RICHARD: I think most of us are in no shape to make treatment choices when we hear our diagnosis. Most of our patients are in no shape to make choices either.

When you go to the multidisciplinary clinic and hear the radiation oncologist, the medical oncologist and the urologist, you’re just like a patient. You are overwhelmed. You become almost amnesic hearing all that information. I think it takes time.

I’d like to think I was perfectly aware of the power of words before this experience, but after my diagnosis I became a lot more aware and realized how powerful words can be. Sometimes even casual comments can be devastating, insulting or demoralizing without being intended that way.

I was told by a well-known urologic oncologist who went through the spiel about conventional radical prostatectomy, “You will have a good chance of retaining your sexual function but of course, you’ll be shooting blanks.” I knew at some intellectual level what he was talking about, but his words added to the overall misery of the experience.

We really have to be careful how we talk to people — the words we use and how we use them — because the message is different when you’re receiving it at a visceral level.

DR MAGRINAT: My reaction to the diagnosis was different than what I heard today. I was almost relieved to have a prostatectomy because I had been thinking for years that I was going to develop the disease.

What really worried me were perhaps silly things: Should I tell my patients or not? Are people going to think differently about me because I have cancer? Are other doctors going to stop thinking of me as an invulnerable omniscient physician?

I decided to be very open. I told everyone everything from day one. I was surprised by my patients’ reactions. They were so supportive, kind, caring and worried about me. I don’t notice any change in the way my partners or colleagues treat me. They still overwhelm me with more patients than I want to see!

DR LAWTON: Because I am a woman, many of my patients say, “What could you possibly understand about what I’m going through?” I think telling patients about my dad’s diagnosis — which he gave me permission to do — really helped me with prostate cancer patients in my practice.

My patients have been amazingly supportive and many ask me, “Oh, by the way, how’s your dad?” My dad has had a PSA recurrence and even when I tell them he’s doing fine, they say, “Is he doing okay? Are you okay?” They’re amazing.

DR FAGAN: I’m retired now and have been for a number of years, but I do a lot of consultations in the post office, grocery store and on the street corner. People come to me for information and guidance. Most of them know me and know that I had cancer. It’s important to outline all the possibilities for people and tell them it’s not necessarily the end of the world.

I was in total denial when I was diagnosed and for a long time afterward. I had a wonderful medical advocate — my wife. She’s the one who pushed me to do the things that I needed to do because I really couldn’t make the decisions myself.

I saw an oncologist who said to me, “If you were 50, we’d probably treat you a little more radically.” Then, my wife said to him, “Look doctor, you’re 50 years old. You could walk out on the street and get killed by a car, and my husband could live for 20 years.” Eventually, I ended up with another oncologist who is treating me with experimental drugs, and I am very happy.

DR MOUL: One of the things that we, as urologists, have been criticized for in the past was being too aggressive in older individuals. How do we balance the issue of not practicing age discrimination versus over-treating a lot of patients? I think we probably need to be embracing watchful waiting a lot more for our patients with lower-risk disease; yet, it’s not very popular. I was just wondering if any of the physicians here even considered watchful waiting.

DR DEETHS: I had a low-stage, low-grade cancer. As a surgeon, I didn’t feel that watchful waiting was an option. This was seven years ago and at that time, PSAs and surgery were somewhat different than they are today.

I’ve always told my patients that prostate cancer is like having arthritis or cardiovascular disease; it’s a longterm situation for the majority of men. If you have arthritis or heart disease, you treat it with medications and develop different treatment programs. I admit, it’s hard to do that for yourself.

DR SCHELLHAMMER: I think the point that urgency is not a critical issue in prostate cancer treatment needs to be emphasized to patients, and they need to obtain other opinions. The most unhappy patients are those who propel themselves into a treatment straightaway, because they think that it has to be started sooner rather than later.

Heart disease is often more lethal than a diagnosis of prostate cancer; however, after a cardiac event, the idea is that you are going to partner with your organ to have a better lifestyle — exercise, and together go forward as a unified team. With cancer, there is a sense of betrayal, and treatment is an effort to rid yourself of the invader.

Having experienced both, I would say that the gut reaction with cancer, although I certainly know better factually, was much more powerful than the aftermath of the myocardial infarction.

Maybe it’s one event that happens and then you begin to recover; whereas, the cancer is a process and a journey that you have to move into. Cancer is the big “C,” and that term or label still carries a lot of power. I don’t know whether it’s an American cultural bias — it would be interesting to hear a similar discussion in France or Norway.

DR LONG: I’m in private practice in an area that is socioeconomically unsophisticated, and I see a lot of prostate cancer. It’s almost epidemic in the area. Whenever I perform a prostate biopsy, I schedule a consultation with the patient three to five days later to talk to him face-to-face about the result, whether it’s positive or negative.

Patients have plenty of time with me and I think it’s very helpful. The other thing I notice is that for some reason, women seem to handle these situations better than men. I strongly encourage patients to bring their wives or daughters.

DR LANGE: I thought about the watch and wait concept — should I do nothing — because I had one millimeter, Gleason 5 prostate cancer. I considered different ideas but I wanted to know what was in there. I felt young then, but since this experience I have become more sensitive to brushing off the 70- or 75-year-old patient by saying, “Oh, well, you’re too old.”

Echoing Paul’s comment, you don’t form a loving relationship with your prostate cancer as you might with your heart or your aortic aneurysm, so it’s difficult to know what to do. If I see a man who’s older, I first find out about his past history and encounters with his own mortality.

If he’s had a big MI or whatever, watch and wait could be much more of a reasonable option. If he has never been sick a day in his life and you tell him he’s supposed to watch his prostate cancer, that isn’t going to play in Peoria. You have to individualize the treatment for the patient.

