Tag Archives: recurrence

Of Beginnings, Odds & Ends

Beginnings

Mom

             Mom

Autumn, 1942. Mother is in the hospital for a hysterectomy after years of (what were then called) “female problems.” She awakens after her planned surgery, tactilely examines her abdomen but finds no bandages, no stitches — nothing binding her back together. At the last moment, there had been no surgery, no hysterectomy. She inquires, and they tell her: “You’re pregnant.”

With me.

Odds & Ends

In the popular lexicon of cancer, a doctor declares: “You have cancer.” It is, however, a threadbare cliché, as though every doctor follows this same script, says these same words, and that every cancerian’s life is immediately upended.

I’ve come to understand that, in reality, I was diagnosed twice with prostate cancer — and the first time was the easy one.

It came on March 26, 2007, when the urologist reported the findings from my biopsy: “There’s a little bit of cancer,” he said over the phone. And given everything we could know from that biopsy, surgery would bear an almost-90 percent chance of a cure (no recurrence). It all sounded rather cheery — optimistic odds worthy of my hope. I would have surgery and move forward, and my cancer would be nothing more than a receding episode in the rear-view mirror of my life.

Except for the ‘second’ diagnosis.

Sep 19, 2007. My first follow-up after surgery: the pulling of the catheter, the test for bladder control, a consult with the surgeon and the delivery of the findings from pathology.

“I never expected this,” my surgeon said, with a shake of his head, as he delivered pathology’s findings: cancer in two of my lymph nodes. Not a trace of cancer anywhere else, just in my prostate gland and in two neighboring lymph nodes. I was now Stage 4, advanced prostate cancer, given the lymph node involvement.

What were the odds, I asked, that the tissue samples analyzed by pathology contained all of the cancer that had metastasized from my prostate? “Less than 10 per cent that we got it all,” he said, “a 90 per cent chance there’s still some cancer somewhere.”

Funny how you can go in with a 90 percent chance of a cure and come out with a 90 per cent chance of none.

In a reassuring voice, though, he told me that one of his patients — just like me – was still alive after eight years. I was only 64 at the time, and that hardly seemed like a stretch goal.

Eight years?

“Seven years,” my oncologist said a month later. Seven and a half years, to be exact, was the median survival time in a 1990s study of men with lymph node involvement who, after surgery, underwent hormone therapy, as I was about to. (Qualifiers: It was quite a small study, and there are far more and far better treatments available today.)

But still… The clock seemed to be ticking backwards on me.

Seven and a half years?

That was seven and a half years ago this week.

Neither eight nor seven nor any other number of years has ever been a prognosis for me. They were neither forecasts nor predictions, just numbers, and certainly nothing that’s ever prompted me to get my affairs in order. I’ve never chosen to indulge these time spans – or even discuss them — because I’ve never really found them actionable: There’s nothing I’d do differently. You just do everything you can and take it a day at a time. And live your life.

And my life today – at least the cancer part of it – inches along. At my six-month check-up in January, my PSA – a marker of how well I’m doing – was minuscule (0.06 ng/mL) and rising slowly (up 0.02 since July 2014’s reading). Heck, the first time I had recurrence of cancer, my PSA was rising 0.03 every three months!

No, I’ve not beaten any odds in this, the eighth year of my being a Stage 4 cancerian. But I do remind myself that whatever my actual number of years might prove to be, my life’s all been “free” — every moment of it lived on free, not even borrowed, time since that day in the fall of 1942.

Living with Cancer

Seven years, three months and 24 days into my cancer journey, I’ve arrived at a new way station on this indeterminate itinerary: Living with Cancer.

Oh, I’ve known since pathology reported after surgery (“carcinoma in two lymph nodes”) that cancer would inevitably be a permanent part of my life, that an outright cure was of such low probability that a lottery ticket seemed the surer bet.

But there’s always been a binary quality to my cancer, an either/or state with no middling. I was either no evidence of disease (NED), or, in the event of evidence, my oncologist and I would be gearing up, discussing and planning the next treatment. I once even described my cancer status as “between treatments.”

Not so now.

My semi-annual, July 9 PSA test came back at 0.04 ng/mL, up from 0.03 in January. And the medical plan now is to continue to just monitor this trace amount, to watch it, and to check it again in six months, come January. With a slowly rising wisp of PSA and no treatment planned — none even up for discussion – “between treatments” seems out-of-date and “living with cancer” the more apt description.

To put these nano-numbers in perspective, think of them as the coinage of cancer. I’m now up from 3¢ to 4¢. The actual (and dreaded) recurrence of prostate cancer after surgery is not even medically official until 20¢. And in clinical trials for new prostate cancer drugs, getting a prostate cancer patient below $2.00 is an achievement.

I am, in fact, where a lot of men are dying to be, and dying they are.

I concede that I’ve had to do some heavy mental lifting to wrap my head around this slow rise in PSA and to accept the fact that we’re only going to monitor it, to see how high it goes, and how fast. Later – hopefully, much later – we’ll identify and implement the next therapy, if one becomes warranted.

