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Us TOO: Mark Slaughter’s Prostate Cancer Story

Mark and Denise Slaughter talk about their experience with chemotherapy for prostate cancer.

DSCN7750 (ed) Denise & Mark

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The C word. No one can imagine beforehand the horror of being told you have cancer.

My problems began with urinary troubles: middle of the night urges, frequency, and the inability to go, start, or finish a urine stream. My primary care physician recommended a urologist.

My urologist was awesome and earned my confidence and trust with his approach. He explained he was trying to see a picture rather like a jigsaw puzzle, but in order to see the picture clearly, he needed more pieces of the puzzle. He convinced me to let him do a digital rectal exam (DRE).

The result was not good. On a 0-10 scale, 0-5 would indicate no problems and 5-10 would range from concern to panic. He said mine was about a 7 or 8. Very smooth everywhere, no evil nodules or lumps, but way too hard. Unlike the softer part of your thumb near the palm of your hand (like it should be), it felt like the harder area of your thumb where the bone is located. It was definitely a reason for concern.

Next, he talked me into a PSA test. I was one of the men who, about seven or eight years ago, read the controversial studies about PSA tests and unreliable results, and I took them to heart. Many organizations were saying PSA was overrated and shouldn’t even be used. So, I had stopped letting doctors test mine. My PSA was tested and came back very bad. It was 259. To see more of the picture, my doctor needed to do a biopsy. He respectfully listened to all of my logical arguments.

No number of needle probes will show you enough of the prostate. Too many and you can damage a fragile little organ. Besides, you would access a sterile body part by going in through a sewer. He held his ground and said he really needed this important piece of the puzzle. My wife and I thought about it overnight and agreed to let him do the biopsy.

My biopsy procedure was a piece of cake. I was given an antibiotic before the procedure. An ultrasound device accurately guided the doctor, and he was able to get 12 samples: 6 from each side of the prostate. Of the 12, I was really only hurt by one of them. Each felt like someone quickly poked me with a pencil. I heard the device click. I required no pain medication and passed a little blood during urination for a few days afterwards.

Then the results came. Of the 12 needle biopsy locations, nine were found to contain high-grade cancer. Of those nine, eight had a Gleason score of 8, and the last one was scored at 7. The range for cancer is 6 to 10, so we knew this was a bad score. It meant the cancer had spread beyond the prostate gland. My doctor said that the next step was to get CT and bone scans that, together, would show us where the cancer had spread in my body. My next stop was the hospital for the scans. The procedures were simple and easy enough. The results were another story.

February 8, 2018 is a day emblazoned in my memory, a day I will never forget, the day time stopped. That was the day I was told I have the big C word: I have cancer.

My doctor was tactful but did not mince words. The CT scan showed cancer in my lymph nodes, in my groin, and up my back on both sides of my spine. The bone scan showed lesions in four places on my pelvis and six places on my ribs. The tests all showed that I have advanced Stage IV metastatic prostate cancer. There is no cure. But we can manage it with hormone treatments and chemotherapy. With no treatment, I might only have a couple of years to live. With treatments, perhaps three to five years.

Upon hearing this news, my first thought was: I am dead. I had been standing next to my wife Denise, who was seated at her desk as we listened on the speakerphone. I collapsed into a seated position on the floor and reached out to catch Denise as she fell out of her chair. We crumbled to the floor together, sobbing and wailing with wrenching heaves of our chests. Squeezing each other as though life had ended that very moment. We embraced. We cried. We cried. We cried. Time stopped.

We laid together in a heap on the floor for a long time. By the time we climbed to our feet, we could hardly breathe. My face hurt from all the tears. Our eyes were swollen, our faces red below our eyes and otherwise colorless as though life itself had drained from our faces. It was like our lives were over.

My doctor referred us to an oncologist. We couldn’t stand him. He was rude and dismissive as he explained the chemo treatment plan and the poor prognosis for the remainder of my life. It is an understatement to say that he lacked a good bedside manner. Several friends immediately recommended we get a second opinion.

A friend of mine, and my former primary care physician when we lived in Atlanta, told me to forget that guy and get myself to another center. I did just that. I did just that and found an incredible doctor who was instrumental in the CHAARTED study that showed excellent results of early chemotherapy treatment combined with hormone therapy for the treatment of advanced metastatic prostate cancer.

