Prostate Cancer Journal

Prostate Cancer Journal - 3

From Menletter February 2004

By Tim Baehr

In December of 2003 I was diagnosed with prostate cancer. Routine screening and yearly physicals have probably caught it in time to be completely curable. After much research and thinking, I decided on surgery as the most definitive way to put an end to the cancer and get on with my life. You can read the first parts of this journal at http://menletter.org/cancerjournal1.htm and http://menletter.org/cancerjournal2.htm.

Disclaimer

I want to paraphrase the disclaimer in the first installment of this journal: My experiences are mine; yours may be quite different. Don't rely on my reports of pain, comfort, hospital experience, etc., as predictions of how things may turn out for you. I will say that in all my research (and there's more stuff in books and Web sites than I could even get to), men have had widely varying experiences with prostate cancer and their treatments. But all of them got through the experience and are happy to be alive and healthier again.

Off to the Hospital

My wife says that the report of my surgery will be very short: Start the IV; arrive at the operating room; wake up. Done. It was almost that simple.

I hadn't had general anesthesia since my tonsillectomy at the age of six. I was scared of the total loss of control, and concerned that the breathing tube would injure my throat, causing a flare-up of my chronic canker sores (which in turn could mean difficulty eating and therefore recovering from the surgery).

We arrived at the hospital about 5:30 a.m. on January 22 for a 7:30 surgery. After filling out a few forms in the admitting office, we were taken to pre-op. I got undressed, put on the hospital johhny, and lay on the bed. More check-ins with a nurse: Yes, I had had an enema the night before. No, I hadn't had anything to eat since midnight.

The anesthesiologist came in. As is typical, this was a different doctor from the anesthesiologist who had interviewed me in the preadmission process the preceding Friday. But he had read my records, and we were able to discuss my concerns. He offered an epidural anesthesia, even at this late date, but I told him I didn't want Dr. Steele to have anything unusual or unexpected to contend with. We agreed that the breathing tube would be as small as possible and lubricated, and would be guided in with fiber optics.

Dr. Steele looked in on me, and some of his associates, who would be assisting with the surgery, stopped by to introduce themselves.

Partners

I have to pause here for an aside. We all have read or heard horror stories of arrogant doctors who wouldn't or couldn't listen, mistakes made by hurried or harried caregivers, and so on. This was never the case with my stay in the hospital. There was an atmosphere of mutual respect that was reassuring from beginning to end. Although I was clear and assertive in my questions and requests, I also tried very hard to be polite and flexible, to listen as well as I expected to be listened to. And my caregivers were unfailingly professional, polite, and flexible. My caregivers and I were colleagues and partners in this adventure.

The Main Event

Ann was wrong about the surgery; I don't remember being wheeled into the operating room. Once the IV was in, I don't remember a thing until I woke up in recovery three and a half hours later (in the middle of a dream about work; oh, well).

Recovery

I spent a long time in the recovery ward, about four hours. Apparently there was some problem finding a bed in the urology floor. Ann came in briefly but was shooed out so I could rest and clear myself of the anesthesia. I was apparently talking a blue streak -- not delirious but possibly deliriously happy to have the surgery over with. The morphine probably helped a lot, too. The nurse thought I was talking to stimulate myself and keep from falling asleep. Like a toddler. Whatever.

Ann reported that Dr. Steele was pleased with the operation and that he thought he'd got all the cancer and spared both nerve bundles. She then went off and busied herself calling and e-mailing friends and family -- and then calling and e-mailing them again when my room assignment changed. We had requested, and got, a private room in a special pod dedicated to urology and plastic surgery patients (odd combination!).

Moving Up and Settling In

Finally about 4 p.m. they moved me to my room. I did a groggy assessment. IV bag dripping some clear fluid (glucose and saline). Little plastic bulb protruding from my abdomen. It's called a Jackson Pratt and it was draining fluid from the surgery site. Baby-blue catheter emerging from the end of my penis and connected to a long tube that drained into a bag. Suture line, held with Steri-strips, starting about an inch or so below my navel and marching down vertically about five inches. My throat was sore, but only slightly.

