Many Patients Suffer Post-Prostate Cancer Surgery
NEAL CONAN, host: This is TALK OF THE NATION. I'm Neal Conan in Washington. And we want to warn those of you with children in earshot that we're going to conduct an adult conversation about treatment for prostate cancer that will include frank discussion of bodily functions.
Every year, more than 240,000 men get the sobering diagnosis of prostate cancer. Then many get good news. Treatment is both effective and safe. In fact, they're told over 90 percent enjoy a normal sex life afterwards. New research confirms what too many patients already knew: After surgery and radiation treatment, for many sex will never be normal.
A study published in the Journal of the American Medical Association found that for those who reported good sex lives before cancer, fewer than half could achieve normal erections two years afterwards. The study also shows how doctors can better predict the outcome by using a variety of factors, including a patient's age, the extent of his cancer, and the type of treatment.
Prostate patients, call and tell us about your life after treatment. Our phone number is 800-989-8255. Email firstname.lastname@example.org. You can also join the conversation at our website - that's at npr.org - and click on TALK OF THE NATION. Later in the program, we'll talk with TV journalist Angela Kocherga about her experience covering the border drug wars.
But first, life after prostate cancer treatment. Tara Parker-Pope is the editor of the Well blog at the New York Times. She's written several pieces about prostate cancer treatment and joins us now from a studio in Philadelphia. Nice to have you back.
TARA PARKER-POPE: Thanks for having me.
CONAN: And you wrote in one of your pieces: Open discussion of sobering statistics is rare, partly because doctors worry that a man might decide to forego treatment rather than risk his sex life.
PARKER-POPE: It's true, and I think that what happens, though, the consequence of that is that men are really surprised and depressed and shocked by what happens after treatment. And you know, I think it's time that the medical establishment started treating men as grown-ups, and giving them the option to have all the information.
And what men say consistently on my blog and, you know, in emails is that, if I had known what to expect, it just would have been easier. I probably would have made the same decision, but I feel like I should have at least been told what my life was going to be like in the next couple years.
CONAN: And Tara Parker-Pope, the decision, of course, it's not just about your sex life, it's about your life.
PARKER-POPE: Well, it is your whole life. I mean, there is a recovery process to being treated for prostate cancer. Some men have incontinence issues after prostate cancer. But I also think part of the issue here is that we tend to act as if a normal, healthy sex life is not really an important factor in a person's overall health and well-being.
And you hear this a lot, particularly from women, I must say. They say: Oh, I just want my husband to survive. I just want him alive. It doesn't really matter. But it does matter. I mean, people need to feel like, you know, a whole, you know, functioning human being. And I think that we saw this with women and breast cancer, in that women were being given radical mastectomies at just a crazy rate.
And women said no, this is not acceptable. Our breasts are important. And there was a lot of research and interest in doing less invasive treatment for those women. And this is a very similar issue, I think.
CONAN: Similar yet - and similar because the, well, the prognosis for breast cancer is more dire than for prostate cancer.
PARKER-POPE: Not always. It depends on - you know, if you're diagnosed at the early stages, women have a very good outcome. But there was certainly a time when women were given a mastectomy without any other consideration for what their personal situation was.
And I think the same is true with prostate cancer. You know, there are certainly men who should be treated, and I think that's just - you know, that is a very thorny discussion with prostate cancer because we really don't know all the time if the men that are being treated should be treated.
You know, there are certain cases that are obvious that the men should be treated, and there's even cases where it's pretty - it's a pretty easy decision not to treat. But there's a whole lot of men in the middle, and those men have the most difficult choices.
And I think those are the men who often aren't given all the information because, you know, prostate cancer is a business as well, and there are people - doctors and radiation centers - competing for their business. And it's - it can often be very difficult for a man to get - you know - really, a clear picture of what his options are and what he should do.
CONAN: You wrote about one of them, Paul Nelson(ph) of New Canaan, Connecticut. Tell us about him.
PARKER-POPE: You'll have to remind me: Is he the wine - he's, no, tell me about Paul Nelson.
CONAN: He was - learned he had prostate cancer at the age of 46 and opted for robotic prostotectomy - I don't know if I'm pronouncing that correctly - with a famous New York surgeon who played down the worries of erectile dysfunction.
