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Brian M Talks About Dealing With ED

Brian M was diagnosed with prostate cancer in 2011.

He discusses with Prostatepedia his own struggles with erectile dysfunction after surgery and offers some thoughts for men in similar situations.

How did you find out that you had prostate cancer?

Brian M: I had my first biopsy, believe it or not, on September 11, 2001. I was in the waiting room when I saw the first tower come down. The second tower was struck obviously shortly thereafter. Sometime between when I saw the first tower go down and when I was laying on my side for the biopsy, my urologist who was performing the biopsy found out that his son, who worked at the World Trade Center, had been unexpectedly delayed and didn’t make it to work on time. Obviously, none of us knew what the hell was going on at the time, except that this terrible thing had happened. It was an interesting start to this whole process.

My family doctor must have seen my PSA rising, although I think back then it was still only three or four, something like that. I don’t remember the numbers. For whatever reason, my doctor sent me over to the urologist who said, “We probably ought to do a biopsy.” That biopsy was negative. All 12 cores. But I also had a very large prostate.

I was on Proscar (finasteride) for BPH for a number of years. I then switched to Avodart (dutasteride). I visited my urologist once a year. In 2011, I needed a refill. They said, “We can’t prescribe this. You need to come in.” They did my PSA and it turned out to be about 13. They said, “We’ve got to do another biopsy.”

I put that off. It was summertime and my daughter was getting married in November. I had a suspicion what was going on, so I said, “Let’s put it off until after my daughter’s wedding and then we’ll get the biopsy.”

Out of 12 cores, six had cancer. We now know it was probably on one side. I had suspected I had cancer, but that’s when I had discovered for sure. I had to make some decisions.

That particular urology group—and I don’t really mean this disrespectfully —is almost a wholesale urology. It’s the hugest group in the area and it’s a business. Of course, all medicine is a business these days. But I happened to go to a prostate cancer support group. One guy there said, “You might try this other urologist; he’s really good and takes a lot of time with you.”

That appealed to me because with this other group everything seemed a bit rushed. I made an appointment. The urologist was able to see me within a couple of days. He had a solo practice and was true to this fellow’s recommendation. He took a lot of time explaining everything and going through it with my wife and me.

We scheduled the surgery. I’m probably one of the last people to have an open prostatectomy because everybody is doing robotic surgery now. He was masterful. Everything went fine; the surgery itself went fine.

Did both urologists—the one in the large group practice and the solo practitioner —discuss side effects with you? What were those conversations like?

Brian M: To be fair to the large urology group, they gave me the diagnosis but we didn’t have that next conversation about scheduling surgery. It may well have been that they would have gone into more depth had we done that.

I just wasn’t impressed with that urologist. He just looked almost embarrassed to have to tell me about my cancer. I guess that’s never a great conversation to have with anyone.

The solo urologist was wonderful, though. My wife was there. I came with a pad full of questions. He answered them, did not mislead, did not promise any results that he couldn’t deliver—particularly, retrospectively. We felt really good about meeting with him. He didn’t pressure us. He said, “You’ve still got some time to think about it. Go talk to somebody else if you want.”

He didn’t rush you.

Brian M: He explained the possible side effects that I, even with all my so-called reading as a layman, didn’t realize. It was encouraging when he explained that even without an erection, one could have an orgasm. That was a little bit of a consolation.

He didn’t go into details about penile rehab: what is involved, what is the best way, etc. But this was six or seven years ago. I don’t know if it was discussed quite as much as it seems to be now in some of the online forums and blogs.

What was your experience with erectile dysfunction after surgery? Did your urologist give you any guidance about how to manage it?

Brian M: I don’t think he did. In a matter-of-fact way, we talked about Viagra (sildenafil). I don’t remember him saying use it or lose it, which is the big term now in penile rehab.

I know now that some doctors are even recommending that penile rehab start before surgery. For example, taking low-dose Cialis (tadalafil) or Viagra (sildenafil) before. I’m not sure exactly why. Certainly afterward, I think they’re combining masturbation with taking a low dose of either drug at night to keep the blood circulating. As informative and as willing to answer any questions as he was, I don’t recall him going into detail about that.

Did you feel comfortable talking to him about ED or were you still focused on getting your cancer under control?

Brian M: I certainly did feel comfortable. We went back every three months for my PSA and I’d get a prescription for Viagra (sildenafil).