The rest of Thursday was a blur. Dr. Steele and his associates visited at least once, I think, announcing that the initial results were good: no obvious cancer beyond the prostate itself. The lymph nodes, seminal vesicles, and surgical margins looked clean. Confirmation would come in a detailed pathology report in a few days.

I made some phone calls, hoarse-voiced from the tube that had gone down past my vocal chords. When one of my sons said I sounded strange, I told him to imagine I had a bad cold. That seemed to put him at ease.

Sometime in the afternoon my brother, Tom, showed up on his way back to Vermont from Woburn, Massachusetts. He regularly makes the drive between his home workshop in Vermont and the flute factory in Massachusetts, delivering finished goods and picking up supplies.

The First Night

The projected hospital stay was three days, which boiled down to just two days in the room: I was due to go home about mid-day Saturday.

There was a long bench under the window, and Ann was prepared to spend the night with me. This seemed OK with the nursing staff, even though official visiting hours were over at 8:00 p.m. But I knew it would be uncomfortable for her. Also, we had a sick cat at home that needed tending to. I was in no pain, thanks to the morphine, and the nursing staff and patient care assistants had already shown themselves to be responsive and able. Reluctantly, Ann went home for the night.

I will say up front that my hospital stay was about as good as these things can be, much better than average and miles ahead of horror stories I'd heard. Two small examples: Nurses checked frequently to ask about my pain level. Someone came into my room within minutes, sometimes seconds, of my pressing the Call button.

Pain management was interesting. Nurses checked often, asking about the pain on a 1 (least) to 10 (most) scale. Between us, we decided that a 3 was bad enough to add some morphine to my IV setup. Only once, to my recollection, was I too early for my next scheduled dose. The main goal was to stay ahead of the pain. Once it gets ahead of you, it's very difficult to catch up.

An alternative in some hospitals is a PCA -- patient-controlled analgesic. The patient gets a button to press if the pain increases. The button is hooked up to a computer-controlled machine that metes out doses of morphine but at the same time prevents an overdose. Some patients are very happy with this approach; others can't seem to stay ahead of the pain.

In any event, my pain was very well controlled with the system we were using.

If you're being monitored regularly for vital signs, which seemed to be standard for someone like me who had undergone major surgery, you don't count on getting much rest. Every four hours a patient care assistant would arrive with a little cart and take my pulse, oxygen saturation level, blood pressure, and temperature. The urine bag was checked regularly, too, and my output was measured to be sure my kidneys and bladder were working properly.

We had a mysterious situation with the catheter. Every once in a while it would back up, and the nurse would have to fiddle with the long tube (not the catheter itself) to get things flowing again. This may have been an air lock or some other hydraulic anomaly. It continued at home, and we never did figure it out. I did get pretty good eventually at getting things going again.

Another enemy of sleep was a pair of cuffs on my legs, from ankle to above the knee, that inflated and deflated about every ninety seconds. This was to keep blood circulating and prevent a blood clot from forming.

Friday

On the next day I was allowed to have some liquids at breakfast, including cream of wheat. Funny definition of liquid.

I was also still getting some glucose and water in the IV. One side effect of this was that my body retained more fluid than it could eliminate. The most noticeable effect was that my hands became numb. I have slight carpal tunnel problems in both hands, and the extra fluid was pressing on the nerves.

Friday was the busiest day. In addition to taking care of my vital signs, emptying the catheter bag, emptying the Jackson Pratt, and so on, the nurses had me on my feet for walks around the pod, taught me how to switch over to a leg bag, and more.

The urology staff came in to see how I was doing (very well, thank you).

I had a few visitors on Friday, besides Ann. Blase, one of the men who host a drumming group I belong to, dropped in on his way to the theater. Joanne, a friend and colleague of Ann's, came with her husband, Bob. Joanne went to lunch with Ann, and Bob and I had a long chat. By then I was sitting in a chair.

Bob asked if we could pray together. He's an Orthodox Presbyterian minister, and he knows I practice Buddhism. I said yes without reservations. The spiritual support I had received from everyone, and of all kinds, was an important part of my experience.

Jane, Ann's best friend, came with cookies and news of the outside world.

For Friday night, they took the pressure cuffs off my legs. Sleep was still hard with distractions from the vital-signs visits and the discomfort of the catheter.