PARKER-POPE: Yeah, I'm sorry. I've talked to so many men about this since the story. I just - there's so many that have stories to tell. And what's interesting about Paul Nelson is that he - you know, he sat down with a doctor, a very respected surgeon, who gave him very promising statistics: 98 percent of men do fine after surgery.
And he went in and had surgery, and he wasn't fine. He had erectile function problems after surgery, as the majority of men will have, and when he tried to talk to his surgeon about it, you know, the response was: Well, you must just have something. You know, it's an anxiety issue. You've got your own set of problems. And he was kind of abandoned by this surgeon.
He decided to start, you know, basically a support group for men to talk about these issues because, as he discovered, that most men - there were more men like him than those that the doctor was talking about, that 98 percent success rate - which when you really get behind the numbers, what you learn is that that's a very specific, select group of patients under a very sort of specific set of circumstances.
And while that is real - those are real data, those aren't data that apply to the average man who's diagnosed with prostate cancer.
CONAN: Well, we want to hear from those of you who have undergone treatment for prostate cancer, and talk about what your life has been afterwards. Give us a call, 800-989-8255. Email us, email@example.com. But first, we'll talk with Dr. Jason Engel, director of urologic robotic surgery at George Washington University Hospital here in Washington. And he joins us here in Studio 3A. Nice to have you with us today.
Dr. JASON ENGEL: Nice to be here.
CONAN: And you're a prostate cancer surgeon. What do you tell your patients?
ENGEL: I'm almost ashamed to say I'm a prostate cancer surgeon after that. It sounds like I'm one of the bad guys. But I do agree with Tara in the sense that those interactions with the surgeon and the patient, they're very different - it's a different interaction based on each - different situation.
My approach, I think, has been different than probably many of the patients that have called Tara and told them her story, in the sense that the recent article in JAMA that came out, that outlined some of the outcomes and woke people up as to the reality after prostate cancer treatments in general, are things that I have been telling my patients for years, really.
CONAN: So this is not really news, what was in JAMA.
ENGEL: It's not really news to the majority of urologists. And I would say that we have to really differentiate between the urologist that takes the approach of saying, I'm going to be the one following you later, I'm going to be the one helping you later and looking you in the face later and helping you through this time; from places, maybe larger centers, that have a different model, where patients are going to travel to them, not necessarily see them again. And the patient also is looking for a different thing from that surgeon. They're expecting better outcomes, in a large part.
So although I agree with Tara, with much of what she's saying, it's not fully one-sided in the sense that although certainly this is a business, and under certain circumstances maybe they're worried about losing a patient if they're honest about what they're going to go through afterwards, sometimes it's the patient, also, that's seeking that type of advice, or looking for that certain center where they have that level of confidence in them such that they receive that answer - or perceive that answer.
CONAN: So there are large facilities that do these surgeries a lot, and those are the places that are often recommended, and somebody might travel to New York City, for example, and get the surgery there.
ENGEL: Yeah, and I think that has a lot to do with Tara's experience. You know, what I do - you asked me about my approach. I have a different approach. I will generally counsel the patient and his partner for well over an hour, sometimes two hours. I won't operate on anybody where the partner's not present.
And I make it very clear that erectile dysfunction is not going to be something that might happen to you. Regardless of whether you have radiation or surgery, it's something that is going to be part of the recovery of this, and it's all about management of expectation.
CONAN: Let's see if we can get a caller in on the conversation, and let's go to Ray(ph), Ray's on the line with us from Eagle River in Wisconsin.
CONAN: Hi, Ray, you're on the air, go ahead, please.
RAY: Yes, I had another - I had prostate cancer. I had a 10.55 PSA, which is dangerously high. I had three choices: I could get the radiation, I could have it cut out, or I could have my prostate frozen. That's called cryotherapy. It's a therapy that's been out for at least five-plus years. It's been very successful, very little side effects biophysically, in relation to a lot of other things.
But yes, my sex life did change. I was fully informed of the odds of me having a functional physical relationship afterwards, the variations, because of my PSA, the degree on the operation and how it was performed. So my surgeon was very good and very honest with me.
