Tuesday, August 16, 2016

Oncologist Appointment

I had an oncologist appointment today.

The good news: Everything looks great.

The not-so-good news: I think I'm going to look for a new oncologist.

First, my health. Everything looks great. My blood work was "100% perfect," according to Dr. K. His physical exam didn't show any problems, either. And I feel fine. So, in my usual three-part exam, I was 3 for 3. All good.

Now, as for my wanting a new oncologist......

I've been seeing Dr. K for a little over a year now, and if you've read that far back, you know I haven't been all that crazy about him from the start. I am aware that he had a tough act to follow. Dr. R was my first oncologist, and I think we get attached to our doctors when they have guided us through rough times (like a cancer diagnosis and treatment). But Dr. R was also (1) young, which I think made him more sensitive to patient needs, (2) a hematology specialist, which made it easier to have conversations about Follicular Lymphoma and its treatments, and (3) just a nice guy -- we'd spend the first 10 minutes of the appointment talking about my kids, his kids, baseball, whatever. He put me at ease, and oncology appointments were almost (almost) something to look forward to.

Dr. K really isn't any of those things. He's close to retirement, which isn't a bad thing in and of itself, though it had Dr. R a little worried about recommending him, thinking he may retire soon and I'd need to switch doctors sooner than I'd hoped to (which is kind of ironic). The website for the practice lists hematology as one of his specialties, but his approach seems to be to look up NCCN Guidelines for how to treat Follicular Lymphoma, and then just do what they say. Again, not necessarily a bad thing, but if the reason for everything you do it "because the book says so," it doesn't leave any room for discussion. And he does seem to be a nice guy, but I always feel like he has no idea who I am, and doesn't care to know. It's not that he is unkind or inhumane, but it's like he didn't even bother to look at (or take) any notes before he comes into the room. But when your plan is to follow what the book says, those little differences between patients don't really matter, right?

So for today's appointment, he came into the room, rubbing antibacterial foam into his hands (he doesn't shake hands or anything like that), and told me that my blood work was "100% perfect." He then went down the list of everything that gets looked at in a Complete Blood Panel, using the most general terms he could, like "clotting cells" instead of "platelets." And then he said, "So everything looks great, but I'm going to throw in a twist." I waited. "I want you to get a CT scan," he said.

I told him that I thought I had gotten one a year ago. Turns out it was 2 years ago, in June 2014. Fine. "Do I need a CT scan?" I asked.

"Well, I think it would be a good idea to take a look inside. Just to get another baseline. I don't think we'll find anything, maybe a few slightly swollen nodes. But I think it would be a good idea to see what's going on."

He then asked me to take off my shirt and he did the physical exam, feeling my nodes and checking my eyes and lungs and throat, all the while repeating three or four more times that he thought a CT scan would be a good idea.

He was aware that unnecessary radiation could be a problem. But he still thought a CT was a good idea.

At this point, he asked me how my summer was going. I started to tell a story about my son. He interrupted and told me his own story about being in medical school. Then he said, "OK. Everything looks great. I'll let you get out of here and do what you need to do today." And he was gone.

I made my way to the exit, stopping at the desk to make another appointment for 6 months. I think I was supposed to make a scan appointment then, but I didn't. By the time I got to my car, I had decided that it was time to look for a new oncologist.

At this point in my life as a cancer patient, I know what I want and need from a doctor. And I'm not going to bother with one if I'm not getting what I need.

I need someone who treats me like an individual. I don't expect someone to remember the details of my life 6 months after I tell them to him. But I do expect him to listen when I am telling them. I remember my first appointment with him. He seemed to have a prepared speech for patients with Follicular Lymphoma, giving some very basic information.Which might have been fine if I had just been diagnosed. But I already had 7 years as a patient. And when I tried to explain that I do a lot of research, he was dismissive. I called myself a "cancer nerd," and he said, "No no not, you're not a nerd," and then kind of gave me a little pep talk about self-esteem, completely ignoring what I had to say about the level of conversation I was willing to engage in.

It's been the same pattern in all of my visits -- he has a prepared speech, he doesn't seem interested in any kind of discussion, he interrupts and doesn't listen, and there's really no room for anything other that what the Guidelines say.

And I thought all of that would be fine. I thought as long as I'm healthy, all I really need is someone to order order blood work and feel my nodes every 4 to 6 months. If and when I need treatment, I can go to a specialist for a second opinion, and have him or her deal with the heavy stuff.

But I just can't do it any more.

I've already started looking. In some ways, another general oncologist would be good, someone who knows how to talk to patients and treat them like people. In other ways, a lymphoma specialist would be good, someone who can say "There's been some interesting research on a new Immunotherapy treatment" when I ask what's new.

I'd be happy with either. I used to have both. Now I have neither.

I don't know who I will see for my next oncology appointment, but I'm pretty sure it won't be Dr. K. And I'm pretty sure I won't be getting an unnecessary CT scan, either.

I'm not happy about it all.

I'll keep you updated.


Jackie said...

Hey Bob,
I see a Lymphoma Specialist, she is also the same Dr. who diagnosed me and administered my chemo treatments. I adore her and actually look forward to seeing her every 4 to 5 months. She took me off annual CT Scans about 2 years ago. It is important for you to be able to trust your doctor and to form a relationship with him/her. I sincerely hope you will be successful in finding someone who fits the bill.
It will be 10 years for me next March. I owe that to my beloved doctor and the Good Lord (not necessarily in that order!).
Good luck in your search,

Anonymous said...

Think yourself lucky you do not live in the UK
Have been on watch and worry for 6 years

Was told 2 years ago if I asked for treatment I could have it
Asked this week for treatment and was told my blood work was fine and treatment was not necessary.
Don’t worry HE SAID you will get B symptoms if I need treatment.
Pointed out I already had symptoms.
Asked about maybe another CT Scan. (ONE IN 6 YEARS)
He said not necessary.
Now looking at paying for treatment.

Lymphomaniac said...

Yes, I know. After I write a post where I complain about my oncologist, I always have to stop and remember how lucky I am to have a choice. I know that not everyone can switch. Thanks for the reminder.

Jackie, congratulations on the almost 10 years. I hope you and your doctor can have a nice. long relationship for a lot more years.


Barbara Patch said...

You deserve better. I am glad you know it.

Anonymous said...

Hi Bob , congrats on the 3 for 3! And i totally agree, if ur not getting what you deserve from a doc, switch.