The incontinence was minimal after the catheter came out. I still have a little bit. Stress incontinence is the main thing. I hear men talking about constant dribbling and whatnot, and luckily, I’ve never had that. I do have the stress incontinence, which has gotten better. Of course, during sexual activities—during ejaculation— for a while, I had to be careful to wear a condom because urine would come out. I seem to have gotten that under control, but that was certainly a side effect immediately afterward.

Pretty soon after that catheter came out, I began to take penile rehab seriously.

My wife and I would joke about it. Honey, it’s for medical purposes. She’s a good egg. It’s hard to believe I’m saying that, but we had fun with it. It’s obviously a laughable situation. Within a month, I was able to have an orgasm. It was painful. I remember thinking, “Have I done this too soon? Have I hurt myself?” The second time there was a little twinge of pain. After that, no more pain.

I did not have a teenage erection by any means, even with Viagra (sildenafil). But I was able to have orgasms.

For whatever reason, and I attribute it to the fact that I was extra sensitive after surgery, the orgasm was more incredible than before.

It was stunning. I was amazed. My wife said I had never reacted that way before. Maybe I was just so grateful that something was happening.

Did function just come back after that initial painful episode a month after surgery?

Brian M: Five months after the surgery, in August, we went on vacation. We had a great time. For whatever reason, on that vacation, I got a usable erection for the first time. It had been getting full and pleasurable, but that was the first time I could get an erection adequate for intercourse.

But did I ever get back to normal? Here’s how I compare it. I’m not sure that a woman can appreciate this; I’d be curious if other men have this same reaction.

Back in the day, you just started daydreaming or fantasizing and then you had an erection. I don’t know that I can get a spontaneous erection like that anymore, just from fantasizing. They say your brain is the number one sex organ anyway.

I said this to a new fellow at my support group last night: “No matter how much you tug at it, you’ve got to have some fantasy that makes you horny.” I’m not being very eloquent here.

There are two nerves that are necessary for erections. I refer to them as the “hydraulics.” If the surgeon must remove both nerves, then a man cannot have an erection naturally. He must use shots or have an implant. But if at least one nerve can be saved, then what is going on in the brain—the lustful thoughts— can transmit the signals to the hydraulic nerve that causes blood to flow into the penis and cause an erection. The nerves controlling orgasm—the pleasure nerves– are rarely damaged by the surgery.

If there are no erotic or arousing thoughts occurring in the brain, it is very difficult to achieve an erection just from pure physical manipulation. At least that’s my situation post-surgery.

Then again, I’m 66. Maybe it wouldn’t happen now anyway. That’s the other factor. How much of this is age-related? Would it be like this anyway without the surgery? I don’t know.

After the surgery, you took Viagra (sildenafil) at night?

Brian M: Almost every night. I would cut them into fourths. I bought them from Canada because they’re so much cheaper from Canadian pharmacies.

What role did your support group play while you were struggling with ED after surgery? Were you able to talk openly to the men in the group about your struggles?

Brian M: Some of what you’re asking just happened to come up in last night’s meeting. The group is starting to feel comfortable with each other. Even though we have new guys come in, the new guys are as scared as we were at first.

I made the comment last night that most women probably assume that men spend a lot of time talking about their genitals and their sex life, but we really don’t. It’s awkward. Of course, what is even more awkward are our feelings about what’s happening. We never talk about our feelings. Those fears about what it means to be a man are hard for guys to talk about. In the group, we seem to be breaking through in terms of what men are willing to say and ask.

I seem to be the one who always brings up the sex questions and issues. Maybe that’s because I keep thinking my days are numbered, so I want to get as much as I can. I don’t know why I’m so interested in it, but I am afraid of what the loss of sexual intimacy will mean.

One fellow last month was having terrible incontinence. We said, “Well, you’re only two months out. Hold on, hold on.” Last night he came in and said, “It dried up really well.” The new guy who was sitting across the way hadn’t even had the surgery yet, but could hear him say, “Most people get some form of erectile function back, even though there are obviously bad stories.”

It seems like a lot of guys come in absolutely bewildered. A couple other guys, like me, spend a lot of time on UsToo or Prostatepedia trying to get as much information as possible. More men come into the group without information than those who come in with information.

I think they’re getting a degree of a comfort level listening to us old-timers. I tell them don’t jump, don’t rush. You’ve got time to think about it. It always breaks the ice when we end up sheepishly laughing as we talk about how to rehabilitate your penis. It’s just the nature of the beast, I guess.

It’s like any other part of the body though. You wouldn’t feel weird talking about rehabilitating your knee after surgery.