And my fiancee was sitting in with us all the time. He wanted it – he approached this on a partnership level. I felt he looked at the whole gamut of my feelings and everything else. He didn't guarantee anything except the fact that I would have a good chance of not having the prostate cancer spread and - even though it was that serious.
And so, yeah, he treated me very, very, extremely well. He was very informational, and he was very honest. Not once did I feel like I was being railroaded, or I wasn't given good information. It was an amazing experience to me and actually, it's a miracle because I've had three check-ups now, my PSA is very low, extremely low, miracle-ly low, and I have other things I can do in life.
But yeah, I am dealing with some of these sexual things and stuff - who wouldn't? - the physical and the mental here and there. But I'm 60. You know, I have a chance to live for another 10, 20 years, possibly, and there's other things in life. So - but I do understand how this would affect people more and more in different ways and etc., etc., but each person has to look at what's important to them, and only they can make that decision.
RAY: All in all - but all in all, the treatment, the honesty, the surgeon I had, it's a miracle I had this person.
CONAN: Tara Parker-Pope, if more people got the information that Ray got, they would not be surprised and disappointed, even crushed by what happens afterwards.
PARKER-POPE: Well, I think it's a really good example of what we're talking about, that this really is an issue of communication. And I don't want to give anybody the impression that I think these surgeons are bad people. I mean, 33,000 men die each year of prostate cancer. You know, it's a serious disease, and these surgeons do save lives, certainly.
It's an issue of communication. It's an issue of how practices are set up. Often a surgeon - it's not like Dr. Engel's practice, where he sees the patient after the surgery. Some of these patients see their surgeon for 15 or 20 minutes - and that's it; that is truly it. They move on after the surgery and see somebody else.
So I think this is an issue of communication. I mean, there are data showing that most men are happy with their choice. But there are a large percentage of men who just wish they'd had more information.
CONAN: We're talking about the reality of life after prostate surgery. Prostate patients, call and tell us about your life after treatment, 800-989-8255. Email us, firstname.lastname@example.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. For years, many men with prostate cancer heard similar stories from surgeons: Treatment is possible; risks and side effects are few. Research published last month shows that too often, doctors gloss over the likelihood of side effects, including sexual dysfunction and incontinence.
Many patients say they would make the same decisions about surgery but would have been better prepared had they known that a high percentage of men suffer side effects. So prostate patients, call and tell us about your life after treatment, 800-989-8255. Email email@example.com. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Our guests are Tara Parker-Pope, she edits the New York Times' Well blog, and wrote two pieces for the paper on life after prostate surgery. You can find links to those at npr.org. Again, just click on TALK OF THE NATION. Also with us, Dr. Jason Engel, clinical associate professor, and director of urologic robotic surgery, at George Washington University Hospital.
And Dr. Engel, I wanted to ask you: The predicting effect, with the patient's age, if you factor that in, the type of cancer that they have - according to the JAMA article, you can predict much more accurately what their experience afterward is going to be like.
ENGEL: Yeah, I couldn't really agree with that more. Anyone who does a lot of this - whether it's radiation or surgery - will tell you, really, what's stated in this paper. This is a great paper and patients all - it should be part of everyone's educational process, to see this.
What it's basically stating is that there are things other than, for instance, the skill of the surgeon and even the experience level of the surgeon - both, clearly, important - that are probably more important in being able to say whether you will get your erections back. And the thing that you saw in every parameter in the paper was that their erections beforehand were by far the biggest predictor of how well they would do after.
And I would add to that, something they couldn't measure in this paper that I've said for a long time - which is, really, the patient's motivation, the patient's partner's motivation, their relationship and how sexually active they were before surgery, very much are stronger indicators than some of the biological or surgical things we can offer them.
CONAN: And what - Tara Parker-Pope was mentioning earlier the different types of prostate cancers. Again, there are some that are very aggressive and that must be dealt with somehow. There are others that you're going to die with and not from.
ENGEL: Absolutely. Where that plays into this discussion - and it is very similar to breast cancer in that regard, in that they also have a wide spectrum; some are less aggressive, some more. These days, an important discussion to have with a patient is whether to be treated at all - that was in the editorial of this paper - or not.