Saturday

By now, I was on solid food, had mastered the leg-bag transfer, had the IV removed, and was tired from two nights of minimal rest. The urology team came in and pulled the Jackson-Pratt (no big deal).

We waited for the word that I could go, and then my stepson, James, wheeled me downstairs while Ann went to get the car.

Conventional wisdom would say that I would go home, get into bed, and just sleep or rest. I ended up sitting in a chair, watching TV, and talking on the phone.

This was also the day we had to say good-bye to our oldest cat, Ginger. She had been in kidney failure for three years, and we had been keeping her alive with medication and with daily injections of water. Today, she lost control of her hind legs. I knew her time was coming, and I had hoped I could be with her when we had to put her down. It was not to be; I just couldn't go out two days post-op. James and Ann took Ginger to the vet. Ginger had been James's favorite among our three cats, and he and Ann spent the last minutes with her.

Max came home from college, and we had a mini-reunion in the den. Both of the guys took off then, James for his apartment in Somerville and Max back to Connecticut. Jane came over with dinner. I ate in the den while Ann and Jane ate in the kitchen.

I spent the first, uneasy night checking tubing (with Ann's help), taking painkillers. By now I was off the morphine and on Percocet, along with a stool softener. The morphine high was gone, and the percs just made me groggy and stupid.

. . . and Beyond

The days fell into a routine. I was supposed to limit stair-climbing, but eventually was able to go downstairs for meals. I spent most of the time holed up in the den, watching TV or napping in my chair. I tried to read, but the combination of painkiller and my body's trying to heal itself wasn't exactly conducive to alertness. When a snowstorm was threatening, I finally made a couple of phone calls and hired a friend who does snow clearing in the winter when business at his bike shop is a bit slower.

My body was still slightly swollen with fluids that had been administered in the hospital. I made sure to wriggle my feet often, walk a little, keep my feet up. My toes at one point looked like fat little cocktail wieners. Eventually the fluids all dissipated, right into the catheter bag (three liters' worth one night).

I fell to counting the days to two events: the Superbowl on Sunday and the pulling of the catheter on Monday, ten days post-op. The Superbowl was a smashing success: the Patriots won in the final seconds. I had similar hopes for the catheter, but I was anxious about pain and the possibility that I would be severely incontinent.

Into the Void

My doctor's urology practice does the catheter removal combined with a voiding trial. The leg bag is disconnected and sterile saline solution is poured into the end of it to fill the bladder. Then I stand up and pee out the saline, trying to use sphincter muscles to stop and start the stream. At least that's the way it's supposed to go, in theory.

I asked Ann to be with me in the treatment room as Dr. Steele did the procedure. She could be my calming influence, and also an extra pair of eyes and ears. And theory turned into practice. The saline went in (poured in through a funnel, not squeezed in as I had imagined) until I felt the bladder couldn't take any more. The catheter came out with absolutely no pain or discomfort. I held the water in while I stood up and then did the trial, peeing into a graduated cup so Dr. Steele could measure the output. I was able to stop and restart the stream. Everyone was very pleased.

I went home wearing a Depends diaper, feeling confident enough for us to stop at the drugstore and buy some incontinence supplies: Depends pull-up briefs and Depends liners made especially for sticking inside your own briefs.

The first two nights I wore the full-coverage brief and woke up dry. Then I began to wear the liners around the clock, working my way down from five or six a day to one or two. I was lucky. Of the three kinds of incontinence, I had only stress incontinence.

Kinds of Incontinence

After a prostatectomy, most men will experience stress incontinence -- leaking or dribbling when moving, standing up, climbing stairs, lifting things, sneezing, laughing, coughing. This happens because of two things: (1) the prostate is gone, and it had a role in holding back urine; and (2) the sphincter muscle at the neck of the bladder may have been irritated or even damaged during surgery. A secondary line of defense occurs farther down, and can be helped by strengthening the pubeo-coccygeal muscle by doing Kegel exercises. Stress incontinence and Kegel exercises are quite familiar to many women, especially as they age. In post-prostate surgery men, incontinence resolves within a few weeks to a year. In the meantime, pads worn inside the underwear are comfortable and discreet. Stress incontinence can vary during the day depending on caffeine intake, activity level, fatigue, and so on.

