Poll: Time for a new doc?

[Jonathan_G]

This is a long story, but please bear with me.

Here's the scenario: I go to my doc and tell him something weird is going on down there. He gives the boys a squeeze and he gets me an ultrasound within two days (Thursday). Several hours after the ultrasound he calls and tells me I've got an appointment the next morning (Friday) with a urologist.

Friday: The urologist says there's a 4mm mass in my testicle, it's likely to be cancer, and it's gotta come out. He's going out of town next week and he'll schedule an orchiectomy for the following week. Someone from his office will call to arrange it. Nobody calls. On Wednesday, I call them and they haven't heard anything from him about me, but they'll check it out.

By Thursday evening I still haven't heard from his office and I'm wondering how long this is going to drag on. And I'm getting increasingly anxious as I become more educated about TC. I email him (he had given me his business card and encouraged me to email with questions), and express my concerns about getting on with the surgery. I also ask a couple other questions, including whether he'll test for testosterone (which the TC Resource Center recommends). He emailed me back the next morning, his office calls that afternoon, and I get an appointment for the following Thursday (two weeks after the ultrasound. In his email, he's pretty dismissive about the testosterone test, saying it "wouldn't be helpful," and I don't press him on it.

The day before surgery I go in for all the pre-surgical testing and he asks me about an implant. He had brought it up the first time I met him and I told him I didn't think so. I decline again, this time more definitively.

The orchiectomy was last Thursday; tomorrow I go in for a follow up. Unless I had a spare in there, I'm pretty sure he gave me the implant. Moreover, he seems to have been pretty laid back about this whole thing. Maybe it's the nonchalance that goes with excellence, but it's unnerving just the same. Admittedly, it's taken me some time to think things through, but I'd expect him to be more sure footed.

This guy's a prominent specialist at a the Cleveland Clinic, and I don't want to dismiss him, but I'm wondering if I should consider changing docs. Am I just being an alarmist, or are these warning signs that I should be acting on? I don't want to overreact, but I don't want to pay a price for being a nice guy either. It seems as if I don't really have his full attention, which is a little unnerving under the circumstances.

So what do you guys think? Should I ride this out with this doc or find another specialist? Thanks for your input.

[Scott]

The urologist's job is nearly over, anyway. You'll move on to an oncologist from here.

Unless I had a spare in there, I'm pretty sure he gave me the implant.

That is more likely a hematoma, also affectionately known as "the grape," a collection of blood that will shrink away to nothing over the next couple months.

[smdemom]

I say that if you don't feel totally comfortable with a doctor, it is time to find a new one.

Also, after my husbands surgery, for perhaps a week or so, it did still look like he had both of his buddies.

[Russell's Mom]

from a nurse

Hi Jonathan,
I am a nurse and my son has TC. Here are a few thoughts.
From my experience, you are right about the doctors level of comfort because of their exposure and expertise in their area of specialty. None the less, you deserve and have the right to timely and accurate information, until it is clear to you!! This is a concern for many people with many illnesses. I agree with Scott, it sounds like you are on a strong path. I would like to suggest that if future concerns or confusions occur, ask the doctor's nurse to help you understand the timeline and goal of the treatment. If she/he does not know, they will find out. That is why they are working with the doctor. Questions and concerns in our minds are like little thorns that scratch all day long and they are not needed. It is not unusual for anyone to be overwhelmed by the amount of information especially as it intertwines with the waves of emotion.

[dadmo]

Jonathan:
Your days with this urologist are almost done so ride it out now. As for the lump I agree with the others, it's a big blood clot and it will go away over the next several weeks.
Have they set you up with an oncologist yet and do you have the results from the blood work or scans?

[Jonathan_G]

Thanks everyone for some reassuring information. I hadn't heard about the "grape." Maybe I'm overreacting. I'm still not sure the two-week wait for surgery was appropriate under the circumstances, but we'll see how the pathology comes out. Maybe it'll be a case of "all's well that ends well."

Once again, it's terrific to have this forum as a source of information and a sounding board for stupid questions and hysterical insecurities. Thanks again.

[Jonathan_G]

Jonathan:
Your days with this urologist are almost done so ride it out now. As for the lump I agree with the others, it's a big blood clot and it will go away over the next several weeks.
Have they set you up with an oncologist yet and do you have the results from the blood work or scans?

Cool. I'm glad for a sensible explanation for the lump other than that the doctor screwed up. The implant was no big deal to me one way or another, but one likes to think his urologist didn't screw up.

I haven't been set up with an oncologist yet; I had the surgery last Friday and I see the urologist tomorrow. I imagine he'll share the pathology report with me and send me on my way.

Regarding the blood work, the tumor markers were normal before surgery. The only scan I had was an ultrasound; it revealed a 3-4mm mass. The urologist speculates (I made him do it) that it's likely to be a seminoma that we can treat with surveillance.

I'll let you know what I find out tomorrow. Thanks so much for your response; it's great to have people you can bounce this stuff off of.

[dadmo]

With no markers it probably is seminoma. Let's hope you're already cured, and yes tomorrow should finish you with the urologist.

[Fed]

Hey dude,
You are doing everything correctly. Bottom line, you have to feel comfortable with your doc, because it's likely to be a pretty long relationship. I had trouble with my first med onc, and I was furious after my first visit. I didn't have to think twice about switching docs, and now I am being seen for my surveillance by someone who clearly knows what's he's doing. Of course, it's never too early to start looking for an oncologist if indeed your path report says it's TC.
Speaking of which, if the pathology shows seminoma, with a tumor that small, surveillance would likely be ideal for you. Nevertheless, you don't have to cross that bridge until you get there; you'll need the pathology, bloodwork, and radiology to put the puzzle together.
Best of luck tomorrow,

[Scott]

...you deserve and have the right to timely and accurate information, until it is clear to you!!

I'm glad Robert drew our attention back to Sharon's post. I remember when I was hospitalized how much I appreciated it every time someone made the extra effort to explain what they were doing and why. The guy who put in my PICC line was especially good at narrating every step of the procedure. It makes such a difference!

[Jonathan_G]

Hi Jonathan,
I am a nurse and my son has TC. Here are a few thoughts.
From my experience, you are right about the doctors level of comfort because of their exposure and expertise in their area of specialty. None the less, you deserve and have the right to timely and accurate information, until it is clear to you!!

I agree; this is a great post.

It seems like the better the docs are, the worse their communications skills are, although I know there are exceptions to this rule. The tough part about communicating with the docs (and their staff) early on in this process is that you're off balance to begin with. You've just received potentially life threatening news and you don't have your facts straight. It's hard to think clearly, to ask the best questions, and to respond quickly and thoughtfully while your sitting there in the docs office for that 15 minute visit. A lot of the important questions only occur to you a week or two later.

That's why this is such an important forum, in my view. And it's good reason to not be bashful about calling the doctor's office to get questions answered later on. Thanks for all the helpful input on this.

[Jonathan_G]

I just got back from my follow-up visit with the doc. The first thing he said was, "I don't have the pathology yet." It was about a five minute visit where he looked at his handiwork and asked how I was feeling. He'll call me when he gets the pathology report.

sigh...

[Fed]

sigh...

Sigh indeed... after my I/O, I was supposed to get my path report on a Friday; it wasn't ready, so I had to wait till Monday to get it. I totally understand your frustration. Make sure he gives you (or faxes you) a copy of the pathology report. You'll need it when you find your med onc.

Although waiting over the weekend may suck, take the time for a bit of a breather and distract yourself with something else. It'll do wonders for an anxious state of mind.

Cheers,