Generally, if a patient goes out to say OK, I understand I'm likely to be cured, so what I'm going to focus mostly on is minimization of side effects, they tend to gravitate to places that say well, I can provide that for you 96 percent of the time.
But if they had this type of information in front of them, as I give to my patients, they may think twice about that. They may be willing to wait to be treated, and follow what we call an expectant management protocol. Not right for everybody, but probably right for more patients than use it right now.
CONAN: Let's go to Craig(ph), Craig on the line with us from Phoenix.
CRAIG: Yes, the reason I was calling is, I just recently was also diagnosed with prostate cancer at 5.7 and a Stage 2. But once -upon doing my own research - because I didn't feel I was really getting research on incontinence and impotence - that I decided to wait. And so I sort of challenged my doctor, and he agreed to do a process by which I periodically go in, get retested, potentially another biopsy.
But quality of life is incredibly important to me. And that means, you know, a full life, and so I have decided to back off. Now, two things happened real quickly. Number one, I recognized when I was first told, the fear of just hearing the word - you have cancer - and it was like my immediate reaction was, get it out of my body.
But then as I started doing my research, I began to say, wait a minute, I need to slow down here because there's lots of things that need to be considered.
CONAN: Tara Parker-Pope, that initial reaction, that's everybody's reaction. Cancer is a pretty nasty word.
PARKER-POPE: Exactly, and I think this caller makes such an important point about prostate cancer. I mean, it is hard to hear the words "you have cancer," and sometimes you do have to act very quickly, depending on the type of cancer you have. But prostate cancer is different, and Dr. Engel can talk about this. You are not on a deadline. You are not super-rushed. You have time to take a deep breath. You have time to get more than one opinion, to get a lot of information.
You don't have to panic at that moment. You have time to gather information and to get a second, third or fourth opinion, and make the decision that's right for you.
CONAN: Craig, good luck.
CRAIG: Thank you very much.
CONAN: Let's see if we can go next to - this is Jason(ph), Jason with us from Cheyenne, Wyoming.
JASON: Hi, I'm actually a family doc in Cheyenne, and I have had a prostotectomy. I was diagnosed at age 46 with a prostate cancer that, you know, there was some question on whether or not to do waitful watching or not. I was certainly aware of complications, and did an extensive search of literature. But at the time, it was very difficult to find the kinds of conclusions that are seen -evidenced in the current JAMA article.
One of the things that colored my decision to go ahead and be treated was the experience of taking care of people who had already had metastases to the bone, and taking care of them in hospice situations. And that might have made me move where I might not have otherwise moved, when I made my decision.
But in fact, what I had was an aggressive form because it had gone from being entirely within the gland to extending to the surgical border beyond the gland within a period of 30 days, from the time of biopsy to removal. Yes, I've had incontinence, and I think incontinence and erectile problems are inextricably interrelated, and people sometimes don't understand that.
But if I had to make the decision all over again, I would despite the fact that physically, I felt like I had aged 20 years overnight.
CONAN: I'm just seeing Dr. Engel nod his head in agreement with what you've been saying.
JASON: I think this program - the one fear I have about it is that it should not scare people off from getting diagnosed or treated. And these decisions have to be made with the realistic understanding that the consequence of treatment has to be weighed against the consequence of not treating it. And that's an incredibly individualized and personalized decision that has to be made.
ENGEL: This is always the danger. I had brought up that notion, of saying hey, we know about what was in this article and some of these outcome - this outcome data. The problem is, is it's so often that we see the backlash from something like this. Patients with more serious prostate cancers will then tend to say, I'm not going to be treated at all; or, I'm going to do something that is probably less appropriate.
These types of data oftentimes promote patients not to be treated, and that will come back to burn some people. So it's wise to understand what you're getting into. It's wise to challenge the doctor and to think about, am I a candidate for not being treated? - as the one caller. On the flipside, it's probably better to take an approach - if treatment is required, at least to go into it fully with a realistic expectation.
JASON: Because I can draw on my own experience, there's a certain level of empathy from - I can extend to those who I initially diagnosed as being likely as having prostate cancer - I tend to have them see a urologist that I would trust for myself or any member of my own family. And I tell them: If you're uncomfortable with it, ask any questions, get a second opinion; get a third opinion, if you need.
