You've been diagnosed with prostate cancer; now what?

I am not an MD. What you read here is based on my own personal experience with prostate cancer, and how I went about deciding what to do about it.

Statistics

It's been said that more men will die WITH prostate cancer, than OF prostate cancer. According to NIH statistics, over the period 2004 to 2008, 156 men in 100,000 were diagnosed with prostate cancer. That's an incidence of less than two tenths of one percent (.2%), but still a significant number, especially if you're one of them. Statistically, about 24 of the 156 men (15%) diagnosed with prostate cancer died of the disease. Of these, over 98% were over 55.

The incidence of prostate cancer rose dramatically in the period 1988 - 1992, probably because of routine screening for the disease using the DRE, and then the prostate-specific antigen (PSA) blood test. Since then the incidence has remained steady or decreased. The NIH estimates that 16.48% of men born today will be diagnosed with cancer of the prostate at some time during their lifetime.

What if you are one of the 16%?

My experience

My PSA record (0 - 4 ng/ml is normal)

I was diagnosed with prostate cancer in January 2004, by my urologist in Kennewick, WA. I was 66. I'd been screened annually by digital rectal exam (DRE) and the PSA test for over a decade. My initial prostate biopsy was done as the result of a consistently elevated PSA (see chart above). The DREs revealed an enlarged prostate, but no tumors.

An enlarged prostate can be common as men age, and this in itself can cause urinary problems -- weak stream, increased frequency -- but does not indicate cancer. I did have to get up 2 or 3 times at night to urinate and had been taking Flomax (Tamsulosin) to improve my urinary function.

A prostate biopsy is extremely uncomfortable, but only slightly painful, and once over with, there is no lingering pain, just a little blood in the urine, and that is short term.

Ouch!

I had a follow-up appointment with my urologist about ten days after the procedure. I received a reminder call from the office receptionist the day before the appointment. She said not to worry, my test was negative. When I talked to the doctor however, he said she'd been reading the wrong report. My biopsy was positive. I felt worse hearing the news this way than I think I would otherwise.

The importance of having a plan

Receiving the news that you have cancer is pretty damned unsettling, so it's important to have a way of coping with the stress. Worrying about your general condition without having specifics -- floating anxiety -- and without the information needed to help you decide what to do about it, is the worst possible situation to be in.

I'm pretty active, I like exercise, I like to read, and I like to write. I'm a scientist, and a project manager. My wife is a retired RN. I had a lot of advantages. I stayed active, I continued to exercise (it really helped take my mind off the prostate cancer), and I started really researching the subject -- the Internet is such a tremendous help -- and planning my course of action. Having a plan immediately reduced my stress.

Assessing the biopsy sample

My biopsy sampled six sections of the prostate. The right base prostate core was assessed as having moderately differentiated infiltrating adenocarcinoma, Gleason's score 6 (3-3) involving 2 mm of 22.5 mm, approximately 9% involvement, negative for perineural space invasion. I had no idea what the hell that meant, so I got in touch with the pathologist who did the assessment and made an appointment to talk with him in person.

The pathologist who assessed my prostate biopsy sample was, I think, unusually helpful. He sat me down in front of a microscope that allowed him to view the sample from one side and me to view it from another. He was able then to point to the signs he saw in the sample that led him to his diagnosis. The microscopic sample looked like the figure below. I couldn't tell a thing from it, even after the pathologist pointed out the telltale signs.

Gleason grade 3 is the most common pattern in prostate carcinoma and is characterized by
small, separate, round to irregular glands with moderate to abundant intervening stroma.

A pathologist doing prostate biopsy assessment should have a great deal of experience in the process, and my pathologist did. In any case, my urologist had sent the biopsy sample to another pathologist and he corroborated the assessment. I was satisfied that I had prostate cancer.

Based on the results of the biopsy, the DRE, and the PSA, I was diagnosed with Stage 1 prostate cancer. My urologist told me that he'd done numerous prostatectomies and would be happy to do mine. "Not yet," I told him. Stage 1 is the lest advanced form of prostate cancer, so I had the luxury of spending some time figuring out what to do about it. My urologist gave me a book, The Prostate Cancer Treatment Book, described by its editors as a "patient-friendly approach" to understanding the way in which prostate cancer was diagnosed, what the stages of prostate cancer meant, and what the options were for treating prostate cancer. It was a good book and I studied it like I did my engineering text books in college.

