Excerpt Chapter 4
Chapter 4 Excerpt (Continued):
If you go to the Partin Tables (statistical data forecasting the stage of cancer spread,) for people who had my 6.8 PSA and 7 Gleason score, there’s a seventy-five percent chance the cancer has already spread beyond the prostate gland. So, that means there’s only a twenty-five percent chance of getting out of this without having chronic cancer.
First thing I did was talk to friends to get ideas. I got hold of Dr. Patrick Walsh’s book on prostate cancer Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer and read it cover to cover. . And that was a very helpful book. I read other medical books. Everything that could get me up to speed . I went online and got sources on there for information really to figure out what was going on. I went to a support group over at Fairfax Hospital and heard different people in my same circumstances who did get rid of the cancer. And, some that did not get rid of the cancer.
Then suddenly Mac got more bad news. He found out that he was also prediabetic. “Diabetes is not something to mess around with either. And I went on a very strict no sugar diet—low carb diet, and I worked out every day and I was much more careful about what I ate. Within six months I had lowered my sugar, but it’s an ongoing thing I have to deal with—continually.
So after all this, I went to see some other urologists. Some were willing to do the surgery, but they all thought I was at risk and told me they thought my chances of a favorable outcome were already gone. At that point, I went to Walter Reed, having been in the military. The doctors at Walter Reed compared whatever they were doing to Johns Hopkins. Hopkins does this, Hopkins does that, and Hopkins gets results. It became obvious that they considered Johns Hopkins to be the gold standard when it came to prostate care. And that’s when I Imade the decision to go to Hopkins.
There, I met Dr. Arthur Burnett. He was the first to say I was a candidate for surgery. He does a ton of these operations. And he thought he could feel some clearance between the cancerous lumps of the prostate gland and the pelvic sidewall! So he judged that the cancerous lumps had not yet grown into the pelvic sidewall. If that was the case, Dr. Burnett explained, it would be an inoperative situation. I wanted a doctor who had a lot of experience. If a doctor doesn’t hook you up right, he can totally foul you up. You can have real problems with incontinence or rectal problems., I know several people this has happened to. These life and death issues are tough. You’re dealing with your own mortality which is a difficult thing for everyone to deal with. I had been waking up every day with the thought that I had cancer in me and it might affect me in a long-term way and shorten my life. I sensed Dr. Burnett’s confidence when he said he felt I had a chance. I need to hear that. That’s when I told him I’m ready to go for it.” Surgery was set for November 22, 2005.
Mac Ogilvie conveyed his decision to his HMO. They told him they would not pay for the Hopkins surgery. Instead, they recommended that Mac let them do radiation. He rejected their advice and made arrangements to proceed with the surgery. “I looked at it and thought, hey, I’m in trouble here because of them. I thought I had a little legal case here. Meantime, I decided to pay for the whole thing myself. It turned out to be a huge bill but I understood that from the get-go, so I didn’t have any qualms about it. It’s a lot of money, but I thought later I just might have a little talk with a lawyer.
My wife, Trudy, throughout was very supportive. We’ve been through some difficult times in the past. Before I had my cancer Trudy was afflicted with a virus that caused a condition called transverse myelitis. She became paralyzed below her waist and so was confined to a wheelchair. She’s now just beginning to walk again. But she’s been through an incredible ordeal, and I’ve been supportive of everything she needed. And ever since I got this cancer, she’s been totally supportive of me. We just felt our overall health issues were our paramount objectives. All the other things we were ready to work through. Before the surgery I said to Dr. Burnett, ‘My intention is to have you do everything you can do to get rid of the cancer. That’s number one. I would like to have the nerves spared, of course, but not if there is the slightest chance the cancer might spread. I mean I just wanted it gone.”
They Ogilvies waited until March 15 to get the news they were waiting and hoping for.Mac’s PSA registered 0.1, indicating that the cancer was no longer present. Dr. Burnett confirmed the success of the surgery. Surgical margins and lymph nodes negative.
“It’s now about four months since my operation. And I think the incontinence problem is pretty much over. I’m not sure I’m one hundred percent but it’s not a major issue. I do wear a small pad, but I’m not changing them several times a day anymore. As for the nerve bundles, Dr. Burnett felt if he did not take them, it could have resulted in retaining the cancer in me and he was with me on that—it was not even a chance he was willing to take. My family doctor says if you have a penis, you can have an erection. You’re not going to be able to do it on your own, but it can be done. Pills, like Viagra, don’t work for me, but I know there are other ways it can be done. Some are easier than others, and I’m going to look into those and we’ll see. It’s a factor, but not a huge factor. Not something totally distressing to me. I can deal with it. I’m utterly relieved that the cancer appears to be gone. Everything else is, I think, icing on the cake. And my wife’s and my relationship is not based one hundred percent on our sexual ability in that manner. There are so many other ways we share a closeness and emotions together.”
Mac Ogilive is a man who is quite philosophical about life. When he talks about his recent ordeal he likes to reflect on the lessons it has taught him. “You know, as men get older, they lose a certain level of their sexual potency and capability. And when you see what can potentially happen with radiation treatment for prostate cancer or radical surgery—with or without the loss of the nerve bundles—eventually you still lose potency. You know, my knees have aged and I can’t use my knees as well as I used to. Same thing with sexual function. You can lose it a little faster. I think I could reconcile that in my own mind. Other people may or may not.