Some of them have sought fourth and fifth opinions. But the one thing that has come back is, they have always re-contacted me afterwards and said, you know, here's what my decision is, and I really appreciate the time taken to allow me to have options and make an important choice without anyone candy-coating anything.
CONAN: Well, Tara Parker-Pope, one of the problems you presented in your piece is that time is not provided in too many cases.
PARKER-POPE: Well, it really depends on the doctor and the situation. And I think some men do seek out these very high-volume surgeons - as I think they should. I mean, I think by definition, Dr. Engel is a high-volume surgeon. But he has structured his practice in a way where he does more than just the surgery. He told me in my article that, you know, the hard part is really after surgery.
The surgery is, you know, pretty straightforward. But it's the part after surgery, where you need to stick with the patient and really help his recovery, that is the challenge. And so many practices aren't set up that way. So I think that, you know, I was kind of surprised, to be honest. I mean, I know that when I go into a physician or a pediatrician appointment or whatever, it's pretty fast; you don't spend a lot of time with your doctor.
But I would've thought on a big decision like this, you might spend 40 minutes, you know, something like that. And so many men said their visits were really brief, and I was surprised by that. But I think that's just the nature, sometimes, of medical practice in this country, of billing, of - you know, if you're a high-volume surgeon, you're really busy; you don't have tons of time. So I think, you know, in this desire to communicate better with men and create more information, there has to be a way for these practices to set up, you know, a better structure for men so they do get all the information, they get all their questions answered. Because that's usually what I hear - I hear the men who are unhappy.
Dr. Engel is going to have a totally different set of patients that he deals with. But the people that end up calling a newspaper reporter, the people that end up posting on blogs, calling radio stations up - and these are people who have just had a different experience. And they weren't heard, they weren't listened to, and they didn't get their questions answered. And that's why they are reaching out to other places.
CONAN: Jason, thanks very much for the call.
JASON: You're welcome, sir.
CONAN: Here's email from Calvin: My life will never be as great as it was before surgery four years ago. Incontinence is a daily battle. As for intercourse, I now think I know what a eunuch must feel like - not much. I regret having the surgery.
And I wonder, is that the reaction you've gotten from some people, Tara Parker-Pope?
PARKER-POPE: You know, it's very heartbreaking. I do get a lot of emails like that. I should say, I get a lot of emails from men who are also relieved and happy with their decision. So, you know, these are anecdotes, and you can't make your decision about how you approach prostate cancer based on one man's experience. But I think that it's just so important to know - the question I would have for this person who emailed is, how much, you know, how prepared was he for what to expect, and how much information did he have before he, you know, made the decisions about treatment?
I think for a lot of these men, what I hear from them is, if I had only known; I just wish I had been told. And, you know, I think if they had been actively working with somebody, to work on some of these problems, you know, early on, right after treatment, you know, would their outcome be different? I don't know. But they would, I think, maybe not feel so helpless and so victimized by the process.
CONAN: Email from Julia in Iowa City: Is it typical for a man with untreated prostate cancer to have normal sexual function? Dr. Engel?
ENGEL: Well, that's - that also is a big star and a big conclusion that you can get from the paper here. If you look at the paper, you might see that even those patients that were seeking surgery had erectile dysfunction 30 percent of the time, and 50 percent of the radiation patients did. So prostate cancer doesn't, in itself, doesn't affect your erections. It's the treatment that affects them. But a large part of talking to patients beforehand about their expectation is being very honest. It's a troubled conversation.
It's one that usually is tense between the husband and wife when they've been married for 20 to 30 years. I probably spend - the hour or two that I spend with patients being a couples' counselor, more than anything, in terms of really getting it out on the table as to, do you want to have intercourse with your husband? You know, that's something - the answer, sometimes, is no, actually. So a lot of this has to do with understanding the patient's relationship, and that kind of thing. But prostate cancer in itself doesn't cause erectile dysfunction.
CONAN: If you ask, do you have erectile dysfunction? do, sometimes, the different partners have different answers?