Seek a second opinion, and then another second opinion

Look, it's your life. It's your sex life. It's your quality of life. Never, ever be shy about asking your doctor pointed questions, for example, I asked my doctor if he felt he was as good at nerve-sparing prostatectomy as a doctor I'd identified at the University of Washington Medical Center. He said no. That turned out to be crucial in my decision making.

In addition, never feel shy or awkward about telling your doctor you plan to seek a second opinion. Doctor's actually like for you to do this. In some ways, it takes the pressure off of them. But whether or not your doctor approves, you must do everything you can to ensure you make the right decision and obtain the best care. This is absolutely essential.

I contacted an oncologist in my area who specialized in brachytherapy and scheduled an appointment. My examination included a prostate volume study, which determined the size of the prostate, and given the size, whether brachytherapy was a reasonable option. If seeds were feasible, how many seeds would be required? My evaluation also involved a CT scan of the pubic arch to determine if the spread of the arch would allow clearance for seed implantation.

Based on the results of her evaluation (yes, it was a female examining my private parts, but by now I was immune to any false modesty), my oncologist told me that I was a good candidate for brachytherapy. She did point out, however, that my enlarged prostate would probably swell after seed implantation and this might entail me being catheterized for some weeks after the procedure.

After thinking about what I been told, I decided to seek another opinion. I did some additional research and located a specialist at Seattle Cancer Care Alliance (SCCA). Seattle is a four hour drive from my home. I drove over the Cascade Mountains several times in my quest to determine the best course of action for dealing with my prostate cancer. If I'd had to fly to New York to be satisfied that I was doing everything I could to ensure success, you can bet I would've done that. As it was, driving over the Cascade Mountains in the middle of winter shows you just how serious I was about this.

The seeds of doubt

The doctor that I met with in Seattle spent quite a lot of time with me and I found his remarks very helpful. Like my local oncologist, the SCCA doctor felt that I was a good candidate for brachytherapy. Although he indicated that my Gleason Score (3+3) and PSA (10.9) would put me “on the cusp” between low risk and intermediate risk, he put me in the low risk category, because he saw lymph node metastases as unlikely, and felt brachytherapy alone would do the job. I asked him about HDR brachytherapy. He said it was done in conjunction with EBRT and felt that in my case it would be “overkill” (an unfortunate metaphor).

I described my urinary symptoms as “moderate,” based on the AUA Symptom Index for BPH (I score between 8 and 12, depending on how honest I’m feeling at the time). I also stated that based on the prostate measurement done by my urologist, I’d calculated my prostate volume as 55.5cc. He said that this was relatively large, but still within the limits for effective seed implantation. He maintained this opinion after doing a DRE.

Of concern was his telling me that the prostate can swell 30% after seed implantation. I had no doubt that given the urinary symptoms I was already experiencing, this would cause me significant difficulty. The docotr indicated that an anti-inflammatory could be used to reduce swelling and an increased dose of Flomax could be used to improve flow. In more severe cases, steroids might be used. Unfortunately, they reduce inflammation and swelling by suppressing the immune response, which could have other deleterious effects. I’d read that urinary problems peaked 3 to 8 weeks after implant and, on average, lasted 6 to 10 months. That was a real negative for me.

The doctor pointed out that although he saw me as a good candidate for brachytherapy, it would not relieve the urinary symptoms I was experiencing; prostatectomy would relieve the symptoms (because the prostate is removed), but with greater incidence of incontinence – another major negative for me. I had already talked with my urologist about radical prostatectomy and was pretty well informed about the procedure, how he performed it (retropubic), and its side effects. Here again, the success of the procedure depended greatly on the skill of the surgeon.

What to do?

I decided on "watchful waiting," and it's not doing nothing. It's basically staying on top of the situation by continuing to be screened and doing so on a more frequent basis -- in my case, every 6 months.