Brian M: If you think about the visuals of that conversation, it’s not quite like any other part of the body. We’ve probably all been at a party or other social situation where someone was describing the rehab they were going through for a knee or hip replacement. And as you’re listening to them describe the exercises involved in their rehab, you’re probably visualizing what they were going through.

Now, picture that same conversation if a man were asked how he’s doing after prostate surgery: “So, Joe, they got you doing any rehab after your surgery?” Joe’s probably got to refill his drink at that point.

Outside of my support group, I can’t think of many opportunities to get into a discussion of one’s successes or failures at masturbation. But then, there are not usually a lot of cocktail conversations about hemorrhoid surgery either which is perfectly understandable. Again, just reinforcing the benefits of a support group, I guess.

Well, erectile dysfunction cuts to the chase of how you feel about who you are as a man or what it means to be a man.

Brian M: Yes, it does.

And that is different for each person. Besides, there’s a cultural idea of what that means.

Brian M: Right. And not all of it wonderful, actually. That may be part of it. Plenty of women out there probably say you’re always thinking about sex anyway.

My wife has been wonderful about it. We’ve always been innovative in having fun. She’s in that difficult position of wanting to reassure me that it’s okay and yet not wanting to act like it’s okay if I lose my ability or libido. I’m trying to figure out a way to make her feel like it’s okay to say it’s okay. I think that’s an issue for women: they want to say okay if you can’t perform. Well, we don’t want it to be okay that we can’t perform.

If it’s okay, then maybe it doesn’t matter to her.

Brian M: That’s the dilemma. We men fantasize that our women can’t stop thinking about our physical attributes and sexual prowess. (Note I said fantasize). We’d like to imagine they think about our genitals as much as we think about theirs. So there are mixed emotions when our wives say: “It’s ok, honey, I don’t need to have intercourse to feel satisfied.” They are trying to be supportive by suggesting our penises are not that important to them. That’s a difficult line to walk for them—and for us.

Do you have any advice for other men about dealing with ED?

Brian M: You’ve got to start talking about it. You’ve got to be prepared to feel embarrassed for a bit and then stop being embarrassed about it. How do you advise someone to take penile rehab seriously? You almost got to figure out a joking way to do it. You felt guilty about masturbation when you were a kid, but you don’t have to feel guilty about it anymore. In fact, it’s recommended medically for you.

Doctor’s orders.

Brian M: Doctor’s orders, that’s right. I do believe Use-it-or-lose-it is a real phenomenon. There’s just so much involved. It’s not just playing with yourself. You’ve got to somehow get your mind in a place where whatever those thoughts are that send the signal down those nerves. You’ve got to get your mind involved in a way that you’re not used to having to think about. Now you have to think about it: I have to go masturbate. If you want it to get erect, you need to have some thoughts that would cause that to happen.

What would you say to a man who says he feels like he has to put too much effort into it? That this just isn’t worth it?

Brian M: I’m not sure I understand. I can’t picture it not being worth it. When has an orgasm not been worth it? It’s an orgasm for God’s sake.

There may be a whole lot of other baggage involved. I have had periods, believe it or not, of anxiety or depression. I’m a lawyer. Back in the day when I was preparing for trial, I would get so focused and anxious. Sex was the last thing on my mind.

All those emotional things that play into it—if you’re on medication, if you have diabetes, if you have a heart condition. There are a lot of other things that enter into someone saying, “I’m not interested in sex at the moment.” But saying, “I just don’t care anymore?” I can’t relate to that.

Ask me next year when I’m on hormones. Maybe I’ll have a better answer for you.

You’ll remember what you once had. Maybe you would miss it.

Brian M: I’m hoping I remember it. I have read that everything is still sensitive and you can still have orgasms after being on hormones. What I keep saying to my wife is that she’s going to have to be the instigator. You won’t be desired. Apparently, I lose all of that. I’ll appreciate you, but I may not desire you. That’s not something I’m looking forward to— that change in roles.

I think you’re right. Many women are used to not being the instigator.

Brian M: I think women grow up being an object of desire— sometimes in a nice way and sometimes in a not nice way. Before you all go out, you pretty yourselves up. We don’t necessarily do that.

Frankly, I never even thought about all this until I started dealing with what it might be like to not have a libido. From what I’m reading, those emotions are just not there. I’m scared of it happening. I want her to understand that it might be a difference for her, too. When she walks out of the shower, I may not care.

If you talk about it openly and have a plan for having to deal with it, then it won’t be as much of an issue.

Brian M: That’s what we’re trying to do. I’m trying to forward her the articles I’m reading.