My first appointment with this doctor was an education in prostate cancer. He explained the course of the disease, different methods of treatments, and answered each and every question I had. He described the treatment options as the tools in his toolbox. Whenever one might fail to produce results, he would reach for another one. He explained new drugs, such as hormone therapy, and he explained chemotherapy. Some people prefer chemo because it is six treatments and you are done. Other people would rather take pills for the rest of their lives. No study showed any real difference in the outcome of chemo versus hormone therapy. At first, I was going to go the hormone therapy route. I was terrified of chemo because of my preconceived notions and the horror stories from people I had known who went on chemo and suffered horrendous side effects before dying painful deaths.

But there was a major snag in my getting approval for hormone therapy. Because I am on Medicare and have the Part D drug coverage, I was not eligible for any financial aid from the pharmaceutical companies or from any other charitable organizations for hormone therapy.

Consequently, it was going to cost me in the neighborhood of $5,000 per month for the rest of my life. This was a huge blow to overcome mentally and financially. There was no way I could afford that.

My doctor reassured me again that the results of chemo are as positive as those from hormone therapy. Medicare would pay for the chemo. Because of these two considerations, I chose to take the chemo. Believe me, nothing about taking chemo comes close to the fear and angst of anticipating it.

I am currently undergoing chemo. I am through the fourth of six cycles of Taxotere (docetaxel). The biggest side effect for me has been the infamous cancer fatigue, especially during the first week after chemo. It takes about all the energy I have to walk from my chair to my bed to take a nap.

My doctors gave me Compazine (prochlorperazine), which prevents nausea and has worked extremely well for me. I also take Lupron (leuprolide), which has caused some hot flashes, mostly in the late afternoon and evening. Sometimes

I have night sweats. Cramps of my ankles are a bothersome little issue several times a week.

One thing I have not had at all is neuropathy. My wife read about studies done in Canada, the United Kingdom, and France that indicate icing of the fingers and toes during chemo infusions prevents any changes to fingernails and toenails as well as neuropathy. I asked my oncologist and he said although there are no definitive studies in the United States that show results, he didn’t object to my doing it. My wife has faithfully kept my hands and feet iced during treatments. It’s not pleasant, but it’s certainly tolerable and offers a big pay-off. To me, it’s like a kid playing in the snow with no mittens.

Each of my sessions lasts about 1.5-2 hours. Once in a while, when it feels too cold, I take my hands or feet out of the ice for a short break. Overall, my treatments have been far less of an ordeal that the initial fear of treatment.

Another side effect: hair loss. I have had heavy, patchy hair loss on my head that started about 13 days after my first chemo treatment. The afternoon when large patches of hair began falling out into my hands in the shower, I decided to take action. The next morning, slowly, deliberately, I dressed, collected my wallet and keys, walked to the garage, got in the car, drove to the nearest barber and got a buzz cut. I didn’t think about it. I just did it. And it was one of the best decisions I have made. It is far easier to manage quarter inch long hair than patches of messy hair. I would say to any guy, wait and see if your hair begins to fall out, then just accept the fact and manage it.

As for sexual function, I am 66 years old and have suffered from erectile dysfunction for six or seven years. Hormone therapy is medical castration. The result is loss of sexual function. I rarely have any kind of erection, and even the size of my genitals has shrunken somewhat.

But, with a loving partner, these things have not been so hard to accept. I still have the good feelings two people share in intimacy. I would rather be alive than fully-functional, sexually. I do admit my history has made this easier to accept than it might be for some younger men. The key here is perspective. Some choices in life are just hard. You have to decide what matters the most.

The biggest positive about chemo is that you do it and it’s over forever. For me, six cycles of three weeks, then never again. This compared to a lifetime of multiple pills on a daily basis, worrying all the while about how long they might be effective.

On the down side, you have to get your head around walking into a room feeling good and letting them inject you with strong chemicals that will make you feel bad. It’s rather bizarre. I live about 200 miles from my cancer treatment center, so the car trip and hotel stay give me way too much time to let bad thoughts get in the way before each treatment. Again, it’s all about controlling your thoughts and attitude. I know it sounds trite, but holding onto a positive attitude really matters.