I did something else that proved important. It was something my wife had done for some time. It was called a Kegel Exercise.

As you'll read on the link, Kegel exercises for men can strengthen the pelvic floor muscles, which support the bladder and bowel and affect sexual function. If you're contemplating prostatectomy, start doing Kegels! I did them while I was shaving, while I was driving, and while I waited on the tee to slice my golf ball into the creek. They're easy to do, and they'll be a big help in your quick recovery after surgery or radiation treatment.

My decision to do watchful waiting (also called "active surveillance") was based on an assessment of the various treatment options. The options I considered were: radical (total removal) prostatectomy using the "nerve sparing" technique; conformal external beam radiation therapy; brachytherapy (seed implantation); and watchful waiting. I researched the possible outcomes for each of these treatment options. My results are shown in the table below.

Treatment Option	Recurrent Cancer	Urinary Tract Dysfunction	Erectile Dysfunction	Bowel Dysfunction	Other
Radical Prostatectomy (Nerve-Sparing Technique)	70% free of detectable PSA after 7 – 10 years	Chance of severe incontinence is 1%-3% and mild incontinence ~10%.	>25% for men over 59. Occurs immediately after surgery. Usually treatable.	Rare (can occur due to rectal injury during surgery)	Bleeding, bladder neck contracture, infection, hernia, anesthetic complications. Hospitalization 2-3 days. Catheter in place 2-3 weeks.
Conformal External Beam Radiation Therapy (EBRT)	96% free at 5 years and 86% at 10 years	Bladder inflammation 3-5 weeks into treatment. Dysuria, frequency, hesitancy, nocturia result. Over long term, incontinence in <2%	Occurs in 32% - 67% depending on age. Occurs ~1 year after therapy. Responds well to treatment (70%)	Common, including: diarrhea, cramping, hemorrhoids, rectal pain, bleeding.	6 to 7 weeks of treatment, 5 days/week. Skin irritation can occur.
Brachytherapy	SPI experience is 77%-87% progression-free PSA 10 years after therapy	Problems voiding (7-25%), retention, frequency, incontinence uncommon (<1%)	May occur in 40% - 60% of men. Increased risk of dysfunction in older men. Occurs ~1 year after therapy. Responds well to treatment (70%).	Rectal ulceration and bleeding (<5%); treatable & improves quickly.	Men with significant obstructive voiding symptoms are at increased risk for urinary retention after procedure.
“Watchful Waiting”	Low-grade cancer progression is low after 10 years. However, 63% of men who live 10 years [eventually] die of prostate cancer.	N/A	N/A	N/A	Requires continued PSA monitoring and further biopsies. Disease could become incurable.

As part of the active surveillance of my prostate cancer, I had another biopsy on March 28, 2005. The pathology report for this biopsy was consistent with the previous report -- the right base prostate core (same core as previous biopsy) was positive for infiltrating adenocarcinoma, Gleason 3+3. Involvement was comparable (5 mm of 46.5 mm, 11%). As before, sample was negative for perineural space invasion.

Time to fish or cut bait

I felt that at this point, it was a case of doing nothing, period, i.e., ignoring the problem and hoping for the best, or going ahead and having the problem treated. I decided to have it treated because: it was eminently treatable at Stage 1; I was fit and, in my opinion, able to handle the trauma of the treatment; I had benign prostate hyperplasia (BPH), i.e., an enlarged prostate, and it was causing me increasing problems. The biopsy also showed that I had chronic prostatitis, fortunately without infection. Based on the prostate measurement done by my urologist during my biopsy (4cm x 5cm x 5.3cm), I calculated my prostate volume as 55.5cc (I used the Sloan-Kettering Prostate Nomogram: http://www.mskcc.org/mskcc/html/10088.cfm). This measurement would play in my decision later regarding treatment options.

I'd made the decision to have my prostate cancer treated. Now the question was, which treatment option to use. My first choice had been brachytherapy. This procedure of implanting radioactive seeds in the prostate did not require surgery and appeared to have a reasonable probability of incontinence or impotence. Long-term, the prospects looked good. But after my talk with the specialist is Seattle, I decided that I was more concerned about urinary function than sexual function. Frankly, I figured I could find some way to continue a satisfying sexual life even if I had some degree of ED (it turns out you can, but I didn't have to).

