The Risks of Too Much Testing in CLL

As those of you know who follow my chronicles know, I have been plagued by a cracking irritating noise in my right ear associated with a congested feeling for months now.

While steroids gave powerful if temporary relief, nothing has solved the problem. It seems each doctor who checks the ear sees something different. The diagnosis ranged from a serious infection to a completely normal tympanic membrane with a few stops in between at a dull and retracted eardrum.

Here I valued my family doctor’s evaluation more than that of the less experienced “ear-looker-at-er”, my CLL guru, and in the end, relied on the the findings of a otolaryngologist.

When we doctors look in your ear, we are using one eye therefore there is no depth perception. That can lead to a misreading of what the anatomical landmarks are telling us and as a consequence, a misdiagnosis. Minor findings seen on the otoscope can be over-interpreted and lead to unneeded therapies.

When I saw my ENT specialist, he told my ear looked great. So I asked “ Then why the crackly noises and stuffy feeling? ” He wasn’t sure but he also wasn’t worried. Often in medicine, it is much easier to tell a patient what they don’t have than what the do. We can reassure our patients and ourselves that the chest pain is not angina from the heart, but darned if we know what is the true cause.

This brings me to revisit another old theme.

Patients come to the office for two very distinct problems.

The first is that they want relief from the symptom- the pain or itch or nausea or depression or a thousands other “chief complaints.” Chief complaints or CC- that’s what we healthcare providers call them in your medical chart.

The second very different motivator that leads to a doctor visit is the need to know that the presenting symptom is not something serious. “ Doc, I don’t want you to remove that mole. It is not causing me any problems. Just tell me that it isn’t cancer.” Or  “ Is it normal to feel my heart beat in bed at night?” Or “ Why am I hearing this funny noise in my ear?” And a thousand more concerns and worries that need to be assessed and offered reassurance more than relieved.

These are disinct problems, and the wise practioner must recognize what the patient is asking for and meet that need or the encounter will not be satisfying for either party.

I wanted the reassurance. The noise itself is trivial, but was I missing a clue to a more occult issue?

Because of my CLL, my specialist did a tympanogram and demonstrated that my drums bilaterally were responding to changes in pressure in a normal and symmetrical way. That suggested no serious pathology. The big surprise was my hearing test. It was nearly perfect, at all frequencies, in both ears. This was a welcome and unexpected finding in a baby boomer. When I think of my teenage years when I stood inches away from the giant stage speakers at a Led Zeppelin or Janis Joplin concert, and woke up with ringing ears the next morning, I am truly amazed that I suffered no permanent damage.

The ears-nose-and-throat man can see where my internal auditory canal (IOC) ends at the eardrum with his otoscope and where it begins my looking up the nostril with a different specialized instrument, but he can not asses what is in between.

That is why he ordered an MRI of my IOC. With contrast to enhance any tumor.

And here is where my tale of too much knowledge gets interesting.

A few days ago after physical therapy, and before a memorial service where I gave the eulogy (see post Jennie Lynn Taylor) followed by a CLL support group meeting, and ending with packing for travel the next morning, I squeezed in my imaging test. The radiologist reading my study is an old pal, so he shared the results with me. Another of the unabashed perks of being a staff doctor.

My IOC was patent (open) with no tumor or inflammation or fluid.

Great news.

BUT…

My right mastoid that should be fully aerated and thus appear black on the scan as did the left side instead instead had a mottled appearance reflecting fluid and swelling in the air cells. It wasn’t subtle. It was obvious.

Mastoiditis he said! A dreaded infection, usually of children, that can lead to major surgery, nerve damage, hearing loss, and life threatening abscesses and brain infections. I have not seen a case since I worked on the ENT floor of St. Justine pour Les Enfants in Montreal as a med student at McGill.

Could my suppressed immune system allowed some weird organism to slip into my bone and take up a hostile and damaging occupation?  

This demanded action. Or did it?

Read my last post on worrying to see how I was coping.

You see it just didn’t add up. My ear was pain free and functionally normal. I wasn’t sick and hadn’t been sick recently. There was no tenderness or redness or warmth or fever.

I called to consult the doctor who had ordered the scan and they arranged an appointment later that same day on my way home from the memorial service.

He took one look at the MRI and reassured me (exactly what I needed) that is a non-event that he sees all the time. Sure the mastoid air cells are different on the right, but this could represent old minor damage from childhood infections or allergies or nothing.  Not a chance that it is some weird bug because there is no involvement of my ear canal and no free fluid. Why the right side only? Why has become symptomatic now? He has no idea, but he also has no worries, so I won’t either. 

Apparently MRIs are notorious for over diagnosing mastoiditis. Who knew? My ENT colleague gets too many calls from the ER or worried neurologists or family doctors about exactly this same non-issue.

So here’s my point, as I try to decide about whether to go ahead with my CT scans next week. Will they find another red herring on all those scans that will demand further workup to “rule-out” that it is nothing to worry about. Well I wouldn’t ever have worried if you hadn’t done the imaging to begin with. Much ado about nothing.

You order enough labs, x-rays, and other tests and sooner or later you are bound to find something, but does it mean something. As my pseudo-mastoiditis case revealed, often it doesn’t.

This is another cost of knowing too much, and too little at the same time.

Moreover as to my upcoming CTs, the size of my internal lymph nodes measured by the scan will make absolutely no difference in my own care. My suspicion is that it will also make little in any difference in the final study data as long as I get the exit CT scans and bone marrow biopsy in a brief three months from now. Others might disagree. The scan might find an unexpected non CLL growth or problem. While the yield on secondary cancers is small, it can be life saving for those few. I can count a half a dozen friends among those who are alive today with exactly this scenario.

My tendency is not to look for trouble. I am no diagnostic nihilist, but how many CTs do I need?  This recent brief scare with my MRI  “finding” is another reason to think twice about this testing.

Tests need to be reasonably expected to make an impact on how the patient or the disease will be managed. There is no role for curiosity, especially when we are talking about procedures that care some  small long term risk (see prior post on CT scans and secondary cancer).

In the big picture, the fact that I can focus in on such passing details such as the risk/ benefit of imaging is testimony to the fact that I am doing so well on the ibrutinib.

Labs are rock stable and energy is picking.

Life is good. Off  to Ohio in a few days to pick up more magic grey pills.