Some men will experience urge incontinence -- an inability to make it to the bathroom when the urge to pee comes upon them suddenly. This also has to do with weakened or compromised sphincter muscles, plus an overactive bladder muscle. Often medications are useful in calming down the bladder.

Overflow incontinence -- urgency that's felt because the bladder doesn't empty fully -- may be caused by a narrowing of the urethra. This is more common after radiation therapy than surgery. This may be treated by further surgery or other less-invasive procedures such as medication, temporary catheterization, and so on.

Emotional and Spiritual Aspects

If major surgery takes a toll on the body, it can also do a number on the emotions. Even three-plus weeks after the surgery, I tend to get misty-eyed while watching movies or emotional when I think about the care that my wife has lavished on me. Earlier on, the effect was closer to basket case. In the past four weeks of luxuriating in recuperation, I've sniffled my way through perhaps a dozen movies.

One cliché about crises is that they can draw people together. The sense I have is that the experience has improved an already close and solid relationship with Ann. I can think of other times when our relationship wasn't quite as steady, and I suspect that the surgery might not have had the same effect as it did.

While I was in the hospital, and for the weeks afterwards, I haven't been very "faithful" to my meditation practice, or at least in any formal way. What seems to have happened, however, is that the spiritual work I've done over the past five years or so (much of it the fruit of men's work) has somehow fortified me to greet pain, discomfort, inconvenience, and fatigue with calmness and optimism. There seems to be a residue of serenity that I can tap into when I can't sleep or when I begin to worry about getting back to feeling like my old self. It's hard to imagine enduring this adventure with any sort of fortitude five years ago. I was a lot angrier and more anxious then.

Setback

Not that there haven't been some anxious moments. I alternate between good and bad days, and sometimes the energy of one day will dissipate for a couple days after. I spent one nerve-wracking long holiday weekend passing blood and clots. I suspected this was natural, but in the back of my mind was the possibility of the bladder-to-urethra connection coming apart. A phone call to the urology fellow on call, and an exchange of e-mails with my surgeon, put my mind at ease. The problem lasted about five days and then went away.

What Lies Ahead

A little over three weeks from now I'll have a follow-up visit with Dr. Steele. We'll probably discuss recovery process, incontinence and impotence issues, and do a general check-in. The most important piece of the visit, however, will be a blood test for PSA. After a radical prostatectomy, the PSA, or prostate-specific antigen, doesn't immediately drop to zero. But a couple months after the surgery, it should be close to zero. Because of PSA residues in the body and variations in lab methods, a PSA around 0.1 is considered "undetectable."

(For men who have had radiation therapy, the PSA may drop to this low level, but first there's usually an upward bump in the PSA before it starts its journey downward. This can be very disconcerting unless the patient has been properly informed.)

So there it is. I don't know if I'll have a huge amount to report next month; I hope not! I'm expecting a low PSA and better continence. With any luck, things will get very uneventful from now on.

Update

On March 10, 2004, I had my first follow-up appointment, including a PSA test. The results are an undetectable PSA. I'll be retested every few months for a while, just to be sure. A rise in PSA would mean that some cancer cells had escaped and are beginning to grow. Given all the other indications and the pathology report, I'm expecting that the PSA will stay at zero. Statistically, given all the data so far, I have a 95 percent chance of never having a recurrence.

Update 2

It’s 2011, seven years out, and I'm fine -- retired, living in Maine, and healthy.

Part of what has made all this bearable has been the support of friends and family. They have my boundless gratitude.

References

In the first installment of this narrative (see the link at the beginning of this installment), I provided a few Web addresses containing useful information and personal accounts.

I've also gotten a lot of information out of the following books:

Ellsworth, Pamela; Heaney, John; and Gill, Cliff: 100 Questions and Answers about Prostate Cancer. Sudbury, Mass.: Jones and Bartlett Publishers, 2003. This is the book my urologist gave me on my first visit after the biopsy confirmed I had prostate cancer. Written by two physicians and a prostate cancer survivor, the book covers all aspects of prostate cancer from screening to sexuality to the social effects of cancer. It is well-organized into seven parts and follows a question-and-answer format. An extensive table of contents and a good index make topics easy to find. There's also a large glossary in addition to marginal notes that define important terms. The cancer survivor, Cliff Gill, pulls no punches about his fears and frustrations, and about his joy about conquering the cancer. I found this book very reassuring in both its tone and its thoroughness.