The routine at each treatment is: a lab test for blood markers, doctor appointment, and chemo infusion. If my blood looks good, the doctor approves the chemo, then the chemo is prepared and infused. I know it’s working because the blood tests show positive results. My PSA has dropped from 259 to 20, 5, 2, and 1.7 over the first 4 treatments. Similarly, my testosterone has dropped from around 500 to less than 20, which the doctors consider insignificant. They tell me my testosterone level is that of a prepubescent boy, which is good because loss of testosterone starves the cancer.

My oncologist has not even discussed AR-V7 biomarkers with me because, so far, my cancer has been responsive to chemo. We have had some general discussions about castrate-resistant prostate cancer and that there are other options for continued hormone treatments after the Lupron (leuprolide), should it become ineffective.

I have a wonderful support group. First, my loving wife of 46 years is a registered nurse and the best advocate anyone could ever ask for. Second, I live in an active adult community of residents over 55. So many of my neighbors have been supportive and shared their own experiences with cancer. Third, I have a strong faith. My church friends have been amazing with calls, cards, food, gifts, and time for visits. It has been humbling to see how many dear friends I have and how supportive they are in my time of need. I think this is one of the biggest keys in getting through cancer.

I have to mention some of the person-to-person connections I have been provided with through Us TOO have helped greatly in terms of information and support.

My advice to anyone facing chemotherapy is to first go to the nearest national cancer center, get a top-rated oncologist who specializes in your particular cancer, ask questions, listen to suggestions, and make a shared decision with your oncologist and caregiver. Ask your team of doctors and pharmacologists for all information about drugs and their most common side effects.

Each person’s cancer is unique and your responses to drugs will also be unique.

The Grim Reaper follows us all. Most of our lives we ignore the inevitable fact that everyone will die. With a chronic, terminal diagnosis, the Grim Reaper comes up closer behind us. The key to survival is to never look back. Focus forward. Look to the light of day. Focus on the here and now. Enjoy life.

In a strange way, having advanced Stage IV metastatic prostate cancer is a gift. It has changed the focus of my life in positive ways. Because now, more than ever before, I live in the present. And life is more intense, fuller, and more complete than I could have imagined.

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Prostate Cancer + Sexuality

Dr. Daniela Wittmann, an Assistant Professor in the University of Michigan’s Department of Urology, is a psychotherapist, educator, and researcher particularly interested in developing and testing interventions that support couples’ sexual recovery after cancer.

Prostatepedia spoke with her about the issues men with prostate cancer and their loved ones face.

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How did you come to work with cancer survivors?

Dr. Daniela Wittmann: About 35 years ago, I became a pediatric oncology social worker. That really formed my career, because I felt it was such important work. I liked working with cancer patients. I was working with people facing a significant crisis in their lives. There are many families applying their strengths to a challenging life situation and mastering it. It was very inspiring.

About 10 years ago, there was an opening in the Department of Urology at the University of Michigan. They wanted to open a prostate cancer survivorship program and they were looking for a sex therapist. I thought that would be a fascinating area to work in. I applied for and got the job and trained as a sex therapist. The rest is history. It became a passion. I now have a passion for sexual health in cancer.

Are there some issues that cancer patients face that are unique?

Dr. Wittmann: Yes. There is loss and grief. When you’re diagnosed with cancer, you worry about survival. You also worry about quality of life and what you might lose as a result of cancer treatment. That is the first issue every cancer patient faces.

The other issue that everybody faces is the impact on your family. Part of the quality of life is sexual health. I’ve learned that this is not just an issue for prostate cancer patients but for all cancer patients affected by cancer treatment in that area.

Are there some issues that breast and prostate cancer patients face that other cancer patients do not?

Dr. Wittmann: Yes. For most men, prostate cancer is a highly survivable disease. Quality of life becomes a huge topic.

Not so long ago, we analyzed long-term survivorship data in Michigan and found that the three top issues concerning prostate cancer patients were: fear of recurrence, the impact on their families and partners; and the management of long-term side effects. Of those long-term side effects, sexual function was the most problematic.

Do you think that caregiver issues come up more in the prostate cancer world than in other cancers?

