Prostate Cancer Journal

From Menletter December 2003

By Tim Baehr

I wake up in the morning and lie there slowly taking inventory. Oh yeah, it's morning. Yes, it's still me. I had an interesting dream. There's a staff meeting this morning at ten. I have cancer.

Usually the prostate cancer is not the first thing that comes into fuzzy focus in my sleep-clogged brain. Once it's there, it lurks in the background, along with what lies ahead.

On this particular morning, I already have a confirmed diagnosis from a needle biopsy and a Monday appointment for an MRI to determine the precise location and extent of the cancer. The Friday afterward, my wife and I will sit down with the urologist and have a long talk. He has already talked about surgery or radiation as treatment options.

So far, it looks like the cancer is localized and not aggressive; the pathologists have given it an overall Gleason Score of 6 on a scale of 2 (very good) to 10 (very bad).

Assuming surgery or radiation, what I'm looking forward to is anywhere from a couple weeks to a lifetime of incontinence and six months to a lifetime of impotence, which may or may not be helped by Viagra or other anti-impotence drugs. The many Web sites on prostate cancer have statistical breakdowns of the likelihood of these side effects. The numbers may be just numbers. But at the least optimistic of their ranges, it looks like I'm stepping into a lot of pain and grief, both physically and psychologically.

Disclaimer

This journal is one man's experience. Don't rely on this account to predict what may happen to you. Whatever pain I experience, whatever good things happen, are just mine. I hope you'll get some idea of what this process is like, especially if you have had some symptoms or blood tests that concern you.

I encourage you to research this disease on your own. There are plenty of books and Web sites. One advantage of the technology that has developed over the past ten years is that there are many ways to treat prostate cancer depending on your age, how advanced the cancer is, other health factors, and your own preferences. This variety is also a disadvantage; you may find it hard to decide how to proceed.

My only firm advice is that you make your choice based on the best information you can gather, and then not look back.

Irony

For over a year I've been writing about men's issues for a men's newsletter I publish, advocating (among other things) regular checkups for prostate cancer. In addition to the writing, I'd been walking the talk: having annual physicals including prostate screening and taking part in the annual Prostate Cancer walk in Boston.

Now I feel like the poster boy for prostate cancer. And I see an opportunity -- a duty, really -- to chronicle my experience. To talk the walk, so to speak.

What, where, why, when, how

I expect many men are pretty savvy about their bodies. But just in case, here's an extremely sketchy prostate primer.

The prostate is a gland located just below the bladder and in front of the rectum. The urethra, the tube that carries urine from the bladder to the penis, passes through the prostate. The prostate is responsible for providing seminal fluid as a carrier for sperm cells that have made their way from the testicles up the vas deferens (plural: vasa deferentia) to the seminal vesicles that sit right behind the prostate. In an orgasm, most of the fluid in the ejaculate was manufactured in the prostate.

As men age, the prostate almost inevitably grows larger. This enlargement can restrict the urethra, causing men to have to urinate more often or even have difficulty with urine flow. Some men take prescription drugs for this (Flomax being one of them) or herbal remedies (saw palmetto). In some extreme cases, surgery is needed to restore flow.

Nearly all men eventually end up with some cancer cells in their prostate. Cancer cells differ from normal cells in that they grow faster and have an abnormal shape. If they grow too fast, and if they spread to other parts of the body, they can kill you. If a man has only a few cells and is symptom-free, he'll probably never know he had a few cancer cells in his prostate. He'll die of something else first, even if he lives to 90 or more.

Some men over 70 or so who have been diagnosed with cancer may be counseled to do nothing if the cancer is small and slow-growing. Such men can usually be expected to die of something else, even though they "officially" have prostate cancer.

By the numbers

One in six men can expect to be diagnosed with prostate cancer. Most will survive, but some three percent of all men will die of it. That boils down to about 30,000 deaths per year. If the statistic seems dry and academic, consider that these figures compare to the much better-known numbers for breast cancer: One in eight women, and about 35,000 deaths per year. They've got their pink ribbon (even worn by some men) to show sisterly solidarity. We men have a blue ribbon, but at this point no one seems to wear it.

Other numbers come closer to home. If you're over 50 (45 for African-American men or any men with a brother or father who has had prostate cancer), you probably get a digital rectal exam, or DRE, and a prostate-cancer screening blood test with your annual physical -- that is, if you get an annual physical.

The DRE involves the doctor's putting a gloved, lubricated finger into your rectum to feel for unusual firmness or rough spots on the part of the prostate he or she can feel through the wall of the rectum. The test can feel mildly uncomfortable and, for some men, a little embarrassing.

