Post-Biopsy Reflections: Patients Can’t Be Passive

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In April I had a thyroid biopsy, and as you’ll see if you go back and browse that entry, the results of the biopsy came back suboptimal. That simply means that the pathology lab was unable to determine whether or not the cells in the samples were cancerous. It was inconclusive.

However, if you read the end of that earlier blog post about this (what seems to be becoming a) thyroid biopsy saga, you’ll see that the inconclusive/suboptimal diagnosis isn’t necessarily a bad thing. Except…

Except that in early October, my endocrinologist (or rather, an endocrinologist who was subbing for my endocrinologist) recommended another thyroid biopsy.

And another biopsy isn’t pleasant, and that’s a bad thing. Another biopsy means another hour with my neck tilted back somewhat — mostly — uncomfortably. It means another series of injections of local anesthetic and four or five or six more “passes” to try for good samples from the nodule. “Passes,” by the way, refers to the insertion of a series of two-inch long needles into my neck until they reach the thyroid. This, if you’ve yet to have the pleasure of experiencing it, is a very strange sensation, especially while under anesthetic. Not much pain, really. But odd. The quickest and best way I’ve found to describe it is almost like you’re choking, yet you can breathe.

Yesterday was that second biopsy.

While the chances are very slim that the results will come back — after Thanksgiving, most likely — positive for cancerous cells, I’m a bit disheartened with how the biopsy went.

You may know that I’m rather picky about bedside manner. I have an endocrinologist who is one of the founders of the Family Centered Experience at the University of Michigan Medical School and who has a phenomenal bedside manner. I also have a wonderful primary-care physician. The truth is, I’d say that more than 90% of the time I’m more than satisfied with the level of care I receive within the University of Michigan Health System.

Yesterday, however, I wasn’t pleased with the experience. As far as biopsies go — my biopsies — I would rate my first biopsy last April a 9 out of 10. My second? A 3, at best. (And do please understand I’m talking about my experience as a patient and the bedside manner, not the doc’s competence in performing the procedure. From my layperson’s perspective, the actual biopsy went just fine.)

I first sensed something was amiss when the doctor performing the procedure (a doctor in the same clinic that my endocrinologist works in) asked me if I’d ever had a biopsy before. Umm, excuse me? It would please me if you’d look at my chart. (I didn’t say this, of course.) From there it went downhill.

In all fairness to the doctor, she was tasked to perform a biopsy; she wasn’t assigned to be my primary-biopsy physician, to be with me every step of the way as I go through my many health-care-system visits for my chronic illness and the other sundry doctor things I find I’m having to endure. So, I’ll let her transgression of not knowing about my previous biopsy slide. I guess. Even though… even though I feel a patient’s chart should be consulted prior to talking to the patient.

The next thing that I didn’t enjoy was being able to overhear the doctor talking to the nurse as if I wasn’t there. Remember, I was lying on my back, my neck craned up to the bright light, with either an ultrasound wand on my throat or a needle in my neck (or both) for most of the time, unable to talk or swallow for several minutes at a time.

So when I hear the doctor discuss the amount of fluid they’ve removed from a cyst on my thyroid (yes, a cyst and a nodule — at least that’s what I think was going on, because I think that they had to decrease the cyst size to get a biopsy sample of the nodule), and to then hear the doctor ask the nurse about some other patient, “How much fluid was in that one woman’s cyst?” and to hear the answer (45 ml), without having heard how much fluid was in mine, and being unable to talk, to ask questions, to then hear the doctor say, “And what did they do for her? They performed a thyroidectomy, right?” and for this health-care duo to seem completely oblivious to the fact that I was there, I was there, in the room, lying five feet from them and comparing my situation to the smatterings of what I was overhearing (and thinking why in the hell am I being subjected to this)…

Well, can you tell? I was uncomfortable. I don’t know what a thyroidectomy entails. Or at least I didn’t then. I’m sure my blood pressure went up. I know that I became a bit (slightly, very slightly) panicked about what else might be going on besides them just extracting cells to look for conclusive noncancer results. This cyst? I didn’t think I had to worry about it. No one told me to worry about it. And now I’m gleaning things from this conversation next to my bed that doesn’t involve me?

Oh, doctor, but your conversations had within my earshot do involve me.

When I asked her later what the story was with the cyst, she kind of told me, but also seemed to indicate that my doctor would have more information for me when the results came back. All well and good if the seeds of fear hadn’t been planted by the inappropriate conversation.

So I left the office rather disheartened. If the cyst continues to fill up with fluid after draining, I gather they can continue to remove fluid in the way I just had fluid removed. But that’s not pleasant (see above). They can also perform a thyroidectomy. But, but… isn’t my thyroid necessary? Well, she said they could take out half. Yes, but what about the effects? Oh, those. Let’s just say to Eric, nonchalantly, that if there are problems that there is hormone-replacement therapy.

Wait. So, yeah. Wait and see. I guess.

I’m going to wait. For the results. And better information. I wasn’t really in the right frame of mind to ask detailed questions or to remember the answers during yesterday’s procedure. My wife — my notetaker and grand-doctor-inquisitor extraordinaire — was not present, something I quickly realized was a mistake (she’d asked if I wanted her along, and I said nah, I got this. I didn’t got it!).

When we find out the results, when I next go in to talk to my endocrinologist or whomever about the results, she’s going with. We have some details we’d like cleared up.

My advice to you is to please get as much information as possible when going to the doctor for any procedure. If possible, have someone with you who’s prepared to take notes, to ask questions on your behalf if you drop the ball, and to help you remember what it was you spoke with the doctor about.

It’s hard work being a patient.

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