“IT MAY BE YOUR BODY, BUT IT’S MY HEART…”
Prostate Cancer: A Woman’s Perspective
by Barbara Payne
Waiting for the results of her husband’s prostate biopsy was excruciating. “What if…” kept invading her thoughts no matter how hard she tried to keep the anxiety at bay. At the best time of their lives — with the kids grown, educated, happily married and starting their own families — would this insidious disease change everything? Bill hadn’t been sick more than a handful of days during the last decade, and never for more than a day or two with a cold or the flu. He ate right, got plenty of exercise (on the golf course and off), and looked a lot younger than his 62 years. How could he have cancer? No, it couldn’t possibly be true.
Like most women, Anne* was dismally unfamiliar with the male anatomy. If it hadn’t been for all the media coverage about prostate cancer and the famous men who had it, she wouldn’t have known anything at all about this tiny, walnut sized gland. Even so, that was about the extent of it. She had the “impression” that it had something to do with a man’s sexual function and — from the television commercials — with urinary flow and frequency — but she was old enough to believe this was not a topic discussed in polite society. Until Bill’s routine company physical (when the PSA test showed a significantly higher level than last year’s results, prompting the further tests and subsequent biopsy) Anne was blissfully unaware that her husband was approaching the age group in which his chances for prostate disease would increase. His doctor might have reminded him, but Bill didn’t pass that information along to her.
“I think that we all have a kind of barrier we put up around us to shield us from all the things we want ‘not to know.’ We take a lot of pride in being up on what’s going on in our ever- expanding world…in our own community…and even with our family members. But, when you suddenly have to face IT — you know, the Big C; the disease that can so dramatically and inexorably change everything in your life from that moment forward — you have absolutely no idea of what you will do,” explained Anne.
“Oh, you think you know. You hope you’ll be brave and stoic, and do and say exactly the ‘right’ things, but you don’t know for sure. When IT happens to someone else, you can be sympathetic, and supportive, and reassuring, but how do you know what you’ll want — or a loved one will want — if IT happens to you? The short answer is that you don’t…you simply don’t know.”
“When the test results are still out,” Anne explained, “there are still some games you can play. You can bargain with promises…as in, ‘if only…I won’t’ or ‘I’ll never…if.’ You think of everything that’s at stake. And then, the worst case scenario hovers in the corner of your mind… ‘what would I do without him?’ Like it or not, we’re all selfish creatures. We don’t mean to be, but even when it’s a loved one who has — or is about to be diagnosed with — cancer, we can’t help thinking how it will impact us…how our lives will change…or what the news will do to our relationship. The thoughts are there in the dead of night; you don’t take them out and inspect them in the daylight hours.”
“Someone I know used an expression once that perfectly described a tumultuous situation — ‘emotional fruit salad’ he called it. That’s exactly it. The situation looks different with each ‘bite;’ one is full of peaches and the next one has nothing but grapes with seeds. Then I remind myself that I’m not the one awaiting diagnosis…my husband is. Somehow, after 35 years of marriage, the line that sets off where one of us ends and the other begins has become blurred. It sounds trite, but it may be his body…but it’s my heart.”
Then, you have to come face-to-face with your fears and deal in the currency of reality. This poses a real challenge. You don’t want your husband to know how absolutely terrified you are; how the very idea of cancer invades your dreams and startles you awake in the middle of night . As you sit with him in his doctor’s waiting room to get the verdict, it’s hard to keep the lost sleep and anxious thoughts from tracing lines around your mouth. Or to keep your chin from quivering. Or to stop the tears you’ve held back from tumbling over and spilling down your cheeks. But you’ll try. You’ll give it your best shot to ‘be there’ for him (what a foolish phrase; as if you could be anywhere else).
“There has been a lot of talk about managed health care, and grumbling about what’s happened to doctor-patient relationships. But, when it comes right down to what they used to call the ‘nitty-gritty,’ it is obvious to me that people who have invested the incredible number of years necessary to study the amazing human body and the diseases that attack it care deeply about preserving life. They abhor delivering potential death sentences and they hate to admit defeat at the hands of a nasty disease. Of course, they are people, too. They have the same dreams and fears as the rest of us…a medical degree did not inoculate them from life. Doctors — and their loved ones — get cancer, too.”
“That said, some doctors are warmer and friendlier than others,” Anne continued, “and some are more matter-of-fact, and perhaps even speak more plainly. We might compare several physicians’ credentials and what we perceive to be their ‘bedside manner’ during an initial visit, but we don’t get to pick our doctors based on exactly how they would tell us devastating news, or how compassionate they might be if the diagnosis turns out to be cancer. I can tell you from experience that, when you’re waiting for the doctor to report the results of a biopsy, you’re in a kind of suspended animation anyway. The physician is reduced to being a talking head, saying things you don’t want to hear, over the cacophony already going on in your thoughts. You’re in denial, big time…it must be a mistake; it couldn’t happen to us…yadda, yadda, yadda.”