I made the decision to seek a nerve-sparing, radical retropubic prostatectomy. Check out this video (but don't view it if you're squeamish). It gives you a good sense of how it's done, and also, how important it is to have a really good surgeon doing it. The next question was, who was this "really good surgeon" who was going to do my prostatectomy?

The search for Doctor Right

I started my search for a surgeon to do my prostatectomy by reading abstracts on the procedure on-line at  PubMed, which is an excellent source for scholarly papers on just about any medical affliction you can imagine, some you don't want to, and some you may imagine you have after reading the articles. I used the term "prostate cancer." Thousands of hits. Then I used the key words: prostate, cancer, nerve-sparing, radical. My second search yielded hundreds of hits, and I used the terms in the hits to narrow the results down to articles on "open, retropubic, nerve-sparing prostatectomy." Bingo!

I kept running across the name of a doctor named Paul H Lange. I did a wider search on Lange and found a 1999 article in the magazine, Health & Medicine, titled "New techniques in prostate surgery improve quality of life." The article quoted Dr. Lange as saying that a new technique, which he and his colleagues at the University of Washington Medical Center had developed, greatly improved the probability of success for nerve-sparing radical prostatectomy.

I found information about Dr. Lange on the SCCA web site and found that he'd been involved early on in developing the nerve-sparing technique for prostatectomy. He'd also had prostate cancer, undergone the technique (performed by a colleague), and professed a better understanding of what his patients went through as a result. He sounded like the guy for me. I went to the UW Medical Center web site, clicked on Urology, and obtained the contact information I needed to make an appointment.

Before I contacted UW Urology, I went back to the doctor I'd seen at SCCA and asked him to refer me to Dr. Lange. I wanted to make sure I saw Dr. Lange and not someone else. I got the referral, and then I wrote to Dr. Lange directly, describing my case in some detail, and asking for an appointment to meet with him. This was October 21, 2005.

My doctor

UW Medical Center, Seattle, Washington

My wife and I met with Dr. Lange at the UW Medical Center on a chilly fall day in November. Lange was of medium height and build, appeared about my age, perhaps a bit younger (I was 67 at the time), and had the same color hair and complexion as my wife, who is Irish, and looks it. He was an energetic, straightforward person, who told me what to expect before and after surgery, and laid out the possible side effects, without sugar coating.

We talked about the possibility of incontinence, and impotence. Dr. Lange told me what the statistics were for each. We also talked about what could done should either occur. With regard to sexual function, Dr. Lange told my wife and I that I would be prescribed Cialis after my procedure and instructed to take it routinely for several days after the surgery in order to precipitate nocturnal erections. I could have intercourse whenever I felt able.

Dr. Lange also shared his experience with his prostatectomy, which had been recent. He'd been back in the operating room two weeks after his procedure, and said that was too soon, warning me not to do too much, too soon. That was good advice, as I am, by nature, impatient with any form of personal disability.

Before we left, Dr. Lange gave me a copy of his book, "Prostate Cancer for Dummies," with Christine Adamec. It's an excellent book, more wide ranging, and more personal than the Prostate Cancer Treatment Book. I'd get both if you're in the market.

After meeting with Dr. Lange, my wife and I talked about it, and I told her I wanted to go ahead with the procedure. She said "fine," and we went to a very good Seattle restaurant for dinner. The next morning we drove back over the Cascades to the Tri-Cities, and made our plans for returning to Seattle at the end of the year for my surgery.

Surgery

I had the prostatectomy Wednesday, January the 25th, 2006. The day before I followed all the prep instructions, the gist of which you can imagine. My wife drove me to the hospital and stayed with me while I was prepared for the operation. All this went fast and efficiently. My last memory before being wheeled into the surgical suite was being visited by the anesthetist, who talked with me briefly and was so boring, he put me to sleep. I believe that I went into surgery about 9:00 am and was back in recovery about 12:30 pm -- close to the four hours estimated initially by Dr. Lange.