Does she read them?

Brian M: I think she does. She doesn’t necessarily say, “I read the one you sent this morning,” but we talk about it. Right now she doesn’t want me to worry. We have time to worry.

I’m surprised how much of what we just talked about also came up in my support group last night. For some reason, we really opened up and started talking about our feelings more than we had before.

There was a period when I was not going regularly. But I find myself wanting to go regularly now for two reasons. One, as things are starting to happen to me I get some insights from other people.

Also, some men have been coming for 10 years. They’re just giving back now. I think I ought to do that, too. Even if I don’t need to be there for my own personal reasons, inevitably, there’s a new guy who’s just got this look on his face. It is a good feeling to be able to help fill in the gaps for him without trying to scare him, but by being realistic.

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Dr. Arthur Burnett On Erectile Dysfunction + Cancer Treatment

Dr. Arthur Burnett is the Director of both the Basic Science Laboratory in Neurourology and the Sexual Medicine Fellowship Program at Johns Hopkins University in Baltimore, Maryland.

Prostatepedia spoke with him about erectile dysfunction (ED) and prostate cancer treatments.

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Why did you become a doctor?

Dr. Arthur Burnett: I was inspired by seeing other individuals through either the media or just personal contacts who were physicians at the time. I was a young man, perhaps in my teenage years, when I was inspired by the impact the profession allowed a physician to have on people’s lives. I sensed that I had a talent for that sort of thing and certainly had an aptitude for science and medicine as the years went on. That was the groundwork for my continuing on to do the appropriate academic training to become a physician.

Have you ever had any particular patients whose cases changed how you see yourself as a doctor or how you approach the art of medicine?

Dr. Burnett: I think patients, in general, have been reinforcing in many respects. There are certainly patients whose case stories inspire you by their humanness and just by the fact that they connect with you as a person and show compassion and caring themselves. That is what has been inspirational about being a physician.

How common is ED after prostate cancer?

Dr. Burnett: Prostate cancer in and of itself is not necessarily connected with ED; it’s more the treatments unless the cancer really is at a more advanced stage. Advanced prostate cancer can have either local effects because of cancer progression on structures of the pelvis or systemic effects—that is, it progresses and then weakens the person’s body.

Treatments that reflect either local treatments or more systemic, or body-wide, treatments can have a negative impact on one’s sexual function, including erectile physiology or erectile functions. Local treatments include surgery and radiation as conventional interventions. More systemic therapies include various kinds of hormone suppressive agents, or even chemotherapies, that can adversely affect the physiology of the erection and impact how nerves, blood vessels, and hormones interact to bring about an erection response.

Are there any steps a man can take before he starts treatment that might help prevent problems after?

Dr. Burnett: I certainly believe that’s so. I think patients need to be informed about the factors that can adversely affect erectile function. I think patients assume all too often that the physician is responsible for their best health. But patients also need to recognize that their best health status is also key to retaining function in the face of any treatments we can bring.

Being healthier and physically fit— not out of shape, not overweight, not a cigarette smoker—can increase your likelihood of preserving better health in the face of our treatments. Those patients who do not observe these kinds of health habits are setting themselves up to have less reserve function in the face of our treatments.

Not just in terms of ED, but in terms of general recovery?

Dr. Burnett: Absolutely. Even more specifically, because we’re talking about erectile function, those patients who are out of shape, who are smokers, who have adverse health conditions that they may not have control over, are not helping themselves with regard to their erection function as well as to their overall body health.

What could you say to a man who brings up the subject of ED with his doctor and finds that the conversation isn’t as in-depth as he would like? What do you suggest he do? See another doctor? See a specialist in ED?

Dr. Burnett: I think that’s an all-too-often scenario, that sometimes the care provider is neglectful about some of the basic aspects of a person’s health status. As the care provider himself is certainly attentive to his own sexual function, he should be aware of that for the patient. All too often, that’s not done. My advice would be to tell the patient that he should go ahead and be assertive or proactive about asking about these sorts of things and really inquire.

An informed patient, perhaps with this kind of communication I’m sharing, will be empowered to communicate that this is important to him. While he is seeking the best intervention for his cancer management, all aspects need to be put on the table for discussion. Ask that care provider to help address these things. If that care provider is not able to address it, ask him who else can be of service, as part of the care team perhaps, to address these problems or potential problems as they may arise expectedly with interventions.

What treatments are available for men suffering from ED after prostate cancer treatment? Are there some treatments that are more effective after surgery or radiation or hormonal therapy?

