Palo Alto Medical Foundation Prostate Cancer Buddy Program– Watch….but watch with a “grain of salt.”
I have not watched this assortment of videos. Here is what I’d tell you as a patient and as a urologist about this if you choose to watch. People in general and patients in general tend to “romance” their treatment choice, particularly if they happen to do well.——Well, I watched Part I and thought it was very good. I feel they downplayed the potential for side effects of radiation and played up the ease of it. On whole..I liked it because it spoke to the emotional and mental side that the diagnosis evokes. I relived a few emotions while watching. I love that different people choose different therapies and they did not villainize the medical community. And of course the quote,” the side effect of living” that was poignant. Note how many times “the decision” is mentioned….that’s the issue not books on unnecessary this or radical life changing treatment that…..I liked it and am going to send Palo Alto some of my books tomorrow.
From “The Decision”
It goes without saying that an important and vital aspect of your journey is to share your situation with friends and loved ones. As we have discussed, their input will be important in helping you make your decision. The focus of what I want to discuss with you now, however, is how you choose to help others now that you are an expert and have “been there, done that.” What most patients tell others who have been newly diagnosed depends a lot on how they did with the treatment they chose.
Patients who do well and have a good result tend to take ownership and pride in their decision, the method of treatment they chose, and the doctor who did it. In this case, when this patient learns of a friend who has been recently diagnosed, he will usually search him out and most likely advise him to do what he did. I’m not sure from where this particular attitude originates; it is almost as if having had a good result by a certain physician reflects well on the patient’s decision making. Imagine in your mind’s eye, the patient with a puffed up chest saying to the newly diagnosed patient, “I chose to do this, and I used so and so, and he was wonderful. I am doing great.” I, as the physician, have benefited from this type of “advertising” and am very much aware of the need to “re-educate” the new patient of all the pitfalls of the various treatments. I make it clear that if another patient did well with surgery, it doesn’t mean that he will or that it is the best and most appropriate method for him. This is analogous to the chance of flipping a coin and getting heads three times in a row. The odds of getting three heads in row are very low, but the odds of a head on the last flip are the same as each of the other flips: 50-50. In other words, you will have the same initial risk as your friend; the fact he did well does not improve the chances that you will. All the potential risks begin anew when it is you undergoing the procedure, regardless of who is doing the procedure or how your friend did.
In the opposite situation, you have the patient who chooses a well- thought-out treatment plan and has a bad result. This patient is often hard on himself for making a decision that resulted in having a particular complication and begins to wish he’d done something different. “I’d have never done it this way if I had known this was going to happen,” is something I hear often. I do believe I hear this more often from patients who elected to have radiation than from those who have had surgery. I am not being critical of radiation; I believe this is because patients understand the risks associated with surgery, but don’t fully comprehend how radiation affects voiding, sexual function, or the potential for issues down the road. Unhappy patients tell others not to do what they have done. There is a saying that “a happy patient will tell 20 people, an unhappy patient will tell a hundred.” The unhappy situation and the patient’s retelling of it do not tell the whole story either, and this is not fair to the treating physician or helpful to the newly diagnosed patient. The bad result is reported without attention to all of the other issues previously discussed, and, of course, don’t forget the luck factor.
So how should you help others? First of all, become an advocate for early detection. Tell your friends to be sure to have a rectal exam with a PSA each year starting around age 40. Some may tell you that 40 is too young. It is uncommon to have prostate cancer at that age, but it does happen. There is also a benefit to having a history of PSA trends over time, which will help the urologist in evaluating the need for a biopsy. The increase in my PSA over time is what prompted me to have a biopsy. If you want to share your experiences with the treatment you chose with a newly diagnosed patient, feel free to tell him your story, but for the reasons I have delineated, don’t advise them on what to do. Explain that the options are complicated and the risks varied, and that what was best for you may not be the best for them. Encourage them to work through the “who are you” scenarios, the specifics of their disease, and seek the counsel of their physician.
Your story becomes part of their database of what they could do, not the template for what they should do.
Determining who you are, what is important to you, and where you are in life, as well the specifics of your cancer, all play a role in arriving at your decision. Use your family physician, urologist, or radiation therapist to help sort through all you have gleaned from research, friends, family, and your own soul searching. Ultimately the decision will be a culmination of your assessment of this knowledge in the context of what is important to you and your particular situation. In time, as I did, you’ll arrive at a decision that just feels right for you, a “gut feeling” so to speak. Then just go with it, don’t look back, and hopefully the stars will be aligned for you. I hope that my journey, told through an eclectic mix of medical and personal experience, stories, and humor, will be of help to you in your journey to “the decision.”
You have to do and decide what is best and what is peculiar to you and your disease. Let me ask you this…..do you know your disease? Hmmmmmmmmmmmmmmmmmmmmmmmmm.