My hospital stay was unremarkable. Pain was well managed with Percocet, administered as requested by me. Tubes placed in the lower abdomen to drain the lymph cavities were removed on the second day and I was able to walk about a bit and wash up at the sink with the help of a nurse’s aid. The feeling of having these tubes pulled out of my abdomen was unsettling, but not painful and I was glad to have them gone.

I was released from the hospital on Friday, a little over 48 hours after surgery, and went back to the apartment with a catheter still in place. When we got there I discovered that my catheter was blocked and thought that it was falling out. My wife rushed me back to the hospital ER where a nurse told me that I probably had a blood clot. She irrigated the bladder through the catheter and got it unblocked.

I had several cases during the ensuing 4 days where blood clots would block the catheter and I had to irrigate my bladder to remove the clots. At first this was somewhat scary, but I got used to it and it became pretty routine. Living with the catheter was aggravating and unpleasant, but after a while I learned to mange well enough to take showers and do some walking around the apartment. I would recommend that if you have this procedure, you request training on managing a catheter. Hospital staff handle catheterization all the time and take it for granted. You shouldn’t.

If, for some reason, you have to have your catheter in place longer than a week or ten days, and have to manage removing it and replacing it every so often, don't worry, you can do it. I had a friend, a rock climber, who climbed with an indwelling catheter. It blocked, and he removed it, irrigated, and replaced it while hanging from a ledge.

My wife was a tremendous help during all this, helping me with my bandages, catheter, medications, and cleaning up, as well as doing the cooking. I wouldn't want to do this on my own. By the way, you can manage a shower, even when you're catheterized. It just takes a little imagination.

My wife and I returned to see Dr. Lange eight days after surgery. His ARNP removed my catheter and had me urinate after irrigating the bladder first and, at his direction I was able to stop my urine in midstream. He said that I should do just fine in regaining continence quickly. When Dr. Lange arrived, he told me that my cancer was one centimeter and confined to the inner prostate. The lymph nodes were clear. Nerve sparing was successful with good negative margin. He told me that my prostate was 89 grams. According to my research, that was three times the average size for men my age, so I was very glad I decided against brachytherapy.

Dr. Lange prescribed Cialis and told me to take a half tab twice a week to stimulate nocturnal erections, referring to a study indicating that men who took Cialis immediately after surgery were more likely to avoid ED longer term – a case of “use it or lose it,” I guess. The first time I took Cialis was bedtime February 5; I achieved a partial erection, and experienced a mild headache lasting a good part of the day. I began experiencing regular nocturnal erections after the 8th of February, and had satisfactory sexual intercourse February 14th and once again on March 4th, without having taken Cialis. Both times I used a condom in case there was blood. I was still having pain at the incision, so having sex wasn’t without some discomfort, but I was glad I could do it!

My urine stream was strong and steady (it felt like being a teenager again). Urine leakage was minimal initially and subsided with time. I wore a pad for the first couple of weeks, but ceased needing one about 3 weeks after surgery. I had occasional minor stress incontinence (when coughing, for example) 6 weeks after surgery. I’m sure that the Kegel exercises I did for several weeks prior to the surgery helped in this regard. Of course, a post-operative regime of Kegel exercises was also prescribed, and I continued to do them each day.

I took a stool softener starting upon discharge from the hospital, but despite this I experienced constipation, soreness, and rectal bleeding for several weeks after the surgery. This finally cleared up February 24th. Doctors are often negligent in prescribing stool softeners in conjunction with narcotic pain medications, and this is something you, as the patient, need to insist upon, as straining to defecate isn’t something you want to do when you’ve just had a 6 inch incision in your lower abdomen.

My testicles and penis looked as though they’d been kicked by horse when I checked myself over back at the apartment where we were staying. Yikes! I had swelling and soreness in my penis and testicles for several days, which subsided about the 11th day after surgery. I took Ibuprofen or Tylenol for discomfort.

After we got back to the Tri-Cities, I gradually started exercising, taking it slow – no lifting over ten pounds. Using the treadmill was tough, because my incision hurt, so I moved to the stationary bike. The incision still hurt, but generally the pain was insufficient to require medication.