Dr. Burnett: We have a host of treatments that are available and can be offered for managing ED in this scenario, as much as for any presentation of ED in our modern times. We’re certainly much better in terms of what we can offer medically than where we were a generation ago, but we still have interventions that largely are addressing the symptom presentation of erection dysfunction; they don’t necessarily correct the erection disorders. They treat the symptomatic presentation of a man saying, “I cannot get an erection, and what do you have to offer?” These interventions, more or less, are used on demand to help him achieve an erection response when needed.

These therapies range from the oral medications that are very effective and are FDA approved, to semi-intrusive interventions brought to the genital area in the form of penile injection therapy or vacuum erection device therapy. We also have penile prosthesis surgery, which obviously is much more invasive. Some patients either prefer this approach or they find that the other options are just ineffective or contraindicated.

We have to understand the patient’s case, his preferences, and the severity of his ED. Certain men who’ve had prostate cancer treatments may have more severe erection dysfunction and may not respond well to oral therapies such as Viagra (sildenafil) and Cialis (tadalafil). That patient may be inclined to move forward with some of these somewhat more intrusive, or even invasive, surgical options if needed.

Do you have any advice for men who either are worried about ED before treatment or who are already suffering from ED after treatment?

Dr. Burnett: The sobering truth is that some of the interventions for managing prostate cancer can have adverse effects on your sexual function. At the same time, understand that we have interventions to address ED. Fear of losing one’s erections hopefully should not lead one to avoid proper treatment.

As one patient quipped to me once in the past: “The ultimate form of ED is death.” Not addressing your cancer and not being around for your loved ones is certainly not the best option to pursue. You have to be attentive to addressing your disease but also recognize that we can address your ED or other sexual dysfunctions. Know that these interventions can be sought amidst the treatment for the prostate cancer.

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Dr. Snuffy Myers On ED After Treatment

In September, we’re talking about erectile dysfunction after prostate cancer treatment.

Dr. Charles Snuffy Myers frames this month’s conversations.

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Most men with prostate cancer have concerns about sexual function because diminished erectile dysfunction is a frequent side effect of the most widely used treatments. Additionally, as men get older they often have issues with erectile dysfunction even if they do not have prostate cancer. In fact, prostate cancer and its treatments are not the major cause of male sexual dysfunction. The two most common causes are diabetes and cardiovascular disease.

One of the more common mistakes physicians make is to attribute all medical problems to the cancer and its treatment. Men with prostate cancer often suffer from undiagnosed or under-treated diabetes or cardiovascular disease. For this reason, newly diagnosed prostate cancer patients should be evaluated for these two diseases. This is especially true if you are likely to need hormonal therapy, as this treatment can exacerbate both diseases.

Several drugs used to treat cardiovascular disease and diabetes may well have a favorable impact on the clinical course of prostate cancer, including the statins used to lower cholesterol, ARBs used to treat hypertension, and metformin used to treat diabetes. With this in mind, there should be no hesitation to treat diabetes and cardiovascular disease appropriately in men with prostate cancer.

Standard treatment of erectile function often centers on the use of Viagra (sildenafil), Levitra (vardenafil), Cialis (tadalafil), or related drugs. Erections are normally triggered by dilation of the arteries that supply the penis. This is caused by the release of nitric oxide, a powerful vasodilator. Viagra (sildenafil) and related drugs make the arteries to the penis more sensitive to the action of nitric oxide. However, this effect is not limited to arteries in the penis but also develop in arteries elsewhere. As a result, some patients experience symptoms of low blood pressure and facial flushing. Drugs that release nitric oxide, such as nitroglycerine, can cause severe hypotension when co-administered with Viagra (sildenafil) or related drugs.

These drugs can be administered in a single dose shortly before sex or at much lower doses chronically. There is some evidence that chronic low dose administration is more effective for penile rehabilitation after surgery or radiation. There is a biochemical rationale for this. Arterial health appears to be at least partially supported by chronic release of nitric oxide and these drugs may augment that effect.

There are men who do not adequately respond to oral drugs, the vacuum pump, or penile injections. In this situation, the penile implant offers a reasonable option. In skilled hands, this procedure is usually very effective. Unfortunately, too few patients select this path.

Treatment for erectile dysfunction has improved dramatically over the past two decades. Most men with erectile dysfunction after prostate cancer treatment can recover sufficient function to have a sex life, but treatment needs to be initiated in a timely fashion. It is also important to not ignore aggressive options like penile injection or penile implant.