ENGEL: Absolutely. So I actually - I've had this happen several times just in the last month. A patient would come in and say, I'd like to treat me. I'd like you to do surgery on me. But they're here alone. They're not here with their wife. And I will never offer them treatment. I'll say, I want you to come back with your wife, and we'll have that discussion together. There's always an enormous disparity. As well as postoperatively, there's an enormous disparity. The husband will say, you know, I don't have good erections. It's three or six months after my surgery. It may be my patient, where we've talked about it over and over, but they didn't want to hear that beforehand. So...
CONAN: All they heard was cancer.
ENGEL: They heard cancer. They heard that yes, patients have trouble here, but they uniformly - men uniformly think that they have a more ravenous sexual appetite than the next man. The wife being there will remind them of things and usually will say no, you're getting much better erections than you think you are. So yes, there's a big disparity.
CONAN: We're talking with Dr. Jason Engel, who's the clinical associate professor, director of urologic robotic surgery at George Washington University Hospital. Also with us is Tara Parker-Pope, editor of the New York Times Well blog. You're listening to TALK OF THE NATION from NPR News. And let's see if we have this - this is from a concerned wife: I'm 31 married to a 41-year-old man. My husband was diagnosed with prostate cancer this year. He's having a robotic radical prost - one of those things - removed later this year. Does your guest have any advice or resources, where we can go, or who we can talk with, about our sex life after surgery?
One thing we don't hear much about - my husband and I have not had kids yet. I focused on my education and career, and had no idea we'd be facing this at this time in our lives.
I don't think anybody has any expectation that they're facing this. Different questions to different people. Support groups, Tara Parker-Pope?
PARKER-POPE: Well, I think Dr. Engel probably has some very good information for this patient. But I'm surprised by the question, that there has not been a discussion about fertility, about family planning. I'm sort of surprised by that. I'm interested what Dr. Engel has to say.
ENGEL: They - so let's just pretend this was my patient sitting in front of me. I mean, these people would need a lot of counseling. That's a 31-year-old woman, this is an active sexual relationship. She'd be - I would be telling her very frankly, your husband is about to be impotent, and we need to talk about that. They would go into the surgery understanding that, just as the article predicts. He's 41, he probably has no co-morbidities, he's probably not obese, he probably has interest - from him and his spouse. So the likelihood of him getting erections back at two years would be probably 85 percent, even as predicted on the pessimistic data in this article.
But certainly, they would have to understand, what will your options be for children afterwards? Should you be doing sperm banking now? Or, will you be willing to simply commit - do you have the funds to commit to a fertility center doing in vitro fertilization, which you can do after prostatectomy. But that somebody, I would spend a long time with. This is exactly the type of patient where it is - if they have the funds available to travel and to get many opinions, they are the type that would, typically, be looking for more - someone to say, everything is going to be OK. It's a 41-year-old man that may not want to hear you say: You're going to be impotent. And if I was giving those people that talk, I would perhaps lose this patient because of the frankness of that discussion. But that's a discussion they need to have, probably with more than one physician.
CONAN: Tara Parker-Pope, just briefly, we've been talking, as he suggests, the people who write to blogs, and the people who call radio stations, are the people who've had problems. A lot of the time, this does work out.
PARKER-POPE: Yes. I mean, I think there are a number of men who find that life after a prostate cancer treatment is different, but it's still a good life. And it's still one that they're happy to have and to be relatively healthy. I remember interviewing one man who said that, you know, during sex, he still hears the orchestra, but he just doesn't hear the trumpet section anymore. I thought that was sort of a nice way to put it. He still enjoys sex, and he still enjoys his wife and his life, and everything that it has to offer. But that's a man who, I think, is happy with his situation because he had all the information going in, and he knew what to expect.
CONAN: Tara Parker-Pope, editor of The New York Times Well blog, thanks very much for your time today.
PARKER-POPE: Thank you.
CONAN: And our thanks as well to Dr. Jason Engel, of the George Washington University Hospital, who joined us here in Studio 3A. Thanks very much.
ENGEL: Thank you very much.
CONAN: Up next: The drug wars in Mexico. Few U.S. reporters cross the border regularly to cover the violence and the victims. Angela Kocherga is an exception. She'll join us next to tell us what she's seen. Stay with us. It's the TALK OF THE NATION from NPR News.
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