“But, maybe hours later, you realize that this time it has happened to you. By association, you have joined the exclusive club of cancer victims…the people for whom — as one cancer survivor put it — time is forever divided into B.C. and A.C. — before cancer and after cancer. Every muscle in your face is frozen into something you hope is an encouraging smile as you grip your husband’s hand and give it a little squeeze. There is an awkward silence, broken by a sharp intake of breath that is exhaled in a hiss as the man you love struggles to absorb the news. The doctor shuffles papers and waits for you to say something — so he doesn’t have to, I suspect.”
“What do you say? ‘Are you sure,’ perhaps? Or maybe, ‘Could the tests be wrong?’ Conversation is just a place-holder anyway, until you can gather your wits and think logically about the enemy that now stares back at you with the frigid finality of fact. The games are over; the diagnosis is in; the ball is in your court. The only question to answer right now is, ‘What’s next?”
Digesting the News…
Anne and Bill are among the fortunate couples who have maintained a close and loving relationship over the years. Their marriage has had the normal ups and downs, but their commitment to each other and to solid family values forged the very strong adhesive that binds them together. How they would react — together and individually — to the news that one of them had a potentially life-threatening disease; however, was uncharted territory.
What Anne didn’t know was how her husband would respond. Would he want to talk about it? Or, would he internalize his concerns and fears, and shut her out while he sifted through the news in his own way. Would he want friends and family to know what he was facing, or keep the information to himself?
They were quiet in the car after leaving the doctor’s office, with conversation focusing mainly on little things as they studiously ignored the “five thousand pound gorilla” leaning over the seat. Anne nervously flipped through some brochures the doctor had given them that explained the surgical procedure he recommended, and then looked through a pamphlet that addressed cancer issues in the broader sense. The diagnosis was beginning to sink in…her husband had cancer and may have to undergo surgery. “If I feel threatened and afraid,” Anne thought, “what must Bill be feeling?”
As soon as Bill had reported that his routine PSA test results indicated there might be a problem, they both had started finding out more about prostate disease in general, and also read specifically about prostate cancer. By the time he had been retested to check the accuracy of the PSA results, and followed up with a digital rectal exam by his urologist, they had accumulated quite a stack of information. They had learned some of the anatomical “language” and understood that, even if it did turn out to be prostate cancer, there was an excellent chance for a cure if this cancer is found early. Since Bill had not experienced any symptoms that sometimes accompany the disease in its later stages, they had gone for the biopsy results with some degree of optimism.
During her research, Anne had read that, after being diagnosed with prostate cancer, men often felt that their manhood was under siege and the family jewels were in jeopardy. This threat was enough to humble the strongest of men, she had learned, so she was not quite sure how to approach the subject with Bill even though she had lived with this man most of her adult life. Anne suspected that although no decision about treatment had been reached, Bill was already worrying about impotence — one of the potential side effects of prostate surgery. They had always enjoyed satisfying sexual intimacy, but it wasn’t something they often talked about. She was therefore waiting to follow his lead, hoping for a gentle way to introduce the subject, knowing full well that the quality of communication they established at the outset would set the tone for the long haul.
“I’d like to go ahead and get a second opinion right away,” Bill said, finally breaking the silence. “I’m not sure I can take this all in at once. You know, it’s amazing. After doing all that reading about prostate cancer, I never once thought it could happen to me. Somehow, I was just sure all this would turn out to be a mistake. I already feel like I’ve lost control of my body; you know, having to give up any shred of modesty. I guess I’m just going to be poked and prodded until this is over, and I might as well get used to it. Oh, the indignity of it all!” he ranted with a self depreciating smile.
“I’d give the world that this didn’t have to happen to you,” Anne said, “and I feel helpless that there isn’t anything I can do to make it go away. It goes without saying that I’m here to provide whatever you need, so please don’t be afraid to ask for my help. Frankly, it will make me feel better…more useful…to think that you need me or that I might be able to help.” Anne was amazed at how steady and firm her voice sounded when she was virtually screaming inside. “So, where do you want to go from here?”
A week passed before Bill was able to see another Urologist for the second opinion, which turned out to be the same as the first. The specialist confirmed that since 1. Bill’s tumor was non-palpable (which means it couldn’t be felt during the digital exam); 2. the biopsy found cancer in three of the samples and the tumor ranked as a 4 on the Gleason score; and 3. his PSA level was 6, he felt confident that the cancer was still confined to the prostate and had not yet spread to nearby organs, the bone or lymph nodes. Although he wasn’t comfortable predicting exactly how fast the cancer might grow or if it would spread, the doctor explained Bill’s treatment options as waiting to see what happened and then deal with it accordingly; having surgery; or undergoing radiation treatment. If he were in Bill’s place, the doctor advised, he would have the surgery.