The blood test is for PSA, which stands for prostate-specific antigen. This is a chemical created in the prostate in all men, whether they have cancer or not. Certain conditions, such as prostatitis (inflammation), BPH (benign prostatic hyperplasia, or enlargement), or cancer can raise the PSA score by sending the antigen into the bloodstream. A score of 4.0 or higher is considered a red flag needing further investigation. Some urologists are suggesting a lower threshold, around 2.5.

As with any lab test, the PSA can differ by the method being used and other factors such as the man's general health.

In my case, the numbers from various tests and testers went like this over two years: 3.8, 4.0, 3.3. These numbers, even the 4.0, didn't particularly concern me -- partly denial and partly because I have a slightly enlarged prostate, and that alone can raise the PSA. The tests were done by two doctors at two labs.

Suspicions

My primary doctor felt something suspicious in the DRE at my annual physical and referred me to a urologist, Dr. Graeme Steele. Dr. Steele interviewed me, repeated the DRE, and did a further blood test. This time, he ordered an analysis of free and bound PSA because bound PSA binds to tumors. He was looking for a free-to-bound ratio of 30 percent or more.

A short time after, Dr. Steele told me the PSA result. Mine came in at 4.6, with 18 percent free. Time for a biopsy.

Confirmation

A biopsy would be the best way to confirm that I might have a serious problem. I knew from my reading that a biopsy involves using tiny hollow needles to remove small amounts of tissue from the prostate. I prepared by abstaining from aspirin and vitamins for ten days. Aspirin, even the 81 milligram baby aspirin I was taking, could cause extra bleeding from the needle punctures. The afternoon of the biopsy, I prepared by administering myself a prepackaged enema from the drugstore. This is so that the medical folks can have reasonably clean access for an ultrasound probe.

The biopsy is preceded by an ultrasound of the prostate. I knew I would have a probe inserted in my rectum. I didn't know it would hurt like hell. Carol, the nurse, was as gentle as she could be, but each man has his pain threshold and anatomical peculiarities that could increase the pain -- hemorrhoids, tight anal sphincter, and so on.

I have to admit the ultrasound was quite painful. Not all men find this so; I may have irritated the rectum with the Fleet enema I took in preparation, or I may just have been very tense. But I got through it (Carol was super), and we got some clear pictures to show to Dr. Steele.

Dr. Steele viewed the ultrasound pictures and then proceeded with the biopsy. First he injected a local anesthetic to make the procedure more comfortable. Then Carol inserted a an ultrasound probe that felt smaller (I didn't get a look at it) so Dr. Steele could see where to take the samples from.

The biopsy needle device is a spring-loaded gun that shoots a hollow needle into the prostate. When the needle is withdrawn, it contains a tiny sample of prostate tissue.

At first, Dr. Steele said he would warn me just before he pulled the trigger, so I wouldn't flinch. After a few samples, however, I wasn't flinching, so he simply continued in silence except for exchanges with Carol about where to aim the probe. The jabs of the needle felt like tiny, remote bee stings, not particularly painful. But there were a lot of them: five from each side of the prostate. This number varies with doctors and patients.

After the procedure, Dr. Steele was quite upbeat. He'd seen many areas of calcification in the ultrasounds. These could be from a prostate infection from years ago, one that I may not even have been aware of. And they could explain the variations in my PSA numbers.

It occurred to me that I now had something in common with people who claim to have been abducted by aliens. I had been taken to an unfamiliar place. I had been probed in one of my most private orifices. There was pain. Samples had been taken. I had been returned to earth.

I went home to wait.

Several days later, I got the news: On one side of the prostate, one in five samples showed adenocarcinoma -- cancer. On the other side, four out of five showed cancer. On the Gleason scale, the cancer was rated as "moderately aggressive."

I was one of the one in six. Now the job was to avoid becoming one of the three percent.

Dr. Steele's office made appointments for me to have an MRI and a follow-up visit.

Feelings

After the confirmed diagnosis, I was a bit freaked out by the prospect of having some life-threatening junk in my body and the further prospect of having to cut it or burn it out. I went through my days in quiet edginess, not quite panic but with nagging feeling of impending doom. My life was about to change: how much?

I shared basic facts of the situation with a bunch of men I send a men's newsletter to, and with colleagues at work. Expressions of support flowed in, along with my wife's unconditional support.

At some point I turned a corner. I have cancer. I am probably not going to die from it. The treatment will be inconvenient and sometimes painful. Full recovery may take a few months or a year or more. But… But…I am not simply a body in trouble. To whatever extent I am, or have, an infinite being, I occupy a meat-based life form that is not all of what I am. Not only that, I can think of other men in worse circumstances. Men at war. Men with incurable cancers. Men being raped daily in prisons. Yes, I'm the only one on my particular path, and I will complain about my pains and indignities. It is my path after all. But I'll do so with some perspective about the larger picture.

Monday

I strip, put my stuff in a locker, and don two hospital johnnies, one in front and one in back. No watch, no jewelry. You can keep your wedding ring on. The instructions are clear: the hugely strong magnets in the Magnetic Resonance Imaging device will mess with anything metallic.

