More Frustration & Some GOOD NEWS! - May 28-30, 2008

On Wednesday Kathryn and I drove down to Dr. Hopkins' office to get a debrief on the pathology results. My "friend" the Cat-in-Hat lady signed me in and checked my insurance. Dr. Hopkins does surgeries on Wednesdays, so we were scheduled to see the male Physician's Assistant (PA), Regan B. The Urology Clinic has four doctors, two PAs, some nurses, and a raft of administrative folks. They run patients through like a McDonald's at lunchtime in a normally efficient operation, so we had no issues with seeing the PA. After a few short minutes a nurse led us to an exam room. "Can you give me a urine sample?" she asked. I could not, because I had just used the toilet in the waiting area. "No problem, just hop up on the exam table, and I'll be right back to do an ultrasound."

"Hold on a minute!" I interjected, "What do you think we are here for?" She flipped through my chart a bit and guessed, "Aren't you here for a BCG treatment?" I assured her that we were only here to TALK about BCG treatments, and I was not getting onto any table for anybody. She gave me a funny look, said, "OK," and left the room. A few minutes later Regan came in. He's a big, wide guy, young, in great shape, with coal black and curly hair. Apparently you have to be some sort of GQ model to work in this clinic. After talking for a few minutes, it became obvious that Regan also had not read my chart and had no earthly clue why we were there. We informed him that we were there to get the pathology results and talk about the plan and schedule for BCG treatments, should they still be indicated. "The lab report isn't in here. When did you have surgery?" This was beyond frustrating. I kept trying to get him up to speed on my case, while he refused to listen with full attention. Kathryn finally insisted, "Can you at least call the lab or go look for the report?" Regan thought that was a good idea, clearly because Kathryn is much better looking than I am.

He returned a few minutes later. "Got it! Let's take a look." We had previously established that the probability of a surprise on the lab compared to Dr. Hopkins' visual inspection during surgery was unlikely, and the lab report bore that out. We learned a few new things:
1) The previous cancer areas were free from regrowth, even at the microscopic level. 2) The new biopsies contained some muscle tissue, further supporting the non-invasive diagnosis. 3) The two new tumors removed were indeed "implants" as opposed to new, spontaneous growth. 4) The "implants" were non-invasive and G3, same as the original tumors they came from. 5) The "implants" grew pretty fast.

This was mostly good news, as far as we could tell. Regan added very little information, and we asked, "What's next?" He told us that I was indeed a candidate for BCG, which is also good news. We had about a dozen questions concerning the treatment - how soon could it start, how long could we wait at the outside, how much flexibility in treatment schedule, what action was taken during adverse reactions, and other questions. It turns out that Regan knew very few answers. He assured us there was a handout to give us that would tell us everything, though he had not read it himself. He also said he would have Dr. Hopkins call me the next day. I asked who gave the treatments. "Several of us here are trained to give them. I do some myself." I suggested that he might consider undergoing a treatment, so that he might in the process learn something about it. He laughed, but did not seem too keen on the idea.

We went to the front, gathered the famous handout, and requested a copy of my medical file to give to another doctor for a second opinion. I also had pre-written a "return to work" note per the instructions given by the company nurse. They put it in my file for Dr. Hopkins to sign. I asked how long it would take for the file, and they told me 2 weeks. "What if I get an appointment on Friday?" That was different, they would send it to another doctor right away, but the patient had to wait two weeks because of "legal stuff." This sounded very fishy to me, but at this point they hold all the cards. I explained that we had not learned what we came there for and were expecting a call from the doctor. They made another note to that effect. Kathryn drove me back to work, both of us stewing at the near-total waste of time.

Later that day I contacted the urological pathology department at the Huntsman Cancer Institute in Salt Lake, an independent operation from my clinic. Their doctors were both out on vacation, but the administrator there was very helpful. We discussed the logistics of a second opinion and the timing. Because of vacations they were a month out for appointments, but normally needed only a week's notice. He suggested waiting until my BCG sessions were complete before scheduling the second opinion appointment. He also thought the office attitude about my records was odd, but chalked it up to territorialism of the staff. He offered, "All the urology doctors in the valley here are friends, and they have no problem sharing information." While this was meant to be reassuring, it's less independence than I would have hoped for in a second opinion. I resolved to call Dr. Chuck again to see about an alternate.