As a lifelong pragmatist, Bill immediately discarded the idea of waiting around to see what might happen — would it spread? would it grow? “I want to get rid of the cancer as fast as I can, and then do whatever is necessary to keep it from coming back,” he told Anne as they were discussing the topic that had dominated their conversation for weeks. “I expect to be around for a lot of years yet, and I don’t want to be constantly worrying about what the next test will reveal. It’s bad enough to know it’s in there now, without having to dread the results of a test every six months. Let’s get it over and done with. Both doctors agree that we’ve caught it early enough for a cure, and — because this kind of cancer is relatively slow growing — I can take the time I need to make an informed decision I can live with.”
“I don’t think I fit into the profile of men for whom radiation is appropriate instead of surgery. It’s something I want to know more about, and — God forbid — if I should have a recurrence later, then radiation might be an option. I guess there are several other things we might as well get out in the open, too,” Bill suggested.
“I’m worried about the potential side effects of radical surgery. Frankly, the idea of having to go under anesthesia scares the hell out of me and, from what I’ve read about prostatectomy, it’s a long, tedious operation that takes lots of skill to avoid damaging the nerves involved in sexual function. I really hadn’t thought we’d have to give all that up just yet,” he smiled with a little of his old sparkle.
Anne hadn’t realized that she had been holding her breath and now let it out slowly. Bill was fidgeting with some papers, but finally raised his eyes to look into hers. She stared back calmly and directly and said, “Me either. But if it comes down to being able to make love again or losing you, it’s a no-brainer. Let’s just make sure that your surgeon has had lots of practice and has a good track record in avoiding the side effects.”
Their search for information led them to the internet and to several support organizations. Bill decided that he would like to attend a local meeting of US, TOO* to talk with some men who had been where he was, and to learn what they decided and why. Since there is a little bit of the armchair quarterback in most men, Bill also wanted to ask them if they would change anything if they could go back to the point of diagnosis and do it over again.
As more family members, business associates, and people in their “circle” learned of Bill’s diagnosis, Anne was surprised to learn how many friends or friends-of-friends had dealt with the disease. Some of it, of course, had to do with age and some of the men had other close family members who also had prostate cancer. Every one of them had a “story.” At first, Bill wasn’t ready to listen to what others had gone through…he was still digesting that he had prostate cancer. The disease was still in the “first person.”
After attending the US TOO meeting, this changed rather abruptly. Now, Bill wanted to know more of the details and to have first-hand recommendations about the men’s surgeons. He wanted the best; someone with plenty of experience, who was up on all the new techniques. Everything Bill had read underscored the importance of doing thorough research before selecting a surgeon. As the references pointed out, a man has only one shot at this operation — just one chance for a cure — so reviewing the surgeon’s credentials and experience is absolutely essential. Bill narrowed his search; he wanted a board certified urologist who performs this particular operation every day — or at least several days a week. He wanted a doctor who would discuss his rate of success in preserving potency and continence; a doctor who doesn’t leave any cancer behind. Finally, Bill wanted a surgeon who selected his surgical candidates so carefully that most of them didn’t need radiation or hormonal treatment after undergoing the surgery.
Bill narrowed his choice to two surgeons who met all his criteria for “excellence,” and finally selected the one who came highly recommended by both physicians and men on whom he had performed the surgery. The ”referring” patients were in his same age group as Bill, they were diagnosed early, and were generally in good health. They were both corporate types who had high standards for performance in all aspects of their lives, so a good recommendation from they carried extra weight. With the decision made, Bill scheduled an appointment for a pre-surgical consultation.
Going For the Gold…
The “gold standard” for curing the vast majority of men with cancer confined to the prostate is the radical prostatectomy. This surgery can also cure cases where the cancer has reached or even penetrated the prostate wall if the tumor cells are well differentiated (a Gleason score of 6 or less) and if the surgeon is able to cut out all the cancer (a clear surgical margin).
Bill was reassured that his surgeon of choice considered him an excellent surgical candidate, and a date was set for the operation the following month. While he was anxious to get this over and done with, the surgeon explained that he wanted to be sure that the tissue had healed from the needle biopsy he had earlier.