Dr. Wittmann: No, they are fairly similar and come up in the same way.

The complication for prostate cancer patients is that the role of the cancer caregiver intersects with the role of a sexual partner. Sometimes, it’s difficult for caregivers to navigate this complex role. For the most part, partners really don’t have anyone to talk to about this. It’s an intimate area of life. People don’t necessarily talk to their friends and relatives about it.

Providers, generally speaking, don’t address it. It becomes an area of sorrow, sadness, and helplessness for partners. Although many partners are good at problem solving and many couples work it out, there are also many who don’t find a solution.

How do you work with prostate cancer patients and caregivers?

Dr. Wittmann: At the University of Michigan our program is designed to address both men and their partners. You can’t really address the men alone because their partners are very involved. Men want them to be involved; the partners want to be involved.

We start with a preoperative education where men who are about to be treated for prostate cancer and their partners come in for a two-hour seminar. Our multidisciplinary team presents information about surgery outcomes, side effects, and rehabilitation. We have a discussion at the end. We have anywhere between 15-25 couples and some single men in the audience.

After surgery, the men and their partners are invited to talk with a nurse practitioner. They get a physical and an evaluation of their functional recovery. Then they talk to me about the support that they need to maintain sexual intimacy as they’re recovering erectile function.

Some are followed on an as-needed basis. Others are followed every few months.

It is really difficult for men and couples to gauge if their own recovery is typical. We can give them some perspective and problem solve together. A small proportion of men asked for more intensive follow-up. Some have preexisting issues either in the emotional or sexual relationship that I can address with sex therapy. A few men are followed individually.

Do you have any thoughts or any advice for men who don’t have access to a program like this?

Dr. Wittmann: Yes. There are some resources that are potentially helpful. The American Association of Sexuality Educators, Counselors, and Therapists is an organization of people trained as sex therapists. They list good sex therapists on their website with a map of the United States. You can click on it and find a sex therapist in your local area.

Malecare has resources for heterosexual and homosexual men with prostate cancer.

If you’re in a cancer center, there may be a social worker who can work with you, or a nurse who has some knowledge about sexual health. Many nurse practitioners are quite well versed.

Any last thoughts for patients?

Dr. Wittmann: People can sometimes get very upset, sad, anxious, and even depressed about these issues, so finding a mental health provider in your area can really help. Some can also help solve problems with sexual health or find qualified providers who can, so definitely reach out.

Don’t feel that this is something you should solve on your own. There are resources out there. If your immediate physician, nurse, or nurse practitioner doesn’t know them, maybe a mental health provider will. Then, go online to find the resources that I just mentioned; these are good, vetted resources.

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Living With Erectile Dysfunction After Prostate Cancer

Steve A. talked with Prostatepedia about his experience with erectile dysfunction (ED) after surgery and radiation for his Gleason 9 prostate cancer.

What was your life like before you had prostate cancer?

Steve A: A hell of a lot better than it is now. I think about and read about prostate cancer daily. I have no symptoms. Never have had any. But I work hard to combat the side effects of treatment and forestall recurrence. Eat right, exercise daily, and try to help others with prostate cancer.

I’m retired. I was a senior executive at a Fortune 10 company. I retired early back in 1998 and moved part-time to a resort community. I played a lot of golf and worked in community projects, including community government, and started a real estate development business.

I moved here full-time in 2001 and noticed that I had a problem with urination frequency. I saw a urologist who determined that I had benign prostatic hyperplasia (BPH) and put me on Avodart (dutasteride).

Then my prescription drug plan dropped Avodart (dutasteride), so I switched to Proscar (finasteride). Later my urologist added Flomax (tamsulosin) to shrink my prostate. I was on Proscar (finasteride) and Flomax (tamsulosin) continuously until 2013. They controlled my BPH pretty well but impacted my sexual performance. My sex life was not as good as it was before that as a result. I had mild ED.

Did you go on any medication for the ED at that point—like Viagra (sildenafil) or Cialis (tadalafil)?

Steve A: I tried them. They worked.

When and how did you find out you had prostate cancer?

Steve A: I had been getting annual PSA tests since age 40 as part of annual company physical exams. The PSA was around 0.4 for years, then increased gradually as I aged. But it was never considered a problem since it was well below the magic 4.0 considered “normal.”

