Waiting to Treat the Cancer

This post was originally published on this site


My patient had first come to us two years earlier from another hospital, where he had been admitted with back pain so severe it prevented him from walking.

CT scans revealed a mass near his spinal cord, a biopsy of which showed lymphoblastic leukemia — essentially a “solid” form of the cancer we normally find in the bone marrow. It is a particularly aggressive tumor, and we knew we’d need to complete his evaluation and start chemotherapy immediately if we had any chance of eliminating it.

It was summer, and when I walked into his hospital room to greet him for the first time, he was wearing a Cleveland Indians jersey and hat. His dad sat by his bedside. My patient had some mild cognitive deficits and cerebral palsy, and at the age of 30 still lived with his parents, though he was able to hold down some part time janitorial jobs to make some spending money. His dad rose quickly to shake my hand.

“We want to get started quickly and treat this thing, doc,” he said to me. He put on a brave face for his son, belied only by the uncertainty in his eyes. I would have done the same for my boys.

“I’ll do whatever you tell me to,” my patient said earnestly.

“All right then, let’s talk about what you have and how we can treat it,” I said with just a whiff of swagger, which at that moment I thought maybe they needed.

Within 24 hours we performed a bone marrow biopsy, which showed a low level of the leukemia, and a lumbar puncture, which confirmed that the leukemia had not yet reached his spinal fluid. We inserted a port and started the chemotherapy.

He weathered the expected fevers and requisite blood transfusions, went into a remission, and was discharged to my outpatient clinic a month later.

Over the next two years, I saw him regularly as he continued his treatments. This is where leukemia specialists can be particularly merciless. The key to curing lymphoblastic leukemia is to treat it according to the advice often attributed to Chicago’s Mayor Richard J. Daley on how his constituents should vote: “Early and often.” Just as my patient was starting to feel better from one round of chemotherapy and his blood counts had barely recovered, I treated him with another round, holidays and vacations be damned.

He took it all with good spirits. In the fall he wore Browns gear, and when I gently suggested to him that he might tolerate his chemotherapy better if he donned the black and gold of the Pittsburgh Steelers, he wore even more of it. In the winter he turned to a Cavaliers jersey, and then back to the Indians come springtime. It became part of our ritual to banter about the recent plights of the Cleveland teams, and I checked the standings before walking into his room, as if cramming for a test. It also relaxed his dad. He must be doing well, if we had the luxury of bemoaning the hapless Browns. And he was.

Then one day I walked into the examination room to see my patient and was struck by a cloud of fear that seemed to hang in the room oppressively, consuming the oxygen within it. His dad sprung from his chair to shake my hand, while my patient, wearing a plain white T-shirt with his sunglasses propped atop his head, glanced at me nervously and rubbed his knees rhythmically. I didn’t beat around the bush.

“What happened?” I asked.

His dad silently gestured to his son.

“My testicles hurt, and they’re swollen,” my patient said, glancing back and forth from me to his dad, as if looking for one of us to reassure him that he would be O.K.

“Let’s take a look then, it could be a lot of things,” I said, but this time without any swagger. I was worried, too.

The testes are referred to as a “sanctuary site” within the body, with a natural barrier that prevents free communication with the rest of our blood supply. The brain has a similar barrier. Thinking about this anatomy from the perspective of furthering the survival of humans as a species, it makes good sense: We wouldn’t want infections or drugs in our bloodstream damaging sperm, which could lead to birth defects or infertility.

It’s not a perfect system, though: some infections and drugs do slip through, as can leukemia. Because the barrier blocks much of the chemotherapy we used to treat it, if the leukemia does break through, it can grow unchecked.

My patient pulled down his pants and underwear to reveal a scrotum 10 times its normal size, with testes the size of softballs. They were rock hard. I couldn’t imagine any diagnosis other than cancer. He was watching me closely, assessing my reaction.

“I think the leukemia is back. I’m so sorry,” I told him. “But let’s make sure. We’ll also need to determine that the cancer hasn’t returned anywhere else.”

“I’ll do whatever it takes,” he told me.

“We’d like to get it treated quickly,” his dad said, both of them echoing the instructions they gave me when we first met.

Within days he had an orchiectomy — the surgical removal of the testicles — which confirmed that the leukemia had recurred, in his testes. He also underwent another bone marrow biopsy and lumbar puncture, neither of which showed any detectable traces of the leukemia anywhere else — though we knew it was only a matter of time before it would return elsewhere.

His only chance to be cured now was a bone marrow transplant.

The silver lining to his misfortune was that, because the leukemia was confined to his testes and had been removed surgically, he would not need more chemotherapy before the transplant. Members of our transplant team contacted his insurance company to obtain approval for the appointments and tests he would need for the transplant to occur. All in, the transplant and its necessary follow-up would cost around half a million dollars. Time was of the essence – he could receive the transplant only if he remained in a remission.

Another week passed.

And another week. The wait was maddening. We phoned his insurance company again, but they put us off, saying that his “case” was being reviewed.

It wouldn’t be long before the leukemia cropped up again.

I saw my patient and his dad for an office visit. Luckily, his blood counts had remained steady, meaning the leukemia did not seem to have returned to his bone marrow. His dad asked if there was anything he could do to move the approval process along.

“Keep calling your insurance company. We will too. Maybe our combined efforts will light a fire under them.”

Another week passed. No decision from insurance. It would be a race between the leukemia returning and the insurance company approving the procedure that could, potentially, keep it at bay permanently.

Desperate to do whatever I could to increase my patient’s chances, I decided to give him another round of chemotherapy, hoping that it would thwart any return of his cancer.

Finally, we heard back from his insurance company that the transplant was approved. All told, it would occur three months from the time his leukemia had returned.

I saw my patient one final time before his transplant. He looked good and was smiling again. With the Indians’ loss to the Yankees in the playoffs, he had transitioned his wardrobe back to the Browns. Psychologically, he seemed ready for the next step in the leukemia therapy. He was admitted to the hospital shortly afterward, and so far is doing well.

But I wondered whether the delays in his treatment hadn’t worsened his chance of being cured. I understand that, particularly in this age of breathtakingly expensive cancer treatment, there is a need for checks and balances on our treatment recommendations and their potential benefit. That public health perspective seemed awfully shortsighted, though, when I had to face my patient and his dad each week as his leukemia threatened to come raging back.