Dr. Snuffy Myers talks about the impact diet, exercise and lifestyle can have on prostate cancer, as discussed by Dr. Stacey Kenfield and Dr. Daniel Galvao in the October 2015 issue of Prostatepedia.
Learn more about American Institute For Diseases of the Prostate.
Dr. Snuffy Myers talks about testosterone levels during hormonal therapy, as discussed by Dr. Laurence Klotz and Dr. Daniel Suzman in the September 2015 issue of Prostatepedia.
Learn more about American Institute For Diseases of the Prostate.
Dr. Snuffy Myers talks further about using Taxotere in men who have been newly diagnosed with metastatic prostate cancer.
Dr. Snuffy Myers talks further about inappropriate testing + prostate cancer.
In August’s Prostate Forum, we’re talking about advanced prostate cancer with Dr. Philip Kantoff and Dr. Himisha Beltran.
Here’s Dr. Myers’s introduction to the issue:
In this issue, we’re featuring conversations with two investigators making major contributions to our understanding and treatment of advanced prostate cancer.
Dr. Philip Kantoff has long been one of the major clinical investigators involved in prostate cancer research and is now Director, Lank Center for Genitourinary Oncology, Dana-Farber Cancer Institute. While our conversation with him covers a range of topics, I suspect two are of great interest to our readers.
The first issue involves the impact of statins on prostate cancer. As Kantoff points out, there are sound retrospective studies showing a correlation between statin use and improved effectiveness of hormonal therapy. We now have a potential mechanism for the effect of the statins. From multiple studies, we know that one way the cancer cells can resist hormonal treatment is to take up DHEA sulfate and convert it to dihydrotestosterone. Dr. Kantoff and his team have shown that statins reduce the uptake of DHEA sulfate by prostate cancer, eliminating one potential mechanism of hormone resistance. At this point, enough is known to design a Phase 3 clinical trial randomizing patients to hormonal therapy alone versus hormonal therapy plus a statin. While we await the results of such trials, it certainly makes sense to use statins for their approved purpose–to lower elevated cholesterol in patients in whom diet and exercise are not sufficient.
Both Dr. Kantoff and our second interviewe, Dr. Himisha Beltran, are both heavily involved in using gene sequencing to characterize the changes that can make advanced prostate cancer difficult to treat.
I am particularly interested in the work Dr. Beltran has done to characterize neuroendocrine prostate cancer. This is a form of prostate cancer that has traditionally been difficult to treat. Fortunately, this has been a relatively uncommon form of prostate cancer.
However, as the intensity of hormonal therapy has increased, the frequency of neuroendocrine prostate cancer has increased. In fact, in the laboratory, testosterone removal has been shown to foster the development of neuroendocrine prostate cancer. This is why Dr. Beltran’s work is so important as it has led to the discovery of new drug targets that may improve treatment of neuroendocrine prostate cancer.
Dr. Snuffy Myers talks about the upcoming patient conference hosted annually by PCRI in September.
Dr. Snuffy Myers talks about prostate-healthy recipes from the Mediterranean Diet he recommends in his clinic.
In July’s Prostate Forum, we’re talking about erectile dysfunction, incontinence, and prostate cancer.
We’d like to share one couple’s thoughts on both their struggles with erectile dysfunction after prostate cancer and the importance of support groups.
Read below for our recent conversation with Kathie and David Houchens from Ohio.
Prostate Forum: How did you become involved in prostate cancer activism?
David Houchens: I was diagnosed with prostate cancer in 2001. For about three years, I didn’t get involved with the support community. I figured that since I’d spent 35 years in cancer research, I didn’t need to know anything more.
Then my PSA started rising after my surgery. It wasn’t rising rapidly, but it was going up. I had done some searching on the internet and came across Dr. Myers’ website. Because of my career in cancer research I was familiar with Dr. Myer’s outstanding reputation in the field. I contacted him in late 2003 and started seeing him shortly after that.
Around that time, I started going to an UsTOO support group here in Columbus that meets at Ohio State University. I felt that I could probably help some of the newly-diagnosed men understand what was going on. I gradually got involved with that group on a regular basis. I was not the leader, but I was helping the leader keep the group moving. I’ve been doing that since 2003.