Korda, Michael: Man to Man: Surviving Prostate Cancer. New York: Vintage Books, 1997. Michael Korda is Editor-in-Chief at Simon & Schuster and also an accomplished author. He wrote Man to Man after being diagnosed with prostate cancer and undergoing surgery for it. I had a couple problems with this book. One, it is out of date medically by nearly a decade. Two, Korda was a rich man with many privileges we ordinary guys don't have. He hired a private plane to take him home from the hospital in Baltimore to his country house in New York State. He was able to hire private nurses and eventually a personal assistant. Three, Korda comes across as spoiled and childish in some of his responses to post-surgery incontinence and other problems. It is to his credit that he tattles on himself so unblinkingly, but even the negative self-revelations have a look-at-me quality. Finally, since this is an account of Korda's personal journey, factual information about prostate cancer and its treatment is interspersed in the narrative and therefore hard to find. There is no index.

Some reviewers at the Amazon Web site said that the book had scared them and that it was best to read it after surgery (which is what I did, by chance: Ann found the book in the hospital gift shop). I can see how this might happen. Korda endured a lot of pain, some of it avoidable (the hospital pain management team was arrogant, and nurses did not work well with them). He had an eight-inch incision with staples. He had severe incontinence, resulting at times in temper tantrums. And he was out of work for a very long time.

Korda does go into some aspects of the psychological and spiritual side of going through his ordeal. Like the hard facts about prostate cancer and treatment, these aspects are interspersed and crop up sporadically. But they're the main reason I'd recommend this book.

Walsh, Patrick C., and Worthington, Janet Farrar: Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. New York: Warner Books, 2001. As one might imagine from a book whose title contains the author's name, Walsh is very famous. A pioneer in urologic surgery, he practically invented the nerve-sparing radical prostatectomy. He's very sure of himself, and rightly so: He's considered (at least in the dust jacket blurb) "the world's foremost authority on prostate cancer." This has made him the urologist to the rich and famous, including John Kerry and Michael Korda (see above). It has also made him think very highly of his own knowledge and opinions, and this tone often comes across in the book. There's even a whiff of condescension regarding other, lesser urologists; the book's subtitle is "Give Yourself a Second Opinion."

The book itself is encyclopedic and well organized, covering what seems to be every possible angle and aspect of prostate cancer. When Walsh isn't being overbearing, he can be very reassuring and comforting. It's a curious mix. I think it's useful to try to separate out fact from opinion. For example, he says that spinal or epidural is the best form of anesthesia for the prostate operation because, compared to general anesthesia, it involves less bleeding and less chance of developing blood clots in the legs. But general may also be fine. I know I'm only one case, but I did not require a transfusion (so, minimal bleeding). And the argument in favor of general is that the breathing tube is already in place in case something goes wrong. Emergency intubation of a crashing patient is not an ideal situation. As for the blood clot possibility, I had inflatable cuffs on my legs for the first 24 hours and I was healthy enough to do some walking around.

Walsh's book has been criticized as loading the dice in favor of surgery. I guess it's easy to get that impression; Walsh after all is a surgeon. But Walsh freely discusses other options. He is in favor of surgery in cases where other treatments may be equally valid, but he doesn't push for surgery when it's not a good choice. Walsh does cast doubt on some of the newer options such as cryosurgery and ultrasound, but mostly because long-term results haven't been determined yet. It's good to keep in mind also that this book is three years old and may have been written a year or so before the publication date.

One final thought: While it's a great idea to make sure you're in good hands with a doctor who is willing to discuss specifics and numbers of his or her outcomes, a book like this can put you into an adversarial relationship with your urologist (or several, as you shop around). Walsh may be the gold standard, but that doesn't make every other doctor brass or tin.

Hint: Try Half.com for these books. Walsh's book in particular is pricey at $25.95 list.