I ask about the clips I might have still inside me from a vasectomy 15 years ago. I can't remember if I've been made sterile with clips or sutures. Will the MRI rip the clips out so I could bleed to death internally? There was some scurrying about, and the MRI doc comes back with "No problem. Let's go."

We start out with an injection of a medicine to keep my lower intestines quiet so their movement doesn't affect the scan. Once again the alien abduction scene: Anal probe, weird machinery, strange sounds.

The anal probe is to provide a target for the magnetic beams. Again it hurts, but not like the first time. This one will stay quietly in place during the procedure. As it goes in, I grunt, "I don't suppose you can use some kind of numbing gel." The doctor replies that there is Lidocaine in the lubricating gel. Big whoop. It still hurts. But the pain subsides as soon as he has the probe in place.

The technician hands me earplugs; the machine can get quite noisy.

I have to be in the room alone; the operator and the doctor sit outside. The MRI machine is huge and white. It consists of a motorized table, on which I'm lying, and a white tunnel just barely big enough to accommodate my body. Little motors whirr, and I slide into the cocoon. This is definitely not a place for claustrophobics. (Real claustrophobics have some alternatives. They can have a friend in the room to stroke their feet and talk to them. They can have headphones with favorite music. They can be sedated.)

The noise starts. Low hum. Ratatatat. Bang. Ratatatat. Bang. I can feel my ring dancing on my ring finger.

I'm in a science-fiction movie. I'm not scared, but the sounds are very loud. I do some breathing exercises and try to meditate. This will last about half an hour, which is a long time to lie perfectly still and listen to percussive electronic sounds.

Soon it's over, and I go to the dressing room, wipe the lubricating goo out of my crotch, get dressed, and meet my wife in the waiting room.

We go down to the records library, where the technician prepares a copy of the MRI slides on CD for us to take home. We go home and look at the pretty pictures, trying to guess which shadow means what, and whether that big lump is the prostate or the magnetic probe. It's a good thing someone with training and experience will read the real films; we have no clue.

It's time for more waiting.

The verdict -- sort of

The following Friday Ann and I sit down with Dr. Steele.

We were expecting a full report on the MRI, but it's not complete. Dr. Steele says that a preliminary look indicates that the cancer is contained within the prostate, and that the doctor who does the reading has an 85 percent accuracy rate.

We discuss prostate anatomy and what a radical prostatectomy (surgical removal) would entail. He talks about nerve sparing (of the nerves involved in erections). We discuss my concern (actually my only major concern) about incontinence. Dr. Steele seems quite confident; he's the continence expert in the urology department, and he assures me that being dry is a major concern of his.

Dr. Steele also discusses brachytherapy, a method of delivering cancer-killing radiation doses by implanting into the prostate hundreds of radioactive "seeds" the size of rice grains. The implantation of the seeds would be guided by a sophisticated 3-D scan. The seeds are never removed; their radioactivity decays over the year after implantation.

I know already from my reading that radiation is less likely to cause impotence and incontinence, at least in the first months following the procedure. But there are chances for these side effects later on, plus the possibility of rectal bleeding and diarrhea. And there is more of a possibility that the cancer will reoccur than with surgery. Also, there have been some cases in which the radiation has caused cancers in other parts of the body. The numbers are fairly low, but radiation seems to be more appropriate for older men (at 75, a recurrence in ten or twenty years will probably not be what kills you), or in situations where surgery is a bad idea (frail health in general or some other condition that is more likely to kill you than a recurrence).

We discuss all these factors. I'm convinced that surgery is the only way to go, I want the damn thing out, and I don't want to feel like I'm carrying around a time bomb -- of cancer or radiation -- in my crotch. Nevertheless, Dr. Steele wants me to get a second opinion from a medical oncologist who specializes in genitourinary cancers. My insurance covers second opinions, and this is due diligence for both me and Dr. Steele.

The first available appointment is for December 29, my birthday. I want something sooner, so the surgery (inevitable, I think) can happen sooner. Dr. Steele and his scheduling person find me another colleague, Dr. T., who can see me two weeks earlier.

Somewhere in all this the MRI results come in. The cancer has spread into the capsule, the paper-thin tissue surrounding the prostate, but it hasn't broken through it. The seminal vesicles, lymph nodes, and nerve bundles look OK. The vesicles and lymph nodes will be removed in surgery and sent to a pathologist to check for cancer. The nerve bundle on the more cancerous side will probably be removed anyway, but one side will most likely be spared. With a boost from Viagra or one of its successors, I should eventually be OK.

But there's no sense living in illusions, either. For all the sophisticated imaging with ultrasound and MRI, there's no substitute for actually getting in there with a knife. Dr. Steele could find that things are better, or worse, when he gets inside.