Kathie Houchens: I would say that our first visit with Dr. Myers resulted in a jaw-dropping hour of: “How does he know so much? How can I absorb all of this at one time?” I couldn’t, but fortunately later that year we went to Burbank, CA to the PCRI conference. (See www.pcri.org) Besides attending the lectures by the best doctors and researchers in prostate cancer, we met Dr. Myers’s wife, Rose Sgarlat Myers, who was cooking a pot of delicious vegetarian chili. The Meyers had just published a cookbook with specific information for prostate cancer health. That was an “ah-ha” moment for me. Instead of experiencing my inner panic as I asked myself: “Am I going to be a widow? We’re too young for this to be happening. I need to do SOMETHING, but what?” I discovered MY focus for the future: “I can cook! Our diet can change. We can eat our way to better health, both of us!”
I had done the reactionary thing, I dropped out of many of my activities. I wanted to stay home with my husband as much as I could, not lose a precious minute with him. That wasn’t necessarily the smart thing to do. So at the conference, I began to arm myself with survival wisdom.
When I got the cookbook, I read it avidly and learned words like arachidonic acid that I didn’t think I could even pronounce when I saw them the first time. I became a disciple. It gave me an active part in Dave’s recovery. It completely opened up a new world of possibility.
Early in the prostate cancer journey, I also felt spiritually bereft and wondered, “Why this is happening to us? Where is God in this?” I enrolled in a program for spiritual formation. At the time, I didn’t know that it would lead to valuable training to become a spiritual director (someone who listens and mentors others who are on a spiritual path.) This experience has prepared me to become a facilitator for the prostate cancer women’s support group. Listening beneath the noise that our minds and emotions create when we are dealing with the anxieties of a cancer diagnosis is key to facing the prostate cancer journey with hope and calm.
I finished that program in 2009, and was able to restart a women’s support group, and it has been growing ever since. We meet side-by-side with the men’s’ support group once a month. We have a pot-luck picnic at our house every August where we encourage everyone to bring a prostate-healthy dish. The Myers’ cookbook is a great source of recipes!
As a group of women, we share laughter and tears, honesty and hope. Any topic is open to discussion. We get a good turnout for the monthly meetings and the women are generous to share their talents and expertise. A couple of them have been nurses or social workers. One is a tai chi instructor. Several are university professors. Our time together is rich.
For the past several years I have led a support group session for women at the PCRI conference in September. What I found out and have continued to find out is that when you get women together (at a national conference), they are energized to go home and start their own groups. My passion and project now is to take the knowledge and experience of the Ohio group, as well as the wisdom from other successful women’s group leaders around the country, and package it so that newcomers can duplicate it, or at least have some guidelines and suggestions for organizing a new support group in their own region. (We’ll look for UsTOO (http://www.ustoo.org) to help with this in the near future.)
Can you talk a little about the presentations on intimacy you give to support groups?
Kathie Houchens: Our presentations both at PCRI, at UsTOO events and at support groups in Ohio and Florida have been enthusiastically received. We usually start with the question, “What is intimacy?” because people’s idea of intimacy can vary widely.
In our experience, when intimacy issues arise, men tend to not come forward about it, but women will. Sometimes men will come (to a forum on intimacy), but often it takes their wives to drag them.
In our local support group, we have a wide range of ages and a wide range of lifestyles. In our women’s group, we’ve gotten to know each other well enough that there is a level of trust so that people will be very honest about what’s working for them and what’s not working for them.
What would you say to a couple facing intimacy problems after prostate cancer?
Kathie Houchens: Start with communication. How can the topic be broached? What’s important to you? What would improve your situation right now? What is causing you frustration? Where can I find help and hope?
Women don’t always understand the mechanism of how men’s bodies operate. Something like leaking urine during a sexual encounter can be difficult to handle. It’s an unpleasantness they don’t want to have to deal with. So we start by re-educating and by sharing suggestions of what can be done, how to “work around” a problem if this is a common occurrence.
And women are not always aware that men can lose their sex drive, especially when they’re on hormone ablation. As Dave was fond of saying when he was on ADT, “Not only do I not care, I don’t care that I don’t care.” One group member is able to joke about it saying, “I am living with my brother and he isn’t house-trained yet.” The thing is, that desire and that interest can come back. Some women think it’s gone forever, but then they hear somebody say, “We went through that and we’re back to okay again.” You may be able to deal better if you know it may be a temporary loss.