Ultimately, I think the answer to Judd’s question is a difficult one because once you know that you have cancer it becomes very hard to contend with, no matter what your age.

DR LOVE: I’d like to explore this more. I’ll make the argument that you’re going to influence the mortality of a man with Gleason 6 prostate cancer, who is 40 pounds overweight, more by doing stomach stapling than by doing a prostatectomy.

DR MAGRINAT: In my practice, for a woman with a three-centimeter breast tumor and one positive lymph node, the discussion takes 35 minutes, whereas with DCIS, it can take up to an hour and a half to convince a woman that maybe it’s just a pre-cancer. In fact, I used to say, “This is not a cancer.” Then that got very confusing. The patients would say, “Well, do I or don’t I have cancer?”

I don’t do that anymore. Now, I say, “You have cancer, but it is very early. It’s not life threatening, to the best of our ability to tell, and you are going to do fine, no matter what.” That discussion takes an hour and a half, whereas deciding how to treat a much more dangerous tumor takes very little time.

DR SHIMM: Sometimes prostate cancer therapy seems to follow the old saying, “When the only tool in your box is a hammer, all your problems start to look like nails.” The urologists recommend surgery, and the radiation oncologists recommend radiation. The initial multidisciplinary team should include a medical oncology consultation. The medical oncologist can act as an honest broker who really doesn’t have a vested interest in treatment one way or another, and can advise patients without pushing them. One of the problems is reimbursement. The time you have to spend with a patient is not reimbursed.

DR LOVE: I think the issue of where the medical oncologist fits in prostate cancer management is very important, particularly for patients with biochemical relapse. It’s the only situation I can think of in cancer medicine in which oncologists get involved with systemic antitumor therapy at such a late point in time.

RICHARD: One more comment about watch and wait: It’s really a burdensome strategy for the patient.

When you look at the nuts and bolts — the periodic biopsies, frequent PSAs and mulling over what they mean and what your wife is experiencing as you harbor the enemy within the gates — it is difficult. I heard from a radiation oncology colleague that very few of the large group of patients that he watches end up continuing to watch and wait. And it is usually the wife who “pulls the plug” on it, because the anxiety is simply too much to bear. It’s one thing to think about it, but it’s another thing to harbor it yourself.

DR LAWTON: It makes me sad to think that if we have a hammer as a physician, then we think of everything as a nail. I try to tell patients when I see them, “If your surgeon says the only option is surgery and you have lowrisk prostate cancer, you need another surgeon. If the radiation oncologist says the only option is seeds, you need another radiation oncologist.”

The bottom line is that patients ought to be seeing at least two consultants. If anyone says you need treatment right away, you also need another physician, because the business of prostate cancer is huge in our country.

Sadly, we haven’t done enough to say, “Stop it. Don’t scare the life out of these patients.” Instead we should be telling patients who want surgery or seeds tomorrow, to take a deep breath and ask, “Did you consider all the options?” Then, we should suggest a minimum of two consultants: a urologist, a radiation oncologist and maybe a medical oncologist to consider watchful waiting or hormones alone, which would be appropriate for some patients.

Finally, after they’ve got that information, they should allow themselves and their spouses or significant others a minimum of two weeks to consider these options before actually acting on it.

DR LANGE: While we’re admonishing ourselves, I think we should all remember that we have done a very poor job developing the culture and discipline to do the randomized trials that need to be done. As you know, we failed at SPIRIT.

DR LOVE: Could you review the SPIRIT experience for us?

DR LANGE: SPIRIT was a randomized trial for patients with low-risk prostate cancer comparing seeds and radical prostatectomy. The study was abandoned because of poor accrual. The reasons it wasn’t initially successful are multiple and mostly not very not complimentary to the field; however, one of the things that should come out of this meeting is a resolve that we need to do a better job at clinical trial participation, as in many of the other types of cancer, and not be so entrepreneurial about all this.

DR STUTZMAN: When I was at Hopkins, I saw patients come in from coast to coast, and some of them already had a half a dozen expert opinions. I used to tell them, “You can see six experts and get half a dozen expert opinions. They all may be right, but you have to decide.” I told them my experience and what I would have done in their case, but some of these patients were still confused after talking to all those experts. How do you get them to decide what to do?

DR LONG: When I talk to patients with an initial diagnosis, I give them all the options. Then I give them my recommendation because they can get very confused and most of the time there’s a little bit of a negotiation.

Some patients don’t have transportation to drive 30 miles for radiotherapy. These kinds of things you can negotiate. I think it’s important to give them all the options and then give your best recommendation for that patient.

DR MOUL: Urology is a mixture of surgical and medical therapy. I think we’re very proud of the care we give to prostate cancer patients, but problems exist. In the past, financial pressures kept us from referring patients, but that’s changing as a result of multidisciplinary programs.

We had a good program at Walter Reed when I was there. The problem, in the real world, is that my colleagues complain that if they spend their time in a multidisciplinary clinic; they can’t generate the revenue they could in a regular clinic. That’s a fact of modern practice, even though the vast majority of urologists believe, philosophically, that the multidisciplinary clinics are the right thing for patients with early-stage prostate cancer.

Some urologists have voiced concern that they want to send patients to radiation oncologists, but that radiation oncologists always give radiation, bash surgery and don’t talk about watchful waiting. I know that’s not true in all cases, but it needs to be addressed.

DR SCHELLHAMMER: It doesn’t matter who gives the therapy, as long as the patient receives it appropriately. I think it’s going to be interesting in the next several years as a number of noncytotoxic biologic agents come to the forefront that do not cause leukopenia and hematologic difficulties. Who will be prescribing them — urologists or medical oncologists?