July 11, 2011 – A No-Brainer

On Friday I had a routine follow-up appointment with Dr. Lerner. It had already been rescheduled once, because of difficulties in getting my routine CT scan approved by my insurance company’s pre-screening agency, Care Allies, acting as an agent for the Presbyterian Church’s Board of Pensions. Well, the delay in approval turned into an outright denial. When I asked if I should postpone my appointment yet again, Dr. Lerner sent word through his office staff that he still wanted to meet with me, even without the scan results that were to have been the focus of our conversation.

When he came into the examining-room, Dr. Lerner explained that he had just called Care Allies on my behalf, and had spoken with the doctor who had denied his request for the scan. It appears that doctor was baffled by the fact that I would be having scans of my neck, chest, abdomen and groin after a thyroidectomy.

Dr. Lerner explained to his counterpart that the scans are not for my thyroid cancer, but for my lymphoma, which is an ongoing, chronic situation that needs to be carefully monitored.

“Oh,” the insurance company doctor harrumphed, “that wasn’t made clear to me.”

“Well, it was right there on the script I wrote, authorizing the scan, which was sent to you. What could be clearer than that? As far as I’m concerned, approval for this sort of scan ought to be a no-brainer.”

“Well, there are many factors that have to be considered in making this sort of decision...”

“The reason I say it’s a no-brainer is because if you don’t approve it, people could assume that you have no brains.”

I doubt the Care Allies doctor was amused. But he did issue the approval, and I expect to go for the CT scan in a week or so. That will be a couple of months late.

Good old Dr. Lerner. He tells it like it is.

I told him I felt bad that he had to spend so much time on the phone chasing down and disproving this frivolous denial of coverage.

He responded, with a sigh, that it’s just part of his job these days. He strongly suspects that insurance companies routinely disapprove a certain percentage of these requests, for whatever reason they can justify. They do this, knowing full well they’ll eventually grant approval, in most cases, on appeal. Along the way, he continued, some less persistent people may grow weary and give up. That’s what the insurance companies want. It’s not good for those patients’ health, but it saves them money.

I suppose, also, that these doctors on the insurance companies’ payroll have to fill a certain quota of denials, to justify their jobs. My case will probably be counted, somewhere on this doctor’s personnel evaluation, as one of a number of appeals he generated – which, in the eyes of the insurance company’s bookkeepers, shows he’s looking out for the company’s interests.

My insurance company is the Board of Pensions of the Presbyterian Church (U.S.A.) – a non-profit that’s nominally under the oversight of the denomination, but acts quasi-independently, for the benefit of plan members like me. The Board hires Highmark Blue Cross/Blue Shield to manage its medical-benefits program, and Care Allies – a contractor specializing in cost-control – comes in there somehow as the pre-screener of certain costly medical procedures. How involved Highmark is in recommending Care Allies to the Board, I couldn’t say.

I think well of the Board of Pensions. Based on the individuals I know who have served on the Board, I believe their highest priority truly is the welfare of plan members. Yet, when decision-making is outsourced to contractors like Highmark (ostensibly a non-profit, but with a big-business corporate culture) or Care Allies (a for-profit consulting firm), something of that charitable concern is undoubtedly lost.

What happened to me is no different than what happens to countless other people around the country every day. Add this incident to so many others like it, and the amount of wasted time, wasted effort, wasted expertise, wasted money is simply staggering.

Any healthcare system that involves a multitude of private insurance companies - and their contractors - competing for profits will continue to generate scenarios like this. I’m lucky to have a concerned, experienced doctor who’s willing to go to bat on my behalf against corporate greed. Not every patient does.

Universal, single-payer healthcare can’t come soon enough.

July 7, 2011 – Unbending Our Thoughts

Brian Stabler is a psychologist at the University of North Carolina, Chapel Hill, and a lymphoma survivor. In a helpful 2004 article, he speculates that a good deal of the trouble we go through in dealing with cancer is a result of unrealistic or “bent” thinking. The technical psychological term is “cognitive distortions.”

What are some of these bent thoughts? Stabler explains:

“For instance, when asked, many cancer patients report that they believe cancer is a foreign invader substance, such as a virus. This underlies the common misconception that you can actually ‘catch’ cancer from someone else. Obviously, this distorted belief could work against optimal outcomes, because it encourages the patient to rely on others – as if medicine, and a doctor or nurse is all that is needed to make things better. Not so: the patient is the most important part of the equation, and must learn to deal positively with cancer.”