Are there any online resources you would suggest?
Kathie Houchens: At the presentations we make we give out a list of books and other resources. Dave also emails a list of books and web sites to newcomers to the support group. Many of the books recount personal stories people have written about their prostate cancer journey. It can be helpful to read about how others have coped and survived.
Every individual is different. What may be important to one person is not necessarily important to others. Intimacy issues are, obviously, deeply personal. Within a support group like ours, there may be a man in his 80s whose wife has died. Sexual problems are not a prime concern for him. But the 43-year-old man with a wife and young children might be highly motivated to keep his sexual function at the best level possible. Making resources available (by loaning books locally) or directing people to titles and authors, we hope folks can find some real help.
Dave Houchens: It would be great if every man diagnosed with prostate cancer each year went once to a national patient conference like PCRI or an UsTOO event. Or if every man went to a medical oncologist specializing in prostate cancer, they would realize the world is a lot bigger than what most of them are experiencing. But we know that most men will not be doing that. They just don’t feel comfortable going that far from home, or they can’t afford to. So we do what we can to bring the conference information and the monthly newsletter information and links to Dr. Myers’ videos to the attention of the group.
Kathie Houchens: Some men are just looking for a quick answer. It’s like you’ve got a cavity in your tooth: fill it and let me be gone. I wish it were that simple, but with prostate cancer it is a lifelong challenge and knowledge is power.
Talk to me a little bit more about the role that you think support groups play, both for a man with prostate cancer and for his partner.
Dave Houchens: Support groups offer education, support and advocacy. Even though UsTOO has more than three hundred support groups around the country and overseas, many of the groups are not that active. A relatively small percentage of the 230,000 plus men diagnosed each year with prostate cancer end up in a support group. Just as men won’t go to the doctor, they won’t go to support groups. Either because they think, “I can handle this,” or, “I had my surgery. I had my radiation. I’m cured.”
But for those who do come, the support group is invaluable. They’re able to talk with each other about treatments and side effects: incontinence, erectile dysfunction, and whatever else is on their mind. They talk about what has worked for them, or what hasn’t worked and offer suggestions. Many of the men that do come, continue attending for years even though they may not have active disease. It becomes a fraternity of sorts.
Everybody knows somebody who needs information about this disease, so we hope that those willing to come and dig in to become informed will take their knowledge out into the community.
Support groups should not be giving medical advice, but they often invite speakers who are physicians or other professionals with a link to the medical community. The Q and A sessions open up options that men might not have known about before.
Kathie Houchens: A support group gives wives and partners a place where they can talk and ask questions about the things they don’t understand or what they see going on with their husbands. They often think they’re all alone and nobody else will understand what they’re going through. But then they find themselves with 10 or 15 other women who maybe haven’t exactly experienced what they’re dealing with, but they’ve had some similar experiences. At the very least, we’ve all gone through the shock of the prostate cancer diagnosis. And, of course, we can always learn more about our nutrition.
I’ve lived in Columbus, OH for over 35 years. During that time, I’ve belonged to music groups, professional groups, Girl Scout groups, church groups. And now, people are turning up at these prostate cancer support groups whom I’ve known from all of these other groups. It makes me so aware that prostate cancer really touches everybody sooner or later.
In the women’s group, we don’t generally have formal programs. But three or four times a year the women’s’ and men’s groups meet together to hear a speaker. Last Fall we had a panel of specialists talk about sexual issues. This is a topic that we address once a year. With a constant influx of new people, the intimacy issues session is always well attended, and gives us fodder for opening discussions later on. We talk about the kind of problems that can come up as a result of the treatments.
I’m always amazed when I go to conferences and find there are people who are searching and desirous of a support group and there just isn’t anything in their local community.
For the women?
Yes, especially for the women. I met a woman at the PCRI conference last September who sat there and wept because it had been eight years since her husband was diagnosed and she’d never had anybody really understand what she was talking about, especially when it comes to intimacy. Many women wonder: “Do I ask for some intimacy, or do I just hold back because I don’t want to make my husband feel bad?”