Then, in 2013, my PSA suddenly doubled to 5.4 from 2.7 in 2012. I had it checked again and this time it went up to 6.6 in only a few months. So my GP, who recognized that PSA velocity (doubling time) was an indicator of a potential problem, recommended a biopsy. I found out that finasteride cuts PSA roughly in half, so my PSA was actually 13.2. This shocked me. Should I have had a biopsy years earlier? Could I have cured my cancer if I’d found it earlier?

So you had a biopsy?

Steve A: I got a biopsy from my local urologist. The Proscar (finasteride) had reduced my prostate size quite a bit, so I only needed to have six cores taken. It was painless. Pathology found 40% prostate cancer in one core and 10% in another core. The others were clean. My Gleason score was 4+4=8. I had a second opinion done by prostate cancer doctor Jonathan Epstein at Johns Hopkins; he upgraded my Gleason score to 4+5=9.

My urologist talked about what I should do. Was I a candidate for active surveillance? He didn’t think so. Turns out that was a huge understatement!

He said I was a candidate for either radiation or surgery due to my age (69 then) and otherwise good health.

So I saw a couple of radiation oncologists and a couple of surgeons. In addition to seeking a cure, I was concerned about three things: ED, hormone therapy, and dragging out the treatment process. I’m the kind of person who likes to get stuff done my part. I now question my decision to have surgery since the cancer had already escaped the prostate. Should the urologists or I have known that?

When you met with these different surgeons and radiation oncologists, did any of them speak to you about ED after treatment?

Steve A: I asked both surgeons if they could do nerve-sparing surgery because I was concerned about my sex life after treatment. The local surgeon said, “No, I wouldn’t try it. With Gleason 9, I’ve got to go pretty wide on the margins to ensure I get it all. I can’t promise that at all.” He was totally unconcerned about ED. I didn’t like his bedside manner!

When I spoke to Dr. Epstein he said he would do nerve-sparing surgery and gave me printed handouts which addressed all facets of what I could expect post-op, including incontinence, ED, etc. I liked his can-do attitude and was impressed with his credentials and Johns Hopkins’s reputation in the field of urology.

What about the radiation oncologists?

Steve A: I don’t remember them saying anything about ED. But they both agreed that hormonal therapy would be necessary before and after radiation therapy. That turned me off completely. I had read about the side effects of hormonal therapy and wanted no part of it. However, in addition to talking to people, I do a lot of reading. I read that you’re going to have ED with surgery, but that it’ll go away after a year or maybe two. ED with radiation comes later on.

I decided I’d rather have ED up front and get it over with than have it come two or three years later. So I went with surgery.

What happened after the surgery?

Steve A: The day before surgery, the doctor changed his mind and suggested that I have open surgery rather than robotic. He wanted to be able to feel the tumor, margins, and lymph nodes to determine which to resect. I was a bit concerned about recovery from open surgery, but he convinced me it would be no worse than robotic.

He resected about 10 lymph nodes and found nothing there. Pathology ended up very poor: positive margin at the base, seminal vesicle invasion, and extracapsular extension. It was serious because it had already escaped the prostate. I was downgraded from stage pT1c to stage pT3b.

When the surgeon came in to talk to me about my prognosis, he was not happy and said, “You’re going to be fighting this for the rest of your life.” Turns out I was one of the 10% with a high-risk case. I asked him how long I had to live. He said I’d still be alive in 10 years and sent me a nomogram that scored each of my risk factors in terms of life expectancy. I hope he was right!

So obviously, I had ED after surgery. I had incontinence for a while too, but it was mild. I wore one pad a day for 13 weeks, but haven’t had much of a problem since. I had no complications from surgery. My wife and I flew to Baltimore. She stayed in my recovery room. We flew back home three days later. The catheter and stitches were removed by my local urologist 10 days later. I was playing golf three weeks after the surgery. I’ve been unable to have any sex ever since. But subsequent radiation treatments are probably the main cause of my ED now. I’ve been fried.

Were you able to talk to your doctor about it?