I had a PSA test March 2nd, which showed my PSA to be negligible, 0.03 ng/ml. I had a follow-up appointment with Dr. Lange on May 9, 2006, and told him everything worked -- Thank you very much!

Looking back, looking forward

I was diagnosed with prostate cancer January 2004, I had my prostate surgery January 2006; two years later. Because my test results showed my cancer to be at an early stage, and because prostate cancers are generally slow growing, I had time to assess my situation and make an informed decision about what to do. I know men who didn't take the time to explore their options, and whose outcomes were not as good as mine.

What to do about prostate cancer, and even prostate cancer screening has become something of a controversy. For one thing, over 80% of prostate cancers discovered are localized (confined to the prostate itself) and the 5-year survival rate for localized prostate cancer is 100%. For another, the efficacy of the PSA test has been questioned. Finally, some have argued that the cure (prostate surgery/radiation) can greatly reduce the quality of life and may be unnecessary.

Findings of studies being conducted by the National Cancer Institute suggest that PSA screening can lead to the diagnosis and treatment of some prostate cancers that will not cause symptoms or threaten a man’s life, phenomena known as over-diagnosis and over-treatment (i.e., unnecessary treatment). The major side effects of prostate cancer treatment include urinary incontinence and sexual impotence. These are extremely troubling consequences for men who may have lived out a normal life without any medical intervention.

The latest guidance on prostate cancer screening strongly recommends "informed decision-making" by the patient in concert with his doctor. Routine DREs and PSAs are no longer routine. This really places the onus on the patient to stay informed and to weigh the risks and benefits of screening. If you have a first-degree relative, a father or brother, who has been diagnosed with prostate cancer before age 65, the guidelines recommend that you discuss with your doctor what your course of action should be. This should be done around age 40. According to the latest American Cancer Society guidelines, the "core elements" of the information to be provided to men to assist with their prostate cancer screening decision include the following:

• Screening with the PSA blood test detects cancer at an earlier stage than if no screening is performed.
• Prostate cancer screening might be associated with a reduction in the risk of dying from prostate cancer; however, evidence is conflicting.
• For men whose prostate cancer is detected by screening, it is not currently possible to predict which men are likely to benefit from treatment.
• Treatment for prostate cancer can lead to urinary, bowel, sexual, and other health problems that can be significant or minimal, permanent or temporary.
• The PSA and DRE can produce false-positive or false-negative results (in other words, the test may indicate that you have prostate cancer when you don't, or indicate that you don't have prostate cancer when you do)
• Abnormal results from screening with PSA and DRE require prostate biopsies, which can be painful and lead to complications like infection or bleeding.
• Not all men whose prostate cancer is detected through screening require immediate treatment. Some require periodic blood tests and prostate biopsies to determine the need for future treatment.

Frankly, this decision-making "core element" list doesn't do a thing for me. Maybe you'll find it useful. For me, if I was worried that I might get or have prostate cancer because my father or brother had it, or because I was experiencing urinary problems, or erectile dysfunction, or had blood in my urine, or had any other "stuff going on down there," I'd ask to have a PSA test -- it's an easy blood test to do, so do it.

If your PSA is elevated, have your urologist check to see if you have prostatitis and if you do, ask if that might result in an elevated PSA. If your PSA is in the double digits, have a biopsy done. If the biopsy is negative, continue having PSA tests every year. If your PSA is just a little above the 4 ng/ml line, have another PSA done in 12 months, and regularly thereafter. If your PSA tests continue to trend up, have a biopsy done, and go from there. If you want a very simple decision tree that's based on age, see below.

If you are diagnosed with prostate cancer, do what I did, and work hard at determining your best course of action. If I'd been 10 years older when I was diagnosed with prostate cancer, I would not have had the prostatectomy (I would have had my enlarged prostate treated, however). Age and your state of health have to play a big role in your decision about what to do about your cancer.

If you decide to have your cancer treated, know this; the treatment options have greatly expanded, and many treatments for prostate cancer require no surgery, and others require minimally invasive surgery. Do your homework as if your life depended on it. It just might.