Learning how to communicate around sensitive issues is crucial. In a support group discussion about intimacy after prostate cancer treatment, people can ask questions and share. When women find hope and encouragement, as well as vocabulary and understanding, it makes one-on-one discussions with a spouse or partner easier.
What do you think about the role of online support groups versus in-person support groups?
They’re totally different. Some people would rather go online and ask their questions because they can remain anonymous and they never have to really reveal anything except the question. They get a lot of varied responses.
Some people need a more personal experience. Sometimes they need a hug or a smile. They are glad to meet somebody else in their community who has the same doctor or has had the same treatment. There are some commonalities that open doors to support on a different level than the experience an online group offers.
Dave Houchens: A lot of men will look for online and telephone support, because they don’t have to face other people. A lot of men don’t like to do that. They think, “I don’t want to get all touchy-feely in a support group, but I think what we see is that a lot of men have only been dealing with urologists or their radiologists who frequently don’t have time to spend on emotional and relationship issues. When they come to the support groups they’re amazed to hear about a wide range of experiences, and to find resources for more complete answers. If your urologist is not answering your questions or has not given you the information you want, it is OK to get another opinion.
I think it’s up to the individual to be a little assertive, but the majority of patients are not bold about their needs. They take what the doctor tells them and assume, “Well, the doctor told me this, so it must be right. I’ve known him for years.” That may work out fine for men who have low-grade disease, but those that have Gleason 8s, 9s, or 10s need to be talking to somebody who specializes in prostate cancer and can give them the latest information.
There is so much to learn. New ideas, treatments, and drugs are coming along all the time. A support group gives men and women a chance to stay informed, to find friendship and encouragement, and to take away tips for healthy living. It’s all good.
Dr. Snuffy Myers talks further about CT scans and cancer risk.
In July’s Prostate Forum, we’re talking about erectile dysfunction, incontinence, and prostate cancer with Drs. Abraham Morgentaler, Peter Chang and Jean-Francois Eid.
Here’s Dr. Myers’s introduction to the issue:
In this issue, we’re featuring conversations with three urologists who have elected to focus on erectile dysfunction and incontinence. Between them, these physicians have treated thousands of patients. I was gratified to see the extent to which each paints the same picture of the various treatment options available to you.
The bottom line is that both erectile dysfunction and incontinence are very common in men with prostate cancer. The good news is that more often than not, there is something your doctor can do about it. Suffering in silence is pointless. At the very least, talk to your doctor about what is going on.
I do have several points to add to the comments made below by our featured physicians, though. Viagra and medications like it are indeed quite effective. As you’ll see, each of the physicians we spoke with stresses the high cost of these medicines. Depending on the pharmacy, ten 100 mg
Viagra tablets or 20 mg Levitra tablets cost between $350-$400. Ten 20 mg Cialis tablets cost between $400-$450. Many insurance companies do not cover these drugs at all or will cover an inadequate number of pills. Many men who might benefit from these drugs simply cannot afford them.
There is an alternative. Revatio is a medication used to treat pulmonary arterial hypertension. It also contains sildenafil, the active ingredient in Viagra. Revatio is available in generic form as a 20 mg pill. When I did a cost analysis, I found that Sam’s Club and Walmart often charge under $60 for 90 pills. This works out to $0.67 per pill. Five Revatio tablets are equal to a single 100 mg Viagra tablet. Revatio costs $3.33 compared to about $40 for the 100 mg Viagra. While the generic sildenafil is chemically identical to Viagra, it is FDA-approved for pulmonary hypertension.
So, prescribing it for sexual function is considered off-label. However, in the United States, prescribing drugs off-label is allowed.
As each of the physicians we spoke with point out, the loss of sexual function from radiation develops slowly after radiation therapy and can take up to five years to fully manifest. It appears that radiation alters the blood vessels going to the penis in a way that results in a slow decay in the ability of the arteries to open up and increase blood flow. As Viagra and related drugs work by improving blood vessel relaxation, these drugs are often quite effective in treating sexual dysfunction after radiation.
There is also some evidence that daily low doses of these drugs are more effective than taking a single large dose at the time of sexual activity. They may even slow or prevent the slow progressive damage seen following radiation, especially if they’re started early. Again, until recently, cost has been a huge issue for many men. The availability of a generic sildenafil in the form of Revatio offers a solution.