Steve A: Yes. He said you have to use it or lose it. Then I had recurrence (rising PSA) so I no longer conferred with my surgeon. Only six months after surgery, my PSA started going back up again. I needed hormone therapy and radiation after all! In mid- 2014, I had 38 fractions of salvage radiation therapy (SRT). I was also on Lupron (leuprolide) for six months. That completely destroys your libido anyway. I didn’t even have any desire for sex.

Were you more worried about the recurrence than any ED?

Steve A: Absolutely. When you have Gleason 9 with my poor post-op pathology, survival—not sex—is all that matters.

I’ve had recurrence twice since SRT: in two pelvic lymph nodes in 2015 and in my right femur in 2017. In 2015, I went down to Florida to have 50 fractions of intensity-modulated radiation therapy (IMRT) to all my pelvic lymph nodes and was on Lupron (leuprolide), Casodex (bicalutamide), and Avodart (dutasteride) for 13 months. Just a month ago, after stopping hormonal therapy, they found a lesion on my upper right femur. I’m now back on hormonal therapy and had stereotactic body radiation therapy (SBRT) in three fractions locally to my femur. I’m also on Xgeva (denosumab) for bone mets.

So far, no cancer has been found in my prostate bed, lymph nodes, or other soft tissue or organs. In that sense, I guess I’m lucky.

I’ve completely forgotten about the whole issue of sex. At night, when you dream, you sometimes think about it and really miss it, but the reality is that my primary goal is to be healthy, happy, and live as long as I can. I don’t need sex for that.

Did you ever seek treatment?

Steve A: I talked to my urologist. After surgery, I used the pump.

Did it work?

Steve A: It was marginally successful. I just wasn’t too keen on it. I thought it was more of a pain than anything else. I didn’t try injections. I tried daily Cialis (tadalafil). That didn’t do anything. The urologist talked to me about having an implant.

I haven’t really given that any thought. Now that I’m back on Lupron (leuprolide), I don’t have the desire for anybody. I’m just totally oriented to quality of life and length of life at this point. Quality of life doesn’t necessarily mean sex anymore.

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Living With Erectile Dysfunction After Prostate Cancer

Tim M. had a Gleason 9 prostate cancer removed by his urologist. He spoke with Prostatepedia about his struggles with ED posttreatment.

How did you find out you had prostate cancer?

Tim M: I had the typical issues that people talk about: urination and a PSA that was increasing a little bit. I had a phenomenal general practitioner, a doctor who really cared. He wanted me to do a biopsy. I was resistant. I said, “Oh, come on, Doc. This must be an infection or something.” Unfortunately, I resisted for about six or seven months, maybe even longer.

Finally, he said, “No, you’ve got to go for the biopsy.” So I went to a top doctor in my area. He did a check and said, “I don’t really think there’s going to be a problem, but let’s do the biopsy.” So I did it. He called and said he was surprised to say that I had aggressive cancer.

What kinds of treatment did you have?

Tim M: I really didn’t have much of a choice. My doctor said I needed surgery right away. He was a leading surgeon with a phenomenal reputation. I had the surgery two years ago.

Did the urologist talk to you before surgery about the potential for erectile dysfunction (ED) after treatment?

Tim M: Not really. He did not really touch on it. We asked him about it at one of the interviews. If we hadn’t asked him, I don’t think he would have really talked about it. I’ll never forget his answer. He said it was 50/50 whether or not I’d get ED.

What happened after the surgery?

Tim M: The surgeon completely removed the prostate. The cancer had gotten out of the capsule, but he thought he got it all because my margins were clean. I was very lucky. He was comfortable that we had it all. I didn’t have any problems with urination. The catheter clogged up one time, which was actually one of my biggest fears, believe it or not.

The catheter?

Tim M: When I was about 17, I went to see a friend who was in the hospital. He had a catheter and he explained to me what they had done to him. It left a burning impression in my mind. There’s a tube where? That kind of stuck with me. That was one of my concerns. I did have some issues with the catheter, but after that, everything was fine except for the erectile dysfunction.

Can you talk a bit about that?

Tim M: Nothing seems to really work anymore.

Have you been able to talk to your urologist about it?

Tim M: He gave me some pills—Cialis (tadalafil) and the other pills. It didn’t help. Then he said to try the injections, which seemed to help a little bit, but not really. He wanted me to increase the dose, but I really didn’t want to do that because of all the warnings: if something goes wrong, get to a hospital right away. The whole deal with the needle and the possibilities of side effects put a damper on things.

