Thursday, May 21, 2015

My Meeting with Dr. K

Well, I finally met with my new oncologist, Dr. K. It went fine.

As I have written, it took a while to get to this point of finding a new oncologist, scheduling an appointment, re-scheduling an appointment, and then getting there.

The office staff was very professional and friendly. There was a little banter with the nurse, which was nice. There's something about oncology nurses -- they aren't just nice, they're also wise-guys. (I'm aware that some people reading aren't native English speakers, and I wrote "wise asses" at first, but Google Translate wasn't really giving me what I wanted. I think "wise guys" will work, though.)

At Dr. R's office, I always went in first to get blood work done, and then went into an exam room, and had the nurse call my wife in. At this new office, we didn't do blood work, so when I went into the exam room, I asked the nurse if she'd bring my wife in from the waiting room. The nurse told me I'd be in trouble with my wife for that, but I said I'd already built up points for wearing new socks and not embarrassing my wife by having the nurse see socks with holes in them. When my wife came, the nurse told her I'd have to get an extra dessert tonight for being a good boy and wearing decent socks. (Apparently, her husband also prefers his old, holes-filled, wife-embarrassing socks, too.)

Dr. K came in soon after, and we went through my medical history. Lots of questions about diseases I have had, whether anyone in my family had cancer, medications I am on, etc. (I'm sure you've all been through the same drill.)

As part of the history, he asked if I drank alcohol. I told him, honestly, that I have one drink maybe every couple of weeks. "A beer or glass of wine?" he asked. "At my age, it's a wee dram of scotch," I said.  He told me I was not "of an age" yet, but that when I hit 50, I should look out for my American Association of Retired Persons (AARP) card, which will come when I am 50, and which I can show to get a lot of discounts. One of those discounts is a free donut at Dunkin' Donuts,

So I have a nurse who thinks I deserve an extra dessert, and a doctor who wants to make sure I get free donuts. And here I was worried they'd say something about my weight.

He then started to tell me a little bit about the notes he had received.

"You have a variety of Lymphoma called Follicular Lymphoma. And when you first saw Dr. R, and there was a biopsy, it apparently came out that you have grade 1. I don't know if you knew that or not."

OK, this is where things might get a little problematic.

I told him that I was aware that I had grade 1 Follicular Lymphoma. And I let him talk some more.

He asked me what I thought it meant that I had Follicular Lymphoma. Did I know what Follicular Lymphoma was?

I was a little shocked. Because, um, yeah, I have a pretty good idea of what FL is. I said "A blood cancer."

Yes, it is, he said. And then he gave me a short lecture on white blood cells, leukemia, lymphoma, and what all of that means. Fairly basic stuff.

Which I appreciated. He did mention that some of his patients just don't want to know anything about their disease. They want to be told what to do next, and leave it all up to the doctor.

Obviously, I'm not one of those patients. I tried to gently let him know that. I mentioned that I do like to know what's going on with my disease, and that I read medical journals. I am, I said, a Cancer Nerd.

"No, no, you're not a nerd," he said, consoling me, as if I thought this was a bad thing.

"Oh, yes I am," I said, trying to make clear that I wore that label proudly.

Things kind of went this same way for a while: he had kind of a prepared speech about follicular lymphoma, I tried to indicate that this basic information was nice, but I the kind of patient who read  a lot, and him sort of not really picking up on those clues.

I could have been a little less subtle, but I also know that this was our first meeting, and we were both kind of establishing who we are. He's not Dr. R, and I know that, and he and I don't now, and probably won't ever have the kind of relationship that I had with Dr. R. And that's fine.

He made it clear that his decisions are guided by NCCN Guidelines -- how often to scan, which treatment to use, etc. After our appointment, he had planned to write up some notes and look at the guidelines, and get back to me with some suggestion for when I might be scanned again.

(I looked up the NCCN guidelines when I got out to the car. But I'll wait for the phone call anyway.)

On the positive side, he did say that while he uses the guidelines (because they are based on research), he also listens to patients, and if a patients seems to need a CAT scan, even if goes against the guidelines, and it's not the rational decision, he will go along with it. It's nice that he does that, but the way he said it, making the patient's emotional need seem irrational, kind of bothered me a little. I told him I was part of a support group, and it seemed to me that most of us see this disease as at least as much an emotional issue as it is a physical issue. He didn't really have much to say about that.

Also, he didn't do any blood work. He says it's not a very reliable indicator of a problem, and he does it every six months (I'm at about 5 months). My numbers were great, so there's no need to do it so soon.

So, overall, I think the appointment went fine. I didn't have any kind of instant connection with him, but I think I know where he's coming from and what his approach will be. And I can work with it. For now. If and when things get problematic, we will see just how much he is willing to listen to what I have to say.

I do miss Dr. R, but that ship has sailed, and it's nice to know that I am officially under someone's care now.


Virginia Miller said...

Glad to hear you are under a doctor's care again, Bob. However, your post raised several questions for me. Did your previous doctor, Dr. R., know about your blog...and if so, did his notes not contain that information? I would think your new Dr. K. would know your level of expertise on FL. Also, I may have misunderstood prior posts, but is your FL stage 1 or grade 1? Finally, did Dr. K. explain why he doesn't think blood test results are reliable? Thanks for continuing to keep us informed with your posts!!

Lymphomaniac said...

Hi Virginia. Dr. R did know about my blog, but I think he was too busy to read it. He and I did talk about research, so he knew what level I was informed. With Dr. K, I'm not so sure I want him to know just yet, partly because I don't want him to see me complaining about his office. But I also don't want to come in to this relationship making it seem like I think I know more than him. He's the one with the medical degree, not me. I'll just let my level of knowledge show itself naturally. And if I decide that it's important to have an oncologist that can talk to me about those things, I'll go to Dr. C at the research hospital. As for my own Lymphoma, I am grade 1, with some grade 2, and stage 3. Sorry -- I wrote that wrong! I'll be sure to fix that. And as for the blood test results, he didn't get too much into it, but he kind of implied that the numbers wouldn't change rapidly enough to signal something that other symptoms wouldn't also point out. Like, I may get night sweats and new nodes popping up everywhere before a blood test showed it.
And thanks again for reading.

Virginia Miller said...

Thanks for your response, Bob. I can understand your reasoning--it makes total sense. I have tried to keep up with the literature in talking to my doctor since I want her to think of me as a "with-it" patient. She's been great about sharing what she is learning about FL.

Lymphomaniac said...

That's great, Virginia. I had the same kind of relationship with Dr. R, and I fear I won't have it with Dr. K. Dr. R did a fellowship in Hematology, so he got all the blood cancer patients. It seems like Dr. K is more of a generalist, and he goes "by the book" -- literally, using the NCCN Guidelines to make decisions. That's fine, and I agree with the approach, but I don't see him getting excited about Ibrutinib, or something like that. We'll see how it all progresses as time goes on.