Heck, I may now even be in a sweet spot of cancer management: a chronic but not (for now) life-threatening disease, one that I can just live with. OK, I can hope.

When I shared my July test results with my cancer-blogger friend Danean, she spoke Truth when she said: “I’ve learned that in this whole cancer odyssey, sometimes the only thing we get to choose is how we react to things.”

And this is how I’ve chosen to react: I embrace this new phase, uncomfortably passive though it feels at times. I’m lucky to be where I am, and my test results could have been worse. And I still do all I can with diet, exercise and supplements to push back against my cancer, to keep my PSA numbers to a tad and make my cancer but a mere chronic illness.

The bottom line is that, for now, I’m neither in remission nor imminently imperiled.

I’m living with cancer, and life is good.

It seems an appropriate time to inaugurate a new t-shirt.

It seems an appropriate time to inaugurate a new t-shirt.

No News Is…No News

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Life is good: Curry Reunion, Memorial Day Weekend, 2014, Cincinnati: Seven (of many more) first-cousins, yukking it up. Our family matriarch, Aunt Betty, is in red.

In the written record here over the past three years, you can find a pattern to my regular cancer check-ups: January, April, July, October. Then repeat the next year. JAJO. So you might ask, where’s the report on my April 2014 check-up and PSA test? Is something wrong? Am I OK? Or as I was asked several times at a Curry family reunion over Memorial Day weekend, “How are you doing?”

In a sentence, my oncologist gave me a bye on an April check-up.

I had, in fact, “graduated” to semi-annual, as opposed to quarterly, check-ups, after two years of being no-evidence-of-disease. And then a smidgen of PSA was detected in my January blood test; but at 0.03 ng/mL, that level wasn’t sufficient to warrant regressing to quarterlies, wasn’t enough to shout “biochemical recurrence!” In fact, “we don’t make anything of such subtle differences in a test that is not perfect,” my oncologist said in response to my alarm at January’s (barely) detectable PSA results. (Remember, the presence of PSA and its amount tell me how well I’m doing in my cancer journey. In four words, more is not merrier.)

And (my reasoning here, not my oncologist’s), an April test, whatever its outcome, most likely wasn’t going to provoke any change in treatment or its timing. Waiting until July will give us much greater clarity into what’s going on with my cancer, whether it’s actually recurred, and, therefore, what — if anything — we need to do next.

I’ve walked the road of recurrence before, for a year starting in July 2010, and every cancerian knows the marrow-deep fear of recurrence: One more therapy has been exhausted, is no longer an option, and still the embers of cancer continue to smolder on. For me, I’ve now had surgery and radiation, and they are treatments available to me no more. Thus, if January’s test results do indicate recurrence, I’ll move on down the line for the next in what is a finite number of treatments.

So in April, I escaped the anxiety that accompanies any impending cancer test and the wait for its results — only to know instead the worry of waiting, the prolonged posing of a nagging curiosity:

“Is my cancer back?”

Fried Chicken and Champagne

Tuesday was my quarterly cancer check-up, and we had decided some weeks prior to celebrate the occasion with fried chicken and champagne, a special gift bottle from Sue, a lovely lady and friend at the gym. Fried chicken has become a rare and special meal for me, given the low regard that fried foods must hold in my nutritional pyramid. And champagne because – well, it’s still thee beverage for a Special Occasion.

We made this decision to cheer my Jan 7 check-up – regardless of its outcome — because:

  • Test results indicating ‘no evidence of disease’ (NED) would warrant a celebration of two years with no evidence of disease.
  • Test results reporting a recurrence of cancer would still prompt an appreciation for the 21 months that I was cancer-free.

Either way, NED or no, Sue’s champagne and the Colonel’s chicken would speak to us on a milestone day. Odd, yes, but not all of life’s choices are even.

So that’s what we did, we savored our fried chicken and hoisted our glasses of champagne. But what, exactly, did we celebrate?

As I’ve written, PSA test results tell me how I’m doing in my contest with cancer, and PSA levels of less than 0.03 are considered ‘undetectable’ – no evidence of disease. Higher than 0.03 is a pisser, as I experienced with my first recurrence of cancer from mid-2010 to mid-2011. So what to make of test results that come back at exactly 0.03?

For that’s what the number was last Tuesday: 0.03. Call it barely detectable or call it essentially undetectable.

Either way, I confess to having the mean reds over this outcome. I had hoped – Oh, how I had hoped! – to be no evidence of disease: to be two years’ NED as I approach the seventh anniversary of my diagnosis, that would have been huge to me. Still, I can’t call it ‘bad’ news, because it certainly could have been (much) worse. ‘Borderline’ thus seems to me to be the appropriate label, the descriptor that, for now, best applies. Not really good, not really bad; neither here nor there but on the border between. So we’ll check me again in July to see what’s more, and then we’ll proceed as necessary.

“Thrilled to hear u are still celebrating,” daughter Stephanie texted in response to my PSA news. “Enjoy life!”

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