Please Read This Before You Go Under the Knife. Nobody thinks a prostatectomy will be a breeze; if anybody tells you that, take it with a big old mental grain of salt. Even with the best surgeon in the world, there will still be some incontinence and erectile dysfunction. But ideally, with exercises, biofeedback if necessary, and penile rehabilitation, these should be temporary, and you will be cancer-free and enjoying your life again soon.
The complications from prostatectomy ought to be minimal. But often, they are devastating. A bad surgeon can ruin your life.
So please hear this advice and take it to heart: Find the best surgeon you can. Get it done right.
Radical prostatectomy is a very difficult operation. It takes not only skill, but the kind of expertise you get only after being involved in a lot of procedures, first from the sidelines as a doctor in training, and then learning how to do it meticulously with the guidance of an expert surgeon.
The very best prostate surgeons specialize in the prostate. That’s often all they do, and they do a lot of these procedures every year. As Patrick Walsh and I said in the book, you don’t want to be part of the learning curve.
Another point: Because there are so many bad surgeons out there, you can’t trust everything you read on the internet or from hospitals’ propaganda.
I would dearly love to weed out the bad surgeons, so they stop doing procedures they aren’t skilled enough to do. Until that happens, well, this is your one shot at this. Do your due diligence. How can you find the right surgeon? Here’s a checklist I developed and wrote about for the Prostate Cancer Foundation’s website, with the help of three experts. Please. Take the following things into consideration before you go under the knife:
- Find a high-volume center that does a lot of these procedures. Often, this is an academic medical center. An added benefit here is that if they do a lot of these, and do them well, then everyone is going to be better at helping you. The nurses know how to take care of recovering prostatectomy patients, and there is a wing or set of beds just for those men – and not also appendectomy or hysterectomy patients, whose post-op needs are very different. How do you find a high-volume center? Edward Schaeffer, M.D., Ph.D., Chairman of Urology at Northwestern University, says, “This can be hard, but I always refer patients to two websites that can help.” One is the National Cancer Institute’s website, which designates “cutting-edge cancer treatments to patients in communities across the United States.” http://www.cancer.gov/research/nci-role/cancer-centers/find And the other is a website showing National Comprehensive Cancer Network-designated cancer centers. “NCCN Member Institutions pioneered the concept of the multidisciplinary team approach to patient care and lead the fight against cancer as they integrate programs in patient care, research, and education.” NCCN writes the guidelines for how to screen and care for all types of cancers, including prostate cancer. That website is: https://www.nccn.org/patients/about/member_institutions/qualities.aspx
- Look for a place where different specialties work together. Top centers have multidisciplinary teams – experts from different specialties including urology, radiation oncology, medical oncology, and pathology – working together on prostate cancer. Some men are perfect candidates for surgery; others might do better with radiation, and if you are one of those, you need at least to speak with a radiation oncologist before you decide on surgery. Other men need to talk to a medical oncologist, as well. Prostate cancer is a complicated thing, and there is no “one-size-fits-all” answer for every patient. With the multidisciplinary approach, you get the opinion of a team of experts, not just one, and the benefit is a more thorough and thoughtful approach to your treatment.
- Ask the surgeon about results: Does he or she keep results? For how many years? The best surgeons, like Patrick Walsh at Johns Hopkins, follow their patients for life – so they know, 25 years after the fact, whether the PSA is still undetectable, whether there was any incontinence, whether erections returned on their own or with help from medications or other treatments, etc.
- Then double-check. “To be honest, in my experience some surgeons lie,” says urologic oncologist Trinity Bivalacqua, M.D., Ph.D., at Johns Hopkins, “and it’s hard to determine when someone is not being truthful. The most important factor is the reputation of the institution and the department, as well as the surgeon. One thing that helps is asking the surgeon to provide you with names of his or her patients who have agreed to speak to other patients about their experience. This is very helpful, and will show that the surgeon has happy patients, cares enough to put this together, and knows the importance of a large support network to help a cancer patient decide what’s best for him.”
- Are any of the surgeon’s patients willing to talk to you? You can hear it from the “horse’s mouth” what recovery was really like.
- How many radical prostatectomies has the surgeon done? The answer should be in the hundreds. If it’s something like “several,” do not walk away – run!
- Ask more than one doctor to recommend the best prostate surgeon in your area. (Note: Some doctors are in practice groups, and recommend the specialist in that group. This is why it’s good to ask different doctors in different practices.)
- Beware of the reviews or ads on the internet. “It is unclear to me who actually goes to these sites and makes the comments,” says Schaeffer. Maybe it’s the patients; maybe it’s a buddy of the doctor putting in a rave review to get the number of five-star listings up. Or maybe it’s a disgruntled colleague, or a competitor hoping to drive business away from that surgeon. Who knows? For the most part, says urologist Stacy Loeb, M.D., M.Sc., at New York University, “Online reviews are totally unreliable, so I am hesitant to tell men to rely on them.” Research has shown poor correlations between online reviews with outcomes, she adds, “so I am wary to recommend something that could be misinformative. Speaking to other patients and local doctors is a much better idea.” Loeb also recommends that you check with prostate cancer support groups in your area, and ask these men about their own experience and advice on a surgeon. “The internet is full of false accusations and glamorization of surgeons and the hospital or department,” says Bivalacqua. A lot of hospital websites, he adds, “advertise something that is often not present or real. I know this is a sinister way of thinking about things, but it’s the reality of our society and medical profession.”
- And finally, don’t worry about offending the doctor with questions or by getting a second opinion. You don’t get to be a surgeon without being something of a tough cookie. People ask for second opinions all the time. Patients ask questions all the time. You are paying the doctor, not the other way around. (Note: That doesn’t mean you should be rude or disrespectful; it just means you shouldn’t feel intimidated or like you are being a bad guy simply for doing your homework.) If the situation were reversed, do you think your doctor would not make every effort to find the best possible surgeon? It’s your prostate, it’s your recovery, it’s your life. You don’t want to be one of those guys saying afterward, “My surgeon was not very good.”
In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.
©Janet Farrar Worthington