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Patients Speak: Let’s Talk About It

Gary H spoke with Prostatepedia about prostate cancer journey and the choices he’s made along the way.

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How were you initially diagnosed with prostate cancer?

Gary H: I live in Colorado, and I get a physical every year. I didn’t know this, but my doctor started checking my PSA at 40. About five years ago, when I was 54, my doctor said my PSA went up from 2.0 to about 4.4. He said there was a small chance of cancer, but when it gets up to that number, it’s important to check it, so he recommended a biopsy. I went in there just for a physical. Next thing you know, I’m going to get a biopsy.

I found a good doc, went in, and did the biopsy. He did about 12 needles. It turned out that I had some cancer in certain parts of my prostate.

He said, “You’re a young guy. Just go take it out.” But I started researching more and more, and because my PSA wasn’t going up very fast, I started the journey looking at what to do.

Where did you go for research? Did you turn to the internet? Friends?

Gary H: Yes. I talked to people I know who knew someone who went through it. I just talked to lots of people who had a friend, brother, or relative, and I just called them. From them, I heard everything from “I had it taken out” to “active surveillance.” I was getting calls about the proton or doing brachy. I was amazed by how many different approaches there are. I got a feeling for what I needed to do, and then I talked to four or five top surgeons and in different places, like Sloan Kettering, Johns Hopkins, and MD Anderson.

You did your due diligence.

Gary H: I sure did. I did everything I could possibly do, and from what I understood, if PSA is under 10, it hasn’t spread. I had about 8, but it wasn’t going very fast. I found a fairly young fellow in Denver that I had a lot of confidence in. After speaking with about seven people who had it removed and told me what to expect, I elected to have it removed. That was a big decision.

How did you find the surgeon that you ended up going with?

Gary H: I felt that someone who had done thousands of prostatectomies was just knocking them out, going right through them and probably pretty fast. I wanted someone who hadn’t done so many but who really took his time, someone very serious about it, someone who cared maybe a little more. The surgery may take only an hour, but I wanted a meticulous person.

A friend of mine who sold healthcare products in hospitals all over spoke very highly of this one doctor in Colorado. That’s how I found my doctor. Then I had to decide between the old fashioned or robotic way. While the guys that go in there with their hands can feel what’s going on, which can be beneficial, there can be a lot more bleeding. I chose robotic because there would be less bleeding, and I’m glad I did.

Did you have any side effects after the surgery?

Gary H: Not really. Because I was young, they said I should be fine, and I really didn’t have any side effects. It took me a little longer to heal than I thought it would. I started exercising maybe before I should’ve. I should’ve waited a little bit longer.

Otherwise, everything went the way it was supposed to, and everything was great. That was a little over three years ago. I have been as athletic as ever, and I never had a problem with incontinence.

What kind of monitoring did they do after the surgery?

Gary H: About every three months, for about three years, I had my PSA checked. About five months ago, my PSA showed up as 0.02. Before that, it was 0.01, which is what they call undetectable. It’s still undetectable, but it went up to 0.06. I just had another test, and I’m waiting on the results. It’s a whole new program now.

As far as what I’ve learned, the doubling time is the big thing, and so it’s been doubling every two or three months, which is pretty quick. But the number is very low. I’m starting to ask questions again, but the speed is the concern, not so much the number.

Right: the velocity, they say.

Gary H: Right. Depending on this new test, I may have it radiated.

Is this something your doctor suggested, or is this a result of your previous research and discussions with other men?

Gary H: Probably a combination. My doctor initially told me that if it gets to 0.20, we should look at doing radiation and maybe hormone. Then, it was only 0.02, so I had a long way to go. Because of the speed of it, he advised to just have it radiated, that I didn’t need the hormone at this point. Because the doubling time is minimal but going faster, the velocity threw me a curve ball.

Have you had any imaging studies to see what’s going on, or is it so far just blood tests that you’re getting?

Gary H: No. No imaging. It’s because the number is so low. They say they wouldn’t be able to detect anything. But I plan to probably do the imaging. My one doc says it doesn’t get in your bones until it goes up to 40 or 50. A PSA of 0.03 or even 0.06 is really just starting to get going, so it’s most likely still in the bed.

For right now, you’re just in a waiting game, right?

Gary H: Yeah. I’m waiting today, actually. But I’m not concerned or worried. It’s a nonissue because of all the information. The more you know, the more comfortable you are. And it’s really out of my mind until maybe the day I’ve got to go and have blood work. Then, I feel like I’m in the electric chair for the next six to eight hours until I find out.