The next morning I decided, based on previous experience, to make a pre-emptive strike. I called the urology clinic and explained that we needed more information, and someone should call us. They gated me to the nurses' voicemail, where I left a detailed message. By 4:30 nobody had called, so I called back. "We can't find your chart. Dr. Hopkins isn't in today." I said that Regan had the chart in his hand yesterday. "Regan isn't in today." I asked if she was really telling me there was no way to find anything out today. "I'll call you right back." I was skeptical. But 10 minutes later the phone rang, and it was Dr. Hopkins himself! "I thought you were out today," I said. He replied, "I had a root canal this morning, but decided to come in for an hour. Please overlook any slurring of my speech - I assure you it's not from drinking!" I had a load of questions, and started firing away. Dr. Hopkins patiently answered all of them, thoroughly. Here are the things I learned and/or verified:
Q) When is the earliest to start BCG?
A) I like to wait 4-6 weeks after surgery, for full healing. I don't want any BCG to have access through the un-healed lesions to get into your bloodstream. That's needless risk.
Q) When is the latest we should start?
A) No later than 8 weeks. We don't want to allow a spontaneous growth to start.
Q) When do you do the follow-up cytoscopic inspection? The handout says 6 weeks after BCG.
A) I like to wait a little longer. Sometimes there's residual inflammation that looks like something when it isn't. I shoot for 2-3 months, say 10 weeks after the last BCG treatment.
Q) If you find nothing?
A) Then 3 more weeks of BCG, and inspect again 3 months later.
Q) If you find growth, then we TURBT surgery again and re-baseline?
A) Not really. You have nothing now, verified by the pathology lab. Anything new will be spontaneous growth, and it tells us we have a very strong cancer that's behaving very aggressively. Further surgery risks spreading it, or risking that it becomes invasive. If we see anything at all, at your age we should consider more aggressive treatment at that point.
Q) Doesn't another TURBT buy more time?
A) I feel it drives more risk than the additional time is worth.
Q) So really the only more aggressive strategy is radical cystectomy, correct?
A) That's pretty much the only option.
Q) Ugh. I guess I should begin bracing myself for that eventuality.
A) You have a 50+% chance that BCG will work. If you have no growth for two years and then we see something small, we might consider doing TURBT again. We'll have to play it by ear.
Q) With the BCG, we have a latitude of plus or minus one day from week to week, correct?
A) I'd say so. I have even had patients skip a week to go on vacation. Since we don't really know the mechanism of how it works, we don't know if that's a problem or not. We tend to think in weekly increments, because that's how we live and work.
Q) If there is an adverse reaction, the classic approach is to skip a week, and the more current approach is to reduce the dosage. What's your recommended approach?
A) I usually skip a week, but if it happens, we can discuss other alternatives.
Q) Who actually does the BCG procedures?
A) I prefer to do them myself, for my patients.
Q) I read some research that if BCG is effective in eliminating the papillary cancer, you are at much greater risk for external bladder tumors. Is there a way to watch for those?
A) External tumors? Your ureters and kidneys have the same materials as the interior of the bladder, so if that's what they mean, it's standard procedure for us to do an x-ray screen of the kidneys and ureters every year or two.
NOTE: The doc is good - this is indeed what they meant - abstract HERE.
Q) On getting a second opinion, I guess the timing is any time from now until you do the next cytoscopy, as there really won't be anything new in the file until then?
A) That's correct. Getting a second opinion is a great practice, and I recommend it. So if you are on a business trip to Rochester in a month, you can get a second opinion then with no problems.
Q) On the three month follow-ups, how much leeway do we have? I'm trying to plan around a vacation to Mexico.
A) It's plus or minus two weeks, and we CAN accommodate your vacation!
Q) Thanks for your time. Lastly, I need a note for work. Who handles those for you?
A) I signed the note that you left in your file. All we need to do is fill in the dates for BCG treatment and send in the fax.
Wow. That was a lot of good information in a short time! Let me give you the short version. I am currently CANCER-FREE!!!!! Let the rejoicing begin.! OK, we can stop rejoicing for a second - not clear of danger yet! We need to start BCG treatments ASAP after things heal, to get it going before any new growth can start. No new growth occurred in the last 6 weeks (implants don't count), so that 6-8 week window seems reasonable. Starting BCG on July 2 would be exactly 6 weeks after surgery. That schedule would allow me to do a week-long business trip to D.C. and a week-long motorcycle rally in Taos in June! It does put a lot of limits on July, and it totally kills our plans to join BMWRS and his wife, brother, and friend on a motorcycle trip to Banff. I will personally suffer for this, as BMWRS will give me a ration of crap, and Kathryn will mention for the one-millionth time that she has not yet been to Lake Louise. Sigh. Gotta take the bad with the good, I suppose! Anyway, six weeks of BCG plus 10 weeks of recovery puts the cytoscope inspection on October 15, well after the Mexico trip and our 25th anniversary. The schedule is working out pretty well. So let the rejoicing begin again!!!!!


Anonymous said...

Dang right I'm gonna give you crap. Planing other vacations and NOT riding to Banff and Lake Louise. Jo doesn't want to be the only female on the trip, she needs Katherine there. Mexico? Again? Dang go there in the winter for vacation.

Well you know its great news you got and you know we're praying for ya. And you also know I don't pray much so that's saying something right there.
Your health is most important so do what you must do but we will miss you on the ride.
KBMWRS Or should I change that to KBMWGT?

Steve Kelley said...

You ask: KBMWRS Or should I change that to KBMWGT?

I think Flying Brick captures you best, given your motorcycle preferences and bathroom habits!

Lee said...

Sounds like a realistic and optimistic plan of action ...hang in there... and sounds like your in good care. Lee

Besther said...

Praise The Lord! We rejoice with you brother and will continue to hold you up in prayer as recovery and treatment continue...what a good God we have!

Anonymous said...

The GT ain't a BRICK.

Phyllis Bergman said...

Steve--really wonderful to hear this news--thanks so much for sharing it and putting all the work into the blog--we are all learning from you---as well as admiring your style under pressure!

Happy healing--

hannah said...

Wait, Steve! Before you proceed with BCG, you should watch I AM LEGEND. We don't want you to become a hungry, rabies-infected werewolf mutant. We like you the way you are. And after that movie, a mutant bladder--quilted or grown from other organs--doesn't seem so inconvenient. Yikes!

Seriously, thanks for the updates and a look into what's it's like to have bladder cancer. We are praying for you.

Steve Kelley said...

Thanks to all for the kind words. And the thought of a mutant bladder - well that's just too cool. What would my super-power be? Ability to put out forest fires by peeing on them!

Kathiesbirds said...

Talk about a comedy of errors! I read this the other day but didn't have time to comment. Glad you survived!