Posted: Apr 10, 2018
Tags: Felix Feng prostate, Felix Feng UCSF, prostate cancer, prostate cancer doctors, prostate cancer genomics, prostate cancer information, prostate cancer oncology, prostate cancer patient stories, prostate cancer recurrence, prostate cancer research, prostate cancer screening, prostate cancer support, radiation therapy, Uncategorized,
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.
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.
Dr. Feng: Very personal.
Dr. Snuffy Myers talks further about CT scans and cancer risk.
Posted: Sep 20, 2018
R.’s husband had prostate cancer surgery.
She spoke with Prostatepedia about their struggles with erectile dysfunction (ED) before and after surgery as well as her own advice for caregivers.
R.: His primary care physician did a yearly PSA test. My husband’s father had had an aggressive form of prostate cancer in his mid-50s. He had radiation and did survive. She knew of the family history, so she ordered the PSA test. When it came back elevated, she referred him to a urologist who then did another PSA in his office. It was further elevated. The urologist wanted to do a biopsy. We were hesitant at first, but because of his father’s history, we decided to do it. About a week later, we found out about the cancer.
R.: My husband J. was actually fairly calm. He said he figured he would get it eventually because of his father’s history. I was pretty calm about it too. I’m not even sure why. We had no idea how complicated prostate cancer can be. We were pretty innocent.
R.: He did a little bit. We were older; J. was 69 when his cancer was diagnosed, so we already had some difficulty because of his age and blood pressure medication, but nothing major.
R.: He had a robot-assisted, nerve-sparing radical prostatectomy in April 2016.
R.: We did explore radiation. We saw two radiation oncologists and one surgeon. We were going to go with radiation at first. The radiation oncologist had J. fill out a self-evaluation form that asks about the man’s urination pattern.I questioned his answers because our bathroom is right next to the bedroom. The urologist had him fill out another one during a follow-up visit, and based on those results he ordered what he called a uroflow test.
We talked about it with the second radiation oncologist and realized that because he already had some issues with urinating, probably from prostate enlargement, that we would have to go through this entire rigmarole of a transurethral resection of the prostate and hormone treatments before he could begin radiation. Based on that discussion, we went back and chose surgery.
R.: They all did. The urologist did a good job of it. He went through each option and talked about the potential for ED with each. Then, when we talked with the surgeon, he was very emphatic about it based on my husband’s age and the fact that he had preexisting ED issues. He was really emphatic that we may come out on the other end with a lot of issues. We went in pretty prepared.
I had done a lot of research. J. had talked to a few men he knew. We knew from the get-go that his penis might be smaller, that he could have trouble getting an erection and maintaining one and so on. We talked about it and agreed that we would just deal with it.
R.: The surgeon might have mentioned this; I truly can’t remember. My husband’s father had had a vision problem from taking Viagra (sildenafil), so we really didn’t want to do anything like that if we didn’t have to. I had been reading about Kegel exercises. I tried to talk to my husband about that for the incontinence, but then I learned that Kegels were good for ED. Other than the medication, the surgeon didn’t suggest anything.
R.: I have to be honest. That was the most frustrating part. Both the surgeon and the urologist said, “We’ll help you with ED afterward,” but we realized what they meant is, “We will write prescriptions for whatever you need” —Viagra (sildenfil), MUSE (alprostadil). After my research, we were more interested in a full penile rehabilitation program and neither one of them mentioned that. I don’t know if that’s universal or if it was just because we’re in a small town.
R.: It was interesting. When the catheter was removed, my husband was eager to test the waters. We were able to have some form of intercourse. His penis was smaller and it wasn’t quite as firm as it had been before. It was enough to have intercourse, but afterward, there was a huge, huge amount of bleeding.
We contacted the surgeon and he said not to worry about it; that it was no big deal. He related it to the bladder and the urine. I just couldn’t seem to get him to understand. He said no limitations. Go ahead.
We did it again. And again, my husband had just a horrible amount of bleeding.
Finally, I was able to get the surgeon to understand that this was related to sexual activity. Then he said, even though he hadn’t heard of it before, he wasn’t concerned. He said to wait for about a week and see what happened. It did heal. It was somehow related to the tissues related to orgasm or erection.
R.: It was. My husband is very sexual, so it was hard for me to say no to him. Let’s not do anything until we find out.
R.: No. Just the bleeding.
R.: It worked out on its own. In fact, when we talked to the surgeon about the bleeding, he asked if we had done anything like Viagra (sildenafil) because he had written a prescription for it. We didn’t. We didn’t have to try any of that. He did do the vacuum erection device to oxygenate the tissues so that they would have as much as they needed to heal. That was the only thing we used.
R.: Yes. I’d read that after surgery the penis can be smaller. The vacuum erection device helped with expanding the girth. It was helpful in that way. It was encouraging for him because he could see this enlargement that he might not have seen without it.
We didn’t use it for intercourse, though.
R.: Most important was to make sure that I supported him and guided him through this.
One thing we experienced was a little bit unusual. When he came home from the hospital, the patch that holds the catheter tubing to the thigh completely came off. There was nothing holding the catheter tubing to the thigh. We were intensely concerned and worried about not having any tugging. Those first 12 days before the catheter was taken out we had to keep that together. We learned later that his thigh should’ve been shaved as part of pre-op, but it wasn’t.
