Reconciling Second Opinions - October 11, 2008

Hello all. It's been a week of anniversaries. Still in a mellow frame of mind from vacation travel, we celebrated our 25th wedding anniversary on Wednesday and I was honored by my employer for my 15th anniversary with them on Friday. Through it all we stayed on the new diet with a couple of minor exceptions. We did have one small dessert in Portland, again on Wednesday, and a chocolate on Friday. Pretty easy to stay on the strict diet otherwise.

On Thursday I had an appointment with Dr. Hopkins to discuss the two medical second opinions I had obtained from Dr. X and from Dr. Lamm. After a moderate wait the doctor came in, and I was pleased to see that he had the second opinion writeups that I had faxed to the office a month ago in my file, and that he had read them. There were two areas of apparent disconnect between him and the second opinions. We plunged into a discussion of the first topic, the difference between maintenance protocols that Dr. Hopkins favored versus Dr. Lamm's recommendations (seconded by Dr. X). The primary difference is that Dr. Hopkins favors full-dose BCG treatments for a reducing frequency for three years. Dr. Lamm favors a reduced dosage of BCG (one third in my case) at an increased frequency for 12 years. So we can see the difference is big. We agreed that Dr. Lamm is indeed the guru, and that in the case of the treatment recommended he is somewhat going with his gut feel from experience. Dr. Hopkins explained that all docs do this to some extent, and he acknowledged that Lamm had the experience edge. He also pointed out that few, if any, documented cases existed of BCG maintenance for 12 years - a logical outfall of the fact that maintenance therapy was only pioneered 10 years ago, and not widely adopted until about 2 years ago. I suggested we focus on the first two years of the regimen, because if I avoid recurrence in that period I will have beaten the percentages. He explained that he likes to keep the full dose for two reasons - 1) his patients seem to be able to tolerate it OK (my main concern), and 2) it's easier. I laughed and commented that the first argument was reasonable, and the second was not compelling at all. Dr Hopkins agreed, and said he was willing to follow Lamm's protocol. He acknowledged that there's no evidence of increased risk of recurrence from a lower dose, and it should help with toleration.

At this point I told him that I rather not have them act like architects, each with his own design, equally good, that I the customer can choose from based on my preferences. I suggested that perhaps they could function more like engineers and collaborate to come up with a joint recommendation for my case. Dr. Hopkins admitted that such an approach was possible. I went on to elaborate that they might learn from each other and both groups of patients might benefit, and the doc did well not to roll his eyes at my naivete. So apparently there are still some egos involved, mine included! I said that I would be happy to compensate both doctors for this function. Dr. Hopkins said it should not be necessary, and he took Dr. Lamm's email address and said he'd send a note. If Lamm required a consulting fee, he said we could work that out later.

On the second area of discrepancy, I was under the impression that if Dr. Hopkins saw ANYTHING suspicious during the upcoming cystoscopy, the next step is radical surgery ASAP. Dr. X seemed to support this approach, while Dr. Lamm indicated there was a middle ground. And Dr. X said there is much to be ascertained from cystoscopy while Dr. Lamm says a further resection is ALWAYS required. Dr. Hopkins explained that he could indeed have a firm idea what type of growth I have from observation via cystoscope, but that he would always do another TURBT to verify without question in a lab with a microscope. And he further agreed that there might be some cases (like observing apparent CIS) where they could do an office biopsy for the lab sample. And based on the lab results, the majority of cases would indicate radical surgery, though some could be handled by further BCG treatments, or rarely other therapies. The best option, of course, is that he would see nothing of concern and continue BCG maintenance. I had never discussed this part of the treatment in detail with him, and it was good to have the apparent discrepancies resolved.

That said, I would be reluctant to have a third TURBT within 9 months. It's a lot of general anaesthesia for a body to handle, and the probability of a good outcome (no radical surgery) would be pretty low. I guess I will deal with those feelings later, if the situation arises. As for radical surgery, there are a lot of options to research and questions to ask. I will try to avoid thinking about any of it until necessary. That may not be so easy, especially when lying awake at night. In the meantime the Judgment Day cystoscopy is still scheduled for a dozen days from now on October 23. Another guy in Toronto (HK) just finished his 6th BCG treatment and will be having HIS follow-up cystoscopy the next day on October 24. It's probably not too soon to send out prayers, good thoughts, and positive waves for both of us now!


Michael Howard said...

Happy Anniversary, Steve and Kathryn! Steve, the generosity of women never ceases to amaze me. It's wonderful to be married to a woman who is significantly more attractive than you, isn't it?
Were you referring to YOUR consumption of beer and tequila in Mexico? Or the locals? I'm assuming it was you and K doing the consumption.

Deb said...

Best of luck Steve and all good thoughts and prayers for your upcoming cysto. My husband had his last one in Sept and at that time we found out that the biopsies that were taken during his last TURBT in August (4th since last November) were BENIGN!!! He has another cysto scheduled for December 11th and then, if all is well, three weekly BCG treatments. BUt - our prayers are with you as you go through this - know that you are NOT alone!!! Also - thanks for this website - it's been a GODSEND!!!!


Deb said...

Sorry - that was incorrect - we found out about the biopsies during the follow-up to his TURBT in august - the appointment was in September for the follow-up. Next cysto to be December 11th.

A Dived Ref said...

Steve - good luck and best wishes from over the pond for your Cysto. I know the worry you are going through and can only sympathise but also remind you that it was caught early, you sound like you have pulled together the "A" Team around you and you are a young fit guy so everything is in your favour (sorry favor) :-)

Positive thinking, healthy living and good people around you - we must always be thankful we live in lands where we can actually be treated and get second opinions etc.

Fingers and everything crossed at this end.

Steve Kelley said...

Hi all and thanks for the feedback!

Michael - we were indeed consumers. When are you going to write a new blog post (not copied from somewhere else)???

Deb - Great to hear that your husband had good news. I'm going to be greedy and hope for an all clear WITHOUT another TURBT!

David - Thanks much for the kind words of encouragement. I see you may wish to discontinue your blog. It's inconceivable to me that you would have nothing more to say! The very idea is as mad as a fish.

Lee said...

Also a congrats on the marriage tenure of 25! glad the oregon trip went well and you had the opportunity to touch base with a friend --- I am hoping to see my high school buddy next spring. Spirits up in the coming weeks and wishing you a favorable report. Will email you soon. Steve - stop in the inkubook site again and run autofill with your 230+ Turkey trip photos. See how well it creates a quick book for you of your trip memories. FREE to build it!

Kathiesbirds said...

Happy Anniversary Steve and Kathryn! Prayers are already going up for both of you.