“Bill was clearly a man on a mission,” explained Anne. “He had attacked this like he did so many of his business challenges — he did painstaking research, the considered all the facts, he talked them over with me, and then made up his mind. He established a no-nonsense relationship with his surgeon, got his questions asked and answered, and then set about taking care of loose ends before checking into the hospital. His confidence was contagious,” she continued, “but I had just a moment of dizzying terror when Bill got the will out of the safe deposit box, and made sure it was up to date. I knew there was only a one or two percent chance of him dying during the operation, but I didn’t want to face even that small chance of losing him. Frankly, I think he was better prepared for the surgery than I was for him to have it.”
Bill had received a list of pre-op directions that included no aspirin (a noted blood thinner that can cause excessive bleeding in surgical situations) 10 days before the operation. He was encouraged to donate several units of his own blood ahead of time — which was another reason the surgery was set so far ahead. Bill and his surgeon agreed on an epidural anesthesia, which effectively numbs the surgical field and virtually all of the lower body, because it is administered continuously and can be adjusted if necessary, and it minimizes the risk for blood clots developing in the legs.
They had also agreed that the surgeon would use the “nerve sparing” procedure if the cancer was indeed small and confined to the prostate to leave behind one or both of the neurovascular bundles that lie on either side of the prostate. These are the nerves responsible for erection, but there is no way for the surgeon to know beforehand if they can be spared. Bill and Anne had agreed completely that the first priority was to get rid of all of the cancer, and then to preserve sexual function. Stoically, the couple simply decided they would deal with the potential for side effects one step at a time.
“P-Day” had finally arrived and Anne sat quietly by the bedside as they waited for Bill to be taken to the operating room. By this time, being “poked and prodded” was old hat and Bill had reluctantly suspended his former modesty. He felt that he was as mentally and physically prepared for the operation as he could be, and was calmly optimistic. A hurried kiss, a gentle squeeze of her hand, and Bill was wheeled down the sterile corridor by a flying wedge escort of his scrub-clad medical team. The conversation was upbeat and encouraging as they disappeared behind the OR’s double automatic doors.
The surgeon’s team kept Anne posted on the operation’s progress as she made herself as comfortable as possible in the busy waiting area. The pre- and post-operation instructions provided by his surgeon’s office were very comprehensive, and probably contained far more about the recovery period than either Bill or Anne really wanted to know. But it did prepare them for the drainage tubes from the surgical site that would be there for three to five days and the urinary catheter that had to remain in place for two or three weeks — until the area healed and to minimize the risk for incontinence in the future. This, clearly, would take some getting used to for a man who found it difficult to stay still for any period of time.
Bill had also been reassured that there were new medications to manage the pain, and was advised realistically about post-op activity limits and other recovery issues. All things considered, the couple agreed, they could “live” with the program for six weeks or so, knowing that it wasn’t going to last forever. Bill and Anne had also made a pact to keep the lines of communication open.
“We have always talked things over,” Anne explained. “Bill’s surgery, however, involved his ‘privates’ and conversation about body parts and bodily functions was somewhat alien to us. Oh, we’d get used to it, I suppose, but I was continuing to take my cue from Bill to find his comfort zone. My primary objective was to help him recover and to give him plenty of support and encouragement. The rest, I figured, would follow.”
The surgeon had good news. While the cancer turned out to be relatively close to the prostate wall, he had a clear surgical margin and was very confident that he had been able to get it all. Now, he said, Bill could concentrate on getting back to normal.
Anne knew it was entirely natural that Bill might experience some level of depression after surgery, especially while his activities were curtailed during recovery. She had met with the surgeon’s trained nursing staff and had prepared for her new role as caregiver. With Bill’s independent streak, however, they had decided on visiting home health services for the week following surgery to help Bill learn about and adjust to care of the catheter and urine collection. This would give Anne some much-needed time for her own responsibilities and would relieve Bill’s reluctance to have Anne waiting on him in such a personal way.
As it turned out, this was an excellent decision for both of them. Bill and Anne enjoyed some great quality time together as he was able to get up and around more and more comfortably. She resisted the urge to be with him all the time, and deliberately went out and did things just for her, like shopping, having a massage, and getting her hair done. They went to the movies, took walks, and completed countless jigsaw puzzles together. Actually, it was a bumper sticker that set the tone for Bill’s recovery period: “Don’t sweat the small stuff — and remember it’s ALL small stuff.”
Thanks to early discovery and excellent medical care, Bill and Anne could anticipate many good years together in the future. Bill would have to have regular PSA tests and annual physical exams in the years ahead, and he may require some medication or treatment for incontinence in the short term, but all indications were that the surgery was a success. They had met the enemy head on and so far, they had won. While neither of them would have chosen a bout with prostate cancer to bring them even closer together, they certainly enjoyed this net effect.
EDITOR’S NOTE: Anne and Bill are a “composite” couple. Their experiences in this article are drawn from those of real people who have faced the realities of this disease, and are supplemented by advice from health care professionals, as well.