I have a background in nursing from about 30 years ago, so we felt fairly comfortable with me helping with that. I also helped him shower. Then afterwards, he would lay down on the bed. I would apply patches that I bought from a nearby medical supplier.
It was a very intimate period of time. J. found it stimulating from a physical perspective. Every day I was touching him both in the showering and then in getting his catheter tubing patch put back on. We had an intimacy that we might not have had. He was really comfortable with me doing it.
R.: Yes. It was a nerve-racking time for me because I was the one who had to be sure that we got the tubing attached. But it also had an intimacy—that he would trust me like that. It created this full experience that was beyond just having surgery.
R.: It was. I mean, I wouldn’t recommend it, but it definitely moved us into a whole different space.
R.: We had no issue between us at all. We talked about it. We’re both really private people, so talking with anyone else initially was really just beyond anything I could think of doing.
But later, I did need that kind of support. When I researched prostate cancer, I found irreplaceable resources: Us TOO, International (an organization that is perfect because they are devoted to prostate cancer specifically), and from their site, I learned about Imerman Angels. They offer one-to-one support, not only for people with any kind of cancer, but also for spouses or caretakers. That was life-changing. I met a woman whose husband also had prostate cancer surgery. She got it. I could tell her about the bleeding. I could tell her about my worries about incontinence, especially during intercourse. She became a lifeline for me.
R.: It could be anything I wanted. I was more interested in doing email. She lived in another state but was in the same time zone. She was open and honest and I was open and honest. It was just a relief.
R.: It was. I think later, as I got more comfortable and as we moved through things, I would’ve enjoyed a women’s group. We live in a small community and there isn’t anything like that here.
I hope to eventually create a women’s group to give back.
My husband and I are also writing a book. Part of what I want to put in the book is an honest discussion about the intimacy issues we went through. It helped me to read other women’s stories. It makes me feel a little bit more courageous about sharing.
R.: Exactly. We didn’t tell anybody in the beginning that he even had cancer, but when we did start talking about it, we found that people had a tendency to dismiss it. Oh, you’re lucky. It’s just prostate cancer. It’s a quick fix. Nobody talked about the intimacy issues, because that’s embarrassing. There was not only this wall of what we couldn’t talk about, but there was also the perception that prostate cancer was just no big deal. He could have his treatment and we would be done with it and should just move on.
R.: Exactly. Part of what I want to do is educate people about PSA testing after treatment. This testing lasts a lifetime. That it isn’t just over and done with.
R.: My greatest encouragement is to communicate openly with each other from the beginning— through the research, treatment and post-treatment. Perhaps start with something that isn’t quite as intimate as ED. I began with general research (basics of what a prostate is and what it does), then moved into the different treatment options and side effects. I sorted through everything (in books and online) and shared the information I anticipated he would want to know. We then covered specific topics in more depth together. By the time we got to ED, we were able to talk about it more easily. I’m the one who works a lot with the computer, so this was natural for us. I’ve always been the one to manage the medical records and medications, etc. I anticipate this might be the case with other couples.
R.: Yes. I’m now ready to have a larger group to provide that kind of support. I’m trying to build up my courage a little bit to do it. I’ve done groups before with online journaling groups and then in-person journaling groups. To step out and organize a group for women is a bit daunting. I’ve had good support from Us TOO, International, both through their online women’s forum and directly from several women who facilitate groups, as well as the program director.
R.: It took some time getting here. That’s why it feels so important to do this interview and write the book. We absolutely have to be able to talk about this.
At one point I was talking with my husband about Imerman Angels for men with prostate cancer and my husband said, “I don’t need support; I’ve got you.” I said, “That’s true. You do. But I don’t have anybody.”
I want to remind women that we need support too. A lot of it does fall on us: to do the research, to make sure they’re eating right, and that they’re doing all the things they need to do. We can wear out.
What was interesting is that before the surgery I thought, “It’s not going to be any big deal to me if he has ED. I’m concerned about him and his reaction, but I’ll be fine.” Then I realized after the surgery that it was more important to me than I thought. That we would lose that kind of intimacy and sharing. That was hard for me, too.
R.: This was truly an important topic, even though I’d thought it wouldn’t be. That’s where that communication comes in: talk about it from the beginning. Start with what’s less threatening. Then by the time you get to something that feels as big as ED, you’ve got this foundation built up.
R.: Exactly. My husband is a contractor. He saw all this like building a house. It was all very structured and step-by-step. I learned to present things to him in his language. Not how do you feel about this, but what do you think about this? I’ve looked up this research. What do you think about it? I tried as much as possible to approach him more logically than emotionally because that’s how his mind works.
R.: If their insurance covers it, I would go anywhere, do anything, visit with anybody, before you do anything. The more informed you are from more specialists, the better.
R.: Absolutely. It gives you confidence going in. We found out that the penis can become smaller after surgery by talking with some men that J. knew. We knew going in that that’s what we’d be dealing with. If we hadn’t known, we would have been stunned and lost.
Dr. Snuffy Myers talks further about CT scans and cancer risk.
Posted: Sep 20, 2018
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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.
Brian M: Yes, it does.
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.
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.
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.
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.
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.
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.
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.
Brian M: That’s what we’re trying to do. I’m trying to forward her the articles I’m reading.
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.