A Patient’s Story: Bart Thomas’ adventures with Prostate Cancer

(Medical History Digest appended at end.)

I live in Central New Jersey. In the fall of 1996, I was diagnosed with prostate cancer. Because of the aggressive nature of the tumor (Gleason 5+4=9), I elected to go with a retropubic prostatectomy. Because, at that time, Dr. Patrick Walsh was not accepting high Gleason scores for this treatment, I went to the doctor who he described as the “Best Resident I ever had”, Dr. Peter Schlegel of New York Hospital.

Once again, because of the aggressive nature of the tumor, and the probability that it was not organ-contained, we elected to go with a wide-margin procedure in order to maximize the chances of “getting it all” I was aware that this would increase the risk of incontinence and virtually guarantee impotency, but I felt the sacrifice was worthwhile.

My current local urologist, one of the top rated in New Jersey, described my situation as “having the best doctors and bad outcomes”. I concur with this, so my purpose in this note is to discuss various procedures I have had, their outcomes, and how I cope. I hope this will be useful to the Prostate Cancer community.

I have not been active in the prostate cancer community on the internet since about 6 months after my prostatectomy because I felt it important to avoid “obsessing” about the disease, and to go ahead and live my life without letting the disease own me. Yes, I have been watchful, but that’s about it. However, your life changes when you have an oncologist on your payroll.

Beginning with the RRP. No problems until we removed the catheter. Flagrant leaking. I had brought two pads for a visit an hour and a half from my home. If I had to do it again, I’d bring a package of them!

NOTE: Pads are much easier to control if you wear jockey shorts much smaller than your waist size. My waist fluctuates between 42-46. I find a size 38 works very well!

Following the RP, my “leakage” was about 6-8 pads per day, less when sitting or lying down. Clearly, this was going to mean some lifestyle changes.

The first attempts to correct my problem involved collagen injections, which was a same-day procedure under anesthesia. Expensive, and, after three tries, we gave up on that approach. Kegels had no effect whatever.

Next, we tried an artificial urinary sphincter, which worked well at first, then slowly started leaking. It had to come out after an improperly inserted catheter caused a perforation of my urethra. This involved a series of operations to restore my urethra, and left me far too “retracted” for condom catheters to be useable.

The next step was to try the urethral sling. This worked perfectly for a week or so, and then failed dramatically. X-rays showed that two screws had pulled out of my ADS (Androgen Deprivation Syndrome) deteriorated pubic bone.

So, I have a black tote bag within reach at all times. In it (along with escapees from my wife’s purse) I carry a supply of pads and some “waste basket liners” in case of an emergency.

In public restrooms, I simply dispose of the pads in the trash. When visiting, I prefer to use the bags and dispose of them after the visit.

I keep a “Diaper Genie” in my bathroom for home disposal, and I sleep on a waterproof pad (rarely wetted), wearing jockey shorts under my nightshirt. I find that I need a much larger supply of the jockey shorts than I had before, so I buy the cheapest I can find at Wal-Mart. As for pads, I find that I prefer Depends.

I am subject to frequent penile irritation. This seems to be due to two types of dermatitis. For fungal, I use (Rx) Clotrimazole and Betamethasone Dipropionate Cream. For “diaper dermatitis” I use Desitin Ointment. Keeping well washed is, of course, vital.

I am able to travel, go to Loong operas, and work part time (8 hour days) on my feet. I have gained a rewarding hobby (bonsai), and enjoy life a great deal.

I just must keep an eye on the clock, be sensitive to the state of my pads, and ALWAYS know the location of the nearest bathroom!

Absorbent pads and pants can be worn inside your underwear, or may replace your underwear altogether. These will soak up any leaks. Your NHS continence service may be able to provide you with free disposable pads but this is based on an assessment of your needs. There is usually a limit to the number of pads they can provide for free.
Penile sheaths look like condoms with a tube coming out of the end. The tube connects to a bag that you can strap to your leg under your clothing. You can buy long underwear with a built-in pocket to hold the bag. Your continence advisor or district nurse will help to make sure that you get a sheath that fits well. Sheaths are available in latex or silicone and in a range of sizes and shapes. You can get them from chemists with a prescription from your doctor.
Catheters are tubes inserted up through the urethra or through your abdomen into the bladder to allow urine to drain out of the body into a bag. You can then empty the bag when it is convenient for you. You can get a prescription for a catheter from your specialist team.
Other products such as reusable bedpads and urinals are also available.
Personal support
Urinary problems can affect your self-esteem, your dignity and your independence. It may also be useful for partners, family and friends to get support, as they might be helping their loved ones cope in practical and emotional ways.