There’s that waiting thing, right?

Gary H: That’s right. That’s the only real negative, I suppose.

They call that PSA anxiety.

Gary H: Yeah. There you go. And now I’m not too worried. There are lots of great technologies and options. It’s just the radiation that concerns me, really. I’ve got to be in one place for two months. That’s the thing.

There are many good radiation therapists out there, so I’m sure you’ll be in good hands. It’s also good to have an action plan for what you would do next if you need to take more action, right?

Gary H: It sure is comforting that way. Now, what I went through with prostate cancer is not the same as other forms of cancers. I guess I could say I’m very fortunate to have found it when I did and to have had a doctor that was checking me all the time.

Right. You didn’t even know you were getting your PSA checked.

Gary H: I didn’t even know.

Do you have any thoughts for other men who are newly diagnosed or in a similar situation to yours?

Gary H: When you first hear about it, your initial reaction is: okay, what does that mean? Prostate cancer hasn’t really= changed my life. I still exercise. I feel great. I compete as a golfer. It’s not like all of a sudden I’ve got to go and sit in a chair, and read a book for the rest of my life.

It’s just a nuisance more than anything.

That’s if you stay on top of it. Now, of course, it could’ve been a lot worse. I had an uncle who passed away back in 1982 of prostate cancer, so it was in my family. He had waited and waited. He was supposed to have it out, but he was afraid, so he waited an extra year or two. By then, it was too late.

Do what you have to do initially, and learn as much as you can about your disease. There are lots of people to talk to and options out there.

At one point, for example, I was going to do the brachy. Once, I almost did the cryo. I was actually up at 6:00 am getting ready to go to the hospital for the cryo treatment, but I didn’t. I just didn’t feel right. I went the aggressive route and had it removed. Just do what you have to do. It’s not a painful experience, really. It’s more of a nuisance from your daily activities.

You have to step back, reevaluate, and take some time. Figure out what approach to take, and go that route.

What about reaching out to other men because it sounds like you really did? You had a lot of discussions with your friends and family. Would you recommend that other men do that as well?

Gary H: Oh, absolutely. Everybody’s different. I know people who are not very social and just rely on the internet. Others will talk to every Tom, Dick, and Harry, and that’s how I was. I did a little bit of everything. I had three close pals who had it, so I talked to them.

Everybody’s an individual and different about what approach they want to take. I have a friend who has a similar situation to mine, but he’s chosen active surveillance. He’s really staying right around that number, and it’s not going anywhere.

You do read conflicting things, for example, that PSA is not important, but it is important. If it’s on the move, you need to do something about it. So, reaching out and talking with other men is important, even just to sort through conflicting information.

People find it helpful to listen to other men’s stories.

Gary H: I like it a lot. I travel all over as a competitive golfer, and I always wanted to hook up with some organization, so while traveling, I could speak in different towns each week. I am competing. I’m out there. I’ve been through it all. I’d like to share with others.

There’s still a bit of a cultural shyness or reticence about speaking about prostate cancer. Perhaps it’s a gender thing, but a lot of men are hesitant to talk about it.

Gary H: Yeah. I’m not. I’m not at all.

Any way you can get the dialogue out there is good.

Gary H: I’m very open about it. I don’t have a problem. It’s a certain age. It’s not like an 18-year-old so much. We’re older now. Let’s talk about it.

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Dr. John Gore: Why Medicine?

Dr. John Gore is a clinician, surgeon, researcher, and educator specializing in urologic oncology and general urology at the University of Washington.

Prostatepedia spoke with him about how Decipher changes the way doctors treat men with prostate cancer.

Why did you become a doctor?

Dr. John Gore: My initial vision for my life was that I was going to be a lawyer. Then I found that I really enjoyed my experiences while interning at the hospital. That brought about an application to medical school. I think being a doctor offers a chance to have a daily meaningful impact, which is a unique part of the job.

How did you end up working in urology?

Dr. Gore: Urology is a specialty that very few people enter medical school thinking that they want to do. In part, most people are like I was and don’t even know about the specialty. I don’t have any doctors in my family. The only doctor I knew was my own pediatrician. I just assumed I was going to be a pediatrician.

But I really enjoyed surgery. I enjoyed being in the operating room. I just really enjoy the generic construct that someone has a problem and I have the tools to fix it.