Stabler encourages a technique of dealing with destructive thinking that requires immediately identifying the presenting thought that caused the negative emotional state, then “sweeping” it so it can do no more harm.

He suggests a learning exercise in which we keep a piece of paper close at hand, divided into three columns. The first is labeled “SITUATION,” the second, “REACTION” and the third, “THOUGHT.” When you find yourself reacting negatively, he explains, make a note of the situation that precipitated it, then try to capture the thought you were thinking just before you became aware of the depressive or anxious or angry emotion that ensued.

Stabler suggests several common categories of distorted thinking:

1. Black and white thinking – this is the all-or-nothing style where everything is simple and concrete, and there are no shades of grey.

2. Catastrophizing – where an individual interprets even the smallest problem as a potential disaster and reacts accordingly.

3. Fortune telling – the tendency to believe that we know what the future holds, and it generally is not pleasant.

4. Emotional reasoning – the belief that the feelings you experience represent reality, as in, "I feel bad all the time, so this must mean that things in my life are pretty bad."

If just one or two of these thinking styles is present, a cancer patient could have a poorer life quality, increased stress, and perhaps even negative changes in the course of [the] illness. Research has shown that if patients learn to journal their thoughts, and actively begin to challenge and adjust their ‘hot thoughts’ and distortions, they can anticipate improvements in their quality of life. I've come to firmly believe that keeping psychologically fit is every bit as important as keeping physically fit.”

Because cancer is generally not caused by some foreign-invader virus or bacterium, but is in fact an erroneous response of our own genes, our patterns of thought may well have a great deal of influence on how successfully we manage to live with this disease. We can’t think ourselves well by utilizing our minds alone, but our thought processes do have something significant to do with our well-being. It’s all part of the healing process. Every little bit helps.

July 1, 2011 - Biopsy Results and Follow-Up Plans

I’m writing this in Indianapolis. I’m here for a few days for the Presbyterian Church’s “Big Tent Conference,” a national training event.

In the rush to get packed and to the airport, I didn’t have time to report on my Wednesday afternoon follow-up consultation with Dr. Boyle, so I’m doing that now.

The news continues to be quite good. The doctor examined my surgery scar and says it’s healing well. The hardness of the tissue around the scar is normal, says he, and will diminish in time. He says I’ll probably always feel a certain tightness as I move my head up and down, or side-to-side, as do most patients who’ve had this surgery.

Dr. Boyle gave me a copy of the post-surgery biopsy report. It confirms the presence of cancer cells in both lobes of the thyroid, so total surgical removal was definitely the way to go. The report also identifies some cancer cells that were found in the fatty tissue that surrounds the thyroid, which isn’t all that unusual.

As for the pathology itself, my needle-biopsy diagnosis of papillary thyroid cancer was reaffirmed, with the further refinement that I have the “tall cell” variety of papillary cells. This is a somewhat more aggressive form of the papillary cancer.

Because of (1) the tall-cell diagnosis, (2) the concern about the cancer cells just outside the thyroid, (3) my age and (4) my male gender, Dr. Boyle is definitely recommending that I receive a single radioactive iodine treatment within the next 6 months. That treatment used to be nearly universally used as a follow-up for thyroidectomies, but now it’s thought that this procedure was over-prescribed in the past. Only certain patients now receive it, and those factors mentioned above make it essential in my case. Dr. Boyle says there’s no doubt about the advisability of going ahead with that, and who am I to disagree?

So, how concerned should I be about the tall-cell diagnosis? One paper I found online cites a study that found that the 5-year survival rate for tall-cell papillary thyroid cancer patients was 81.9%, as compared to 91.3% for ordinary papillary thyroid cancer patients. Those are still mighty good odds.

On Dr. Boyle’s recommendation, before leaving the Basking Ridge, New Jersey facility of MSKCC, I made an appointment to see Dr. Stephanie Fish, an MSKCC endocrinologist, on Friday, August 5. She’ll be the one who will oversee my radioactive iodine treatment.

As I understand it, that treatment involves some dietary restrictions before and after. As for the treatment itself, I’ll simply have to swallow a pill, which includes the radioactive substance that will make a beeline for any residual thyroid cells that may remain in my body, and zap ‘em. There are no side effects to speak of, although I’ll have to stay away from other people for a few days following the treatment, because of the radioactivity that will persist in my body.

Bottom line? There’s every reason to be confident that the combination of my total thyroidectomy with the radioactive iodine treatment that’s ahead of me will lead to a complete cure. The tall-cell variant is a concern, because it leads to a measurably higher risk, but the overall picture is still quite encouraging.