancer, yet I still don’t think of myself as a “survivor.” In fact, when someone attaches the label to me, I feel uncomfortable. I’m living with cancer, not surviving it.

 Surviving—A Zero Sum Game

 Surviving is a zero-sum game. Either you live, or you die—there’s nothing in between, just like there isn’t a “little bit of pregnancy.” If you survived cancer, the implication is your treatment eliminated the disease. It was either cut out, incinerated with radiation or dissolved by chemotherapy.

 Your oncologist, radiologist, or surgeon rid your body of cancer. At least, that’s what the physician and those with cancer desperately want to believe. But is it possible to dismiss the life-ending properties of something that once lived within us?

Television commercials for cancer centers are upbeat, suggest shortly we won’t have to live with cancer, since the cure is “just around the corner.” For those of us with active cancer and understand timelines for the development of new treatment protocols, “just around the corner,” can be the distance between San Francisco and Tokyo.

My guess is a minority of people who had cancer feel “cancer-free.” They certainly are in the minority of people I’ve coached. Their oncologists may have assured them the cancer is gone, but the thought lingers, “What if they didn’t get it all?”

Since my prostate cancer cells were found in the lymph nodes and beyond the surgical margin, I never had the luxury of wondering if it was gone. I know cancer will always be my constant, unwelcome companion; my oncologist and I will be stuck in a defensive game until a cure appears from “around the corner.”

The Thought of Cancer

As someone who coaches people how to live with cancer, I often hear “What if…” thoughts from people who are in treatment, just finished treatment, or have been in remission for many years.

The use of the word “survivor,” implies that the cancer is gone; something few us readily accept. Thinking of us as “survivors,” hides the disturbing “what if,” scenarios we construct during those quiet times when frightening thoughts find their way to our consciousness.

Adaptation, Not Surviving

While I never think of myself as a “survivor,”  I do view myself as someone who has learned to adapt to cancer. Unfortunately, many people confuse “adaptation” with “acceptance.” When I realized my cancer would take away many of my most treasured activities, I focused on what I could do to modify the activities. For example, marathons were out of the question after the hormone treatment began, but that didn’t lead me to stop running. I substituted short jogs in an idyllic setting. Was it the same? Of course not, but it was better than sitting on a couch lamenting the loss of a favorite activity.

Continue your support of us, but frame it in terms of helping us adapt to the physical limitations the cancer or treatment imposes and the psychological stress we experience knowing there is, or may be something inside us with the capacity for taking our lives.

So when your loved one appears less than jubilant after receiving the physician’s finding there is no evidence of cancer, understand the “thought” of cancer can be as powerful as a positive result.

 

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12 Responses

  1. Charles (Chuck) Maack

    Hello Stan,

    The word “survivor” simply means someone has survived an event that otherwise could have meant their death. So, it certainly does apply to any cancer patient whether their cancer having been considered totally eradicated and they are past treatment, or has yet to bring about their death because of continuing treatment. Thus, they ARE continuing to “survive” through their and their physicians efforts.

    Here I am since diagnosis in 1992 with prostate cancer that recurred despite early surgical removal as well as salvage radiation – thus, now certainly having become a cancer that could become deadly. With my obvious decision to continue to eradicate or at the least control and manage my otherwise deadly disease with further treatment, I am surely a “survivor” in every meaning of the word, and will be considered so until either this cancer consumes me or I die of some other ailment.

    Reply
    • Stan Goldberg

      Hi Chuck,

      Yes, I agree that “survivor” refers to what has proceeded one (e.g. I’m still alive 12 years post diagnosis). The problem I’ve heard from the people I’ve counseled is that with the term comes an unwelcome perception that they are in battle where survival depends upon how hard a person living with cancer “tries.” They believed viewing them as “adapters” rather than “survivors” was more helpful.

      Reply
  2. Joyce

    You said the exact words I’ve been thinking everyday since my diagnosis of breast cancer 2 yrs ago. Three surgeries, radiation & chemo treatments later, dr say they “got it all”. My sister had breast cancer 10 yrs ago, they got it all… She died in December from metastatic cancer. She was not a “survivor”. So I worry everyday.

    Reply
    • Stan Goldberg

      Hi Joyce,

      I think those of us living with cancer or being told they “got it all,” have the same feelings as you. The difficult part is how to bracket off those fears and adapt to it.

      Reply
  3. Steven

    I have been in the Cancer Research Field for at least 33 years. I have clients with cancer in 10 countries on four continents. So allow me to make a few observations. Way back when, cancer was always known to be a systemic disease, not one “just” located in the breast or prostate or wherever. These were just the organs where it materialized. However oncologists simply decided to switch to an anatomic view, since they could not treat a systemic disease but could some piece of anatomy — by lobbing it off, or radiating that, etc. So in a deep sense, it is never ever the case that they “got it all.” Ever. They can just omit it from view from some anatomic location for now. They check margins and look to see they have cut back until there is “clean tissue.” But research shows that cancer cells may reside say two inches past the so-called clean line. The research world knows that we can only have cancer control, not cancer cure. But patients do NOT want to hear this — understandably — so the bogus notion that “we think we got it all” was invented. It is a pure hypothetical construct that if the cancer is not detected in 5 years, you are called “cured.” They just made that up — mainly because we have 5 fingers on our hands. The bottom line of this discussion is that patients have not nor will they get truthfulness — its’ bad for “business.” So Stan in right — every cancer patient is living with cancer, controlling it to some degree. If survivor were to mean “free, free at last — gawd almighty free” — then no, there is not really any such thing. One last thing: for those of us who are “cancer-free,” it is estimated that there are roughly a 1000 cancer cells formed each day in all of us, which the immune system captures and discards. So we are all in a constant state of cancer-control, with no exceptions. I hope this helps a tiny bit with the discussion

    Reply
  4. Ron Reis

    Stan, the recently published book, When Breath Becomes Air, by Paul Kalanithi supports your comments about “surviving”. It is so well written…a must read for your readers as well! Ron

    Reply
  5. Susan

    Greetings. Just found your blog. I am a bit confused. In your “About” section here, you refer to yourself as a “survivor”, yet your comments here state “…I never think of myself as a “survivor”…” Can you clarify your position?

    Many thanks for your blog. I am Stage IV, Metastatic…and loathe the term “survivor”.

    Reply
    • Stan Goldberg

      Hi Susan,

      Good catch! I had asked my webmaster to change that but apparently it didn’t happen.Thanks to you, I just changed it. I agree with you about the term “survivor”. I would also add the words, “struggle,battle, life and death fight,” etc. As you know adaptation makes more sense for those of us living with cancer. There is no guilt involved in adaptation–We are adjusting to reality. If one thinks of him or herself as a survivor, there can be unintentional guilt when the cancer begins to win. The implication–whether intended or not–is that the person living with cancer didn’t try hard enough.

      I’m never hesitant about giving feedback to people who call me “a survivor.” I know the word comes from a compassionate place so I’m never annoyed when someone uses the term. It does become a doorway for me to talk about why “a person who is coping with cancer,” is better.

      Take care on your journey,

      Stan

      Reply

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About The Author

I am an author of eight books in four languages. LESSONS FOR THE LIVING: STORIES OF FORGIVENESS, GRATITUDE AND COURAGE AT THE END OF LIFE is my memoir of being a bedside hospice volunteer for six years while battling prostate cancer. My next book, LEANING INTO SHARP POINTS: PRACTICAL GUIDANCE AND NURTURING SUPPORT FOR CAREGIVERS will be published in March, 2012 by New World Library and focus on caregiving for loved ones who have a progressive or terminal illness.