Five Years and Counting

The ubiquitous 5-year benchmark of cancer survivorship dates back the 1960’s, when cancer of all kinds was usually detected only after it had metastasized (stage IV) and thus usually too late for effective treatment.  To be treated and then live for an additional five years with “no evidence of disease” (NED) gave a real poignancy and power to the term “cancer survivor,” since there were not all that many survivors.

5YearcandleIn 1986, a group met in Albuquerque, New Mexico and formed the National Coalition for Cancer Survivorship (NCCS).  One of the group’s first acts was to decide “it was not okay to have to wait five years to think of yourself as a survivor.”  Instead, they define “survivorship” as beginning immediately after diagnosis, and their mission as “represent[ing] cancer patients and survivors in efforts to improve their quality of care and quality of life after diagnosis.”

By that definition and by the tremendous strides made in diagnosing cancers earlier, as well as a growing panoply of treatments, there are more than 13.7 million cancer survivors in the US, a number expected to rise to 18 million (due primarily to an aging population) by 2022.*

Even with these vastly increased numbers of survivors and the more liberal definition of “survivorship,” the five year benchmark remains firmly embedded as a significant milestone in the mind of every man or woman who has endured cancer diagnosis and treatment.  In fact, many survivors, including me, tend to think of several five year benchmarks.

I’ve already passed the 5-year mark for diagnosis (January 22, 2009) and completion of radiotherapy (June 5, 2009).  This coming November I’m hoping to pass the five year mark of having “no evidence of disease” (NED) for my particular version of “high grade” prostate cancer that will be indicated by an undetectable PSA.  (My urologist and I are even gingerly using the word, “cured” rather than “treated with curative intent,” although this will never be a sure thing until I die from something else.)  

What I have not yet passed is the five-year mark for the end of androgen deprivation therapy (ADT), more euphemistically known as “hormone therapy.”  That won’t happen until February 2017.  

It is ADT that makes me appreciate why the NCCS keeps “quality of life” atop its mission statement.  After three years of formal ADT treatment that ended back in 2012, it appears I have officially entered “andropause,” which is to say my testosterone isn’t coming back.  As a result, I continue to experience ADT’s after effects, most visibly, daily hot flashes and night sweats.  These are annoying but do no permanent harm.  Nor is the hair on my arms and legs about to come back, and I guess I’ll just learn to appreciate my perky little breasts.

It’s the invisible effects of ADT that are worrisome, especially the raised probability of metabolic problems, (diabetes) and cardiac events.  Libido is but a memory and there’s the ongoing loss of bone density and muscle mass.  To offset the bone and muscle issues, I’ve tried to be diligent about my diet and exercise.  Nevertheless, it’s frustrating to have been going to the gym these past five years and have no perceptible increase in musculature or even in strength.  I have to be content with maintaining the status quo ante

While we’re on the subject of ADT, I want to mention an important new book with the straightforward title, Androgen Deprivation Therapy, just published by Demos Health, (which published my own book in 2012).  Fellow ADT-experiencer/survivor, Richard Wassersug, PhD, is the lead co-author.  Richard and I have corresponded at some length about the effects of ADT, especially the psychosocial ramifications of living as a eunuch in today’s sex-obsessed society.  I received my copy yesterday and it looks to be immensely useful as my wife Susan and I continue to work on accepting ADT’s physical and emotional impact. Or, as she focuses on the upside, putting it well and succinctly, “No T means no C.”

But, hey, five years and counting—and so much better than looking forward into the murky unknown back in 2009, wondering of I’d make it to three or four years.  Five years has been a gift of life given to me one day at a time.  Now, on to ten years.

*American Association for Cancer Research, “Number of Cancer Survivors Expected to Increase to 18 Million by 2022; http://www.aacr.org/home/public–media/aacr-in-the-news.aspx?d=3038 accessed 6/18/14

Comments

  1. Greg Hoffman says

    Craig,
    I kinda feel like “brothas from different mothas”…such a parallel in our stories. I have such a similar story… Dx in Oct 2010, I’m still waiting for my first “survivor” pin. Radiation in 2011 (Jan – Mar), then ADT from then until now has given me: No body hair to speak of (but why can I still grow facial hair?), constant hot flashes and sweats, my very own set of perky little boob-ettes and a constant fight to not put on weight as ADT patients are often wont to do. I have slowly gotten my weight down by about 5 lbs. since DX, but it is a constant battle. I did the YMCA’s “Livestrong” 12 week program for cancer survivors, It was good, but unless I’m in a constant state of “Bootcamp”, it just isn’t going to work for the long haul. My mental state has been a bit of a roller coaster too. Welbutrin and occasional sessions with a very helpful Psycopharmacologist has helped. Ain’t nothin’ like medical appointments, shots and scans to run your life…But hey! I’m still here! 3 years and 9 months a survivor … working on my first 5. Keep posting, it helps to know we’re not alone. Be well, my friend.
    Best,
    Greg

  2. says

    Ah yes, the old survivor mode…haven’t hit five years yet, but closing in on four.

    I remember clearly my hunger for potato chips while on ADT, and how much weight I gained, too.Both are gone today, but the memory of the side effects of that therapy is vivid. For me, therapy was a shorter period than either of you two and when it ended, I found that testosterone had not abandoned me,

    Still, the lingering effects of treatment, bleeding, loss of potency, and the idea that one is never cured of cancer make the trip interesting, to say the nonsensical least.

    The way I see it now. With each six-month PSA reading holding relatively steady, I get six more months to live, unless an errant bus or something else unforeseen has my name on it.

  3. says

    Onward to 10, indeed! I’m a Stage IV survivor almost seven years in the making, and there are excellent reasons for you to believe in a long future — not just false optimism (“I know you’ll live another 20 years!”) But real reasons to think that life and quality of life will be extended. May the force be with you, B

  4. says

    And one of the reasons we all have hope is that in our old age we encountered a disease, but we also discovered a reluctant but accepting brotherhood. Guys who have nothing (left) to hide and no pretenses to maintain. Instead, honest, straightforward, straight-up (as in whiskey neat) brotherhood. I am grateful to each of you: Greg, Thomas, Bill. You have made my life better for knowing you.

    May we all live long and die many years from now of something entirely different than the cancer that unites us.

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