I discovered that when I went to some of the support groups they were very helpful. You meet other people in the same exact situation and you become very close to them because you’re all really facing the same things. And your faith could also be a strength for you. It could be a source of comfort and reconciliation of your situation. I think the human mind and body is able to try coping with things. After you go through the period where you just feel bad for yourself—and all the different levels of grief for yourself—I think, in the long run, you are able to adjust and cope with your new situation. And I think that’s what life is all about…in a way. Adjusting to new situations. For whatever reason, I think I am very fortunate—lucky. I was one of those twenty-five percent who made it. I’ll be ever thankful and try to make the rest of my life worthwhile for having deserved to be free of cancer. I tell people if you ever see me not smiling, you have my permission to hit me on the side of the head because I ought to be smiling all the time.”
Perhaps no one’s love and encouragement sustains Mac Ogilvie in all he does and accomplishes more than his wife, Trudy. She is, he will tell you, his rock and the source of his inspirations. Trudy Ogilive works with fifth grade school children as a special-needs computer teacher. When he came home one day and told her he may have prostate cancer she was jolted. “He said he had to wait for a biopsy report to come back, but he added there was little doubt that he had it. Mac takes very good care of himself. He had a physical every year. We both tried over the past couple of years to eat better, change our habits. Exercise is very crucial now, so…it was a shock that this was not caught by his HMO doctors! His PSA would go to that level and nobody noticed it! Nobody caught it! Mac’s physician at their HMO, Dr. Gallagher, was the nicest of doctors. But Mac was so angry at him . He had had so much respect for him and yet he screwed up—and because of that Mac was facing cancer. Both of his parents died of cancer. So, this was a very real threat. It was devastating. It was because of you, Dr. Gallagher…you screwed up…my whole life is changed forever!
We have four children. The oldest is thirty-three and the youngest twenty-three and we’re all very close. At first, I didn’t want to tell them about Mac because they were scattered all over the country and I knew it was going to be devastating for them. But we always made a promise after what had happened to me, when I got transverse myelitis, that we would never, never keep anything from one another never, never! That was our promise. Our family had been through so much with me…and very, very supportive. So,now this. My heart just broke for Mac. I just started praying. I’m a Catholic and raised Irish Catholic. And my faith has got me through many, many things. That’s where I go! That’s my end. I just prayed. Every day. I believe we’re here for a reason and it’s for each other. And Mac got me through it all with his sense of humor. With his joking around. He can take a really delicate situation and make me laugh.
Communication is crucial at a time like this. You have to have someone to talk to. You have to sort of vent. I have very close friends, but it was sort of between Mac and me. I mean we spoke about what was going to be happening and all, but I didn’t really get into the gravity of it all. I had to deal with it with my kids first. You know, they were devastated and I felt like a walking sob story. So we kept it between us. Our relationship just got stronger. All of a sudden we realized what was important in our lives. We just want to enjoy life. We want to enjoy our kids. We want to enjoy people. Things don’t mean anything. Your faith in God and a belief that you’re loved, I think, is the most important thing that life has to offer you. It makes you open up more to other people much easier. You’re not afraid. Here I am! This is me! When you’re in your thirties and forties, you want to be liked. You want this, you want that. When you’re in your fifties and sixties, you just want your Mac by your side for the rest of your life! We do have so much fun together.”
Malcolm Ogilvie made good on his promise to visit his lawyer. He drafted a letter of complaint to his HMO and within two weeks received notice that they had reversed their decision. He says the letter that ended with, “Your referral is approved,” made his day. When last contacted, he was in the process of collecting $19,000 from his HMO.
THE DOCTOR’S NOTEBOOK
This is an extremely touching story. Malcolm “Mac” Ogilvie and his wife, Trudy, had presented to me in a state of hopelessness and despair because of his prostate cancer diagnosis. Additionally, I could sense their anger as they were told they had a situation that had progressed despite his good health maintenance activities. Nevertheless, we were determined in moving forward with the radical prostatectomy, and ultimately he had a success story. His epiphany is that he should be “smiling all the time” because of his positive outcome. This perception actually shows Mac’s upbeat spirit despite having gone through his ordeal. His account reveals how much anxiety and emotional upheaval this disease can produce.
In my encounter with the Ogilvie’s, my own sense of anxiety also was elevated. I too was disappointed that Mac’s clinical condition had progressed in such a way that his very best outcome, disease eradication with preservation of functional abilities to the fullest extent, might be compromised. Our interconnection was direct and honest as we both understood the gravity of his situation. Also, I had some deep concern about how likely we were to beat the odds. The extent of his local disease was unclear and therefore very disconcerting. How much intrusion had the cancer made beyond the prostate capsule? This admission of angst from my perspective reflects how much we physicians may agonize over achieving the very best results for our patients. In the final analysis, I reasoned that the odds in Mac Ogilvie’s situation were somewhat unfavorable. Yet as I examined his case, I came to the conclusion that because of my training and experience, he had a chance. And so we proceeded. The outcome, happily, was quite positive, and I am smiling with him.
There are some additional insights gained from Mac Ogilvie’s story. Indeed, his case demonstrates a late diagnosis. This situation can occur, but it is avoidable. It is known that prostate cancer kills, and great responsibility should be borne by all involved, including patients themselves, in coming to grips with this fact and in taking a leading role in their own care. It is a tribute to both Mac and Trudy Ogilvie that they were persistent in his management. He was not prepared to accept anything less than a reasonable attempt to be successful. An additional observation associated with this energy is his wife’s extremely supportive stance. A physician should never forget that we learn much from our patients about life’s lessons. Experiences such as this are gratifying for me while they also reaffirm my purpose in becoming a physician.