Urology is an interesting hybrid. Most surgeries have a homolog in internal medicine. For example, there’s cardiothoracic surgery and cardiology. There’s colorectal surgery and gastroenterology. We don’t really have that in urology. We do a lot of chronic disease management. We do a lot of long-term follow-up of our own patients. It is, in many ways, a hybrid of internal medicine and surgery, which is really cool.

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Dr. Felix Feng: Why I Became A Doctor

Dr. Felix Feng is a physician-scientist at University of California, San Francisco (UCSF) keenly interested in improving outcomes for patients with prostate cancer. His research centers on discovering prognostic/predictive biomarkers in prostate cancer and developing rational approaches to targeted treatment for therapy-resistant prostate cancer. He also sees patients through his prostate cancer clinic at UCSF.

Prostatepedia spoke with him about why he became a doctor who cares for men with prostate cancer.

Why did you become a doctor?

Dr. Felix Feng: I became a doctor because my family has a strong history of cancer. Unfortunately, I learned the repercussions of cancer at an early age. All four of my grandparents passed away from some form of cancer. My father has successfully overcome three different cancers. Just last year, my sister, unfortunately, passed away in her 40s from cancer.

Before ever becoming a doctor, I was part of many patients’ families. I saw it strongly from the patient side and decided that if I was going to commit my life to studying something, it was going to be cancer.

So then your journey is really personal.

Dr. Feng: Very personal.

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The Making of A Cancer Activist

Joel Nowak is a prostate cancer patient and well-known cancer activist.

Tell us about your own prostate cancer journey and how you came to cancer activism.

Mr. Joel Nowak: Part of my journey to being an advocate pertains not only to having prostate cancer and recurrence but also to the fact that I had multiple primary cancers. I currently have five different primary cancer diagnoses.

I was treated initially for prostate cancer at the end of 2001. I had a Gleason 3 + 4 with a PSA of only 4. I had surgery. I went back in five years and my PSA went crazy, up into the 80s.

At that point, it was a recurrence. We did a bunch of scans. We identified a couple of lymph nodes in the prostate bed, as well as a very significant and large tumor in my kidney. At that moment, the assumption was that I had a prostate cancer tumor in the kidney and that the kidney had stopped functioning and was basically dead. I had a nephrectomy, which is the removal of the kidney. We found out that it was a different diagnosis: clear cell renal cancer.

Looking back, I see that prostate cancer recurrence saved my life because that’s how I found out that I had renal cancer. If it weren’t for my prostate cancer recurring, I would not be here today.

I was in my early 50s, so I was fairly young at the time. I knew I was metastatic with prostate cancer and had been diagnosed with another primary cancer. Knowing that I was metastatic weighed very heavily on me. There was no way to use that C-word—cure—which I don’t like to use. I looked desperately for people in a similar situation. I refer to it as looking like me, but I don’t mean physically. I mean people in their 50s, with a kid in high school, a kid in college, and metastatic prostate cancer that was incurable and possibly terminal.

I found myself becoming angrier and angrier.

Not only did I have metastatic cancer, but also I felt very alone in the sense that I couldn’t find anybody in a similar situation. I went from one cancer support group to another. Though I lived in metropolitan New York where there are options, I still could never find anybody I could relate to directly, someone with a similar experience. I found plenty of older men who were worried about whether or not they would make it to their grandchild’s wedding and things like that, but for me, that had no relevance. I became more isolated, lonelier, and angry.

One night, I was inappropriate with the group leader of one support group. I was overly aggressive and blamed that person for what I perceived as my situation. Instead of reacting to my aggression, the person just sat back in their chair, looked at me, and said, “Why don’t you do something about it?” I went home and discussed it with my wife who tried to stabilize me. “Why don’t you,” she said. I got angrier at first and just stewed for a while.

It has been 10 years, but when I went to bed that night I thought I was going to die within a few years. It’s common for many men with recurrence or metastatic cancer to wonder if they’re going to die in a year or two. I felt terrible and angry. I’m not really an angry person, but I had become a very hostile person.

When I woke up the next morning, I decided that I didn’t want to live my life feeling that way. I was going to find a way to let go of that anger and do something about it. That’s how I got involved with activism.

You decided to channel all the fear, anger, and anxiety into something positive.

Mr. Nowak: Yes. I think that’s what it was. I’m not saying that I still don’t have moments; I do. And since then, I’ve had two additional primary cancer diagnoses. One of them was a rare cancer. But the prostate cancer was the only one that caused that kind of emotional response, probably because that is the only one, so far, that is metastatic.

I spend a lot of time with prostate cancer, but I also work with other cancers—metastatic, advanced, and progressed prostate cancer.

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