A few days later I get the date: Surgery will take place on January 22, unless Dr. T. has compelling arguments otherwise.

Dr. T.: Everything's fine but the MRI

Ann and I met with Dr. T. at the Dana-Farber Cancer Institute on a wintry Monday in mid-December. There had been a pile of snow the weekend before, the second heavy, early storm of the season. My muscles were a little sore from shoveling, and I was thinking that, after the surgery, there would be no more shoveling for the rest of the winter. A mixed blessing.

Dr. T took an extensive history and then took us step by step through the diagnosis, the numbers, and what everything meant. She told us that, because the capsule had been penetrated, I wasn't a good candidate for brachytherapy -- the seeding method of delivering radiation. The alternative would be EBRT -- external beam radiation therapy. Dr. T. told us that modern methods of delivering radiation caused a lot less collateral damage to the bladder, urethra, and rectum. She also said that the longevity outcomes were virtually identical to those from surgery. EBRT is done on an out-patient basis, a few weeks of daily treatments.

Radiation therapy at Dana-Farber for cases like mine is typically preceded and followed by hormone therapy to shrink the prostate and make radiation more effective. (Hormone therapy is also used in advanced prostate cancer that has spread to other parts of the body, and when the cancer recurs after other treatments such as surgery or radiation.)

Hormone therapy suppresses testosterone and shrinks the prostate. It is used before radiation therapy to make the radiation more effective and lessen the side effects from radiation (because the radiation target is smaller).

Possible side effects from hormone therapy include muscle loss, fat accumulation, breast enlargement (gynecomastia), loss of libido, loss of energy, possibly depression -- which slowly wear off when the hormone therapy stops.

Side effects from radiation can include scarring and narrowing of the urethra, bowel problems, and bladder irritation. Impotence is less than with surgery, and incontinence is about the same but its onset is delayed. With either radiation or surgery, about 30 percent of men will experience some incontinence; for about two percent, the incontinence will be permanent.

Long-term side effects from radiation can include cancers caused by the radiation itself. These, such as bladder cancer, may not show up for ten or twenty years. The newer radiation techniques -- seeding and EBRT with better aim (called conformal radiotherapy or Three-Dimensional Conformal Radiation Therapy) -- should have fewer long-term complications, but the data are scant.

With all these negatives for radiation therapy, I wondered why a younger man would choose it. I already knew that men 75 and older, or men with other health problems, might want radiation because surgery puts a larger strain on the whole body. But according to Dr. T., a significant number of younger men choose radiation because it is less disruptive to their everyday lives -- they can get back to work sooner.

I had all the confirmation I needed: yank the sucker out and be done with it. Dr. T. thought it was a good choice.

Then Dr. T. dropped the bomb. With capsular penetration, regardless of the treatment choice, there is a 50 percent chance of a few cancer cells having escaped eventually to spread into other parts of the body. Within ten or twenty years, I could find my PSA level rising and cancer appearing in my spine, bones, and so on.

We froze. Ann became pale. I took it a bit better: Let's solve the immediate problem first and not worry about something that, at this point, is a statistic waiting for data.

When we got home, I e-mailed Dr. Steele and asked him about this penetration stuff. He e-mailed me back the same night with some reassurances. He had looked at the MRI with the doctor who specializes in reading them. The penetration is "very focal and minute," he said, and the 50 percent risk may not be relevant.

More waiting -- and blessings

So here I am about a month before the surgery with nothing to do but wait. Somehow, I'm not nervous or filled with dread. I can think of several reasons for this:

● I've gotten educated: I know about different kinds and severities of prostate cancer, the methods of treatment, the side effects, and the long-term prospects.

● I have total support from my wife in all areas, including possible impotence and incontinence. Our attitude together is that we'll get through it all. An intimate, caring relationship is tremendous protection against fear and dread.

● In some ways, I think my sons may be the most upset by all this. A parent's mortality can be a disturbing blow; Dad's supposed strength isn't perhaps what it seemed all along. But I know they're pulling for me, even if they don't say much.

● My friendships and connections with other men have given me strength and inspiration. A community of men provides an intimacy and set of common bonds that complements and augments the kind of intimacy I've found in marriage.

Next -- Waiting and a pre-admission visit

(see http://menletter.org/cancerjournal2.htm)

Then -- The surgery and aftermath

(see http://menletter.org/cancerjournal3.htm)

Useful links

Gil Gaul's first-person account of his prostate cancer adventure, plus some good links from Men's Health Magazine

http://www.menshealth.com/health2/prostate_why_me.html

National Institutes of Health site - lots of links and good information

http://www.nlm.nih.gov/medlineplus/prostatecancer.html

Centers for Disease Control site:

http://www.cdc.gov/cancer/prostate/prostate.htm

Three useful books are listed at the end of the last installment.