Did you talk to him about any other options?

Tim M: He went through all the options with me, including the vacuum and an implant and none of them seemed too attractive to me.

How do you feel about all that?

Tim M: Pretty bad. But you know, as you get older, you begin to accept things a little bit more. I guess you have to. I wasn’t happy about the cancer to begin with. All I can do is do what I can do.

I just turned 70 this month. I also have some cardiovascular issues. I go to the gym. I try to do what I have to do to keep conditions under control as best I can.

My doctor called me at 8:30 the night of my diagnosis and said, “I have to tell you you’ve got an aggressive cancer. It has to come out right away.” There was no light discussion. It’s not like I had a choice. If I had let it go, I would have died.

He was so focused on your cancer that he wasn’t really even thinking about potential ED?

Tim M: Yes, I believe so. That was the priority.

Did you have any problems with incontinence after the surgery?

Tim M: A little bit. I still wear pads, but I barely need them. I just got used to them.

He had suggested that I do Kegel exercises. But it’s weird. Because of my cardio situation, I wind up going to the gym and working like a fool for hours a week, but I just couldn’t get into those exercises. The pads were just too convenient, but that’s pretty much dried up at this point. The only time I have a problem is with stress if I’m exercising or something like that.

Do you have any advice for other men about to have prostate cancer treatment?

Tim M: You have to do what you have to do and deal with what you have to deal with. What you have to deal with might not be too good. There is nothing good about it in my view. My advice is to consider that ED is going to be an issue.

Do you think that more men are suffering from ED than surgeons think?

Tim M: Yes. I do absolutely think that. I’ll tell you something else. It’s a little bit sensitive to talk about, but I’ll just come out and say it. How do you define erectile dysfunction? You know what I’m saying? There are different levels of an erection. Obviously, when you are younger, it’s one way. My question is, where is the threshold? What if you end up with a three-quarter situation? My doctor told me 50% of men have ED, but of the other 50% what in the hell was the quality of what they had left?

Was the erection like what they had before or was it just enough so that they could use it?

Tim M: Yeah, just enough to use. I mean if you’re not going to be able to perform to some degree of quality, why bother?

Also, there’s a secondary problem, which is a psychological issue. When you ejaculate, there’s nothing there.

That must be a bit demoralizing.

Tim M: That was very demoralizing. Some people say, “What’s the difference?” There is a difference. It’s a mental thing. To tell you the truth, my first thought was: “Have I become like a woman? Is this an orgasm that a woman would have?” The physical aspect is not the big thing. It’s how you’re interpreting it and what’s going on inside your mind that’s the major thing.

It changes the whole experience.

Tim M: Thank God this didn’t happen when I was in my forties.

It might be worth going to see an expert in ED.

Tim M: Well, I know all the possibilities. It’s the shots. It’s the vacuum. It’s the operations.

From age 15 to 68, it was all just a natural happening. And now, you’re talking about mechanisms and devices and shots and operations and you have to push a button?

It sort of takes you out of the moment.

Tim M: It puts a whole different perspective on the deal. Men should definitely be prepared for what’s going to happen. I do think more information needs to be out there.

The more men know about what may happen the better they can prepare themselves?

Tim M: Yes. I think where doctors make a mistake, at least in everything I’ve seen and read and everything that the doctor has said to me, is that this is not a binary A or B thing. Do you have ED or don’t you? It’s not like that. It’s more like: do you have no dysfunction or do you have some? Is it the same as before or not? That’s important. My guess is that the vast majority of guys are going to say no.


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Sexual Rehabilitation After Prostate Surgery

Chris NelsonDr. Christian Nelson is a Clinical Psychologist at Memorial Sloan Kettering Cancer Center and liaison to the genitourinary and sexual medicine services.

Prostatepedia spoke with him about his clinical trial on helping men adhere to a sexual rehabilitation program after prostate cancer surgery.

Can you walk us through the trial you’ve been running?

Dr. Nelson: The trial is attempting to help men utilize penile rehabilitation following prostate cancer surgery. Just about every man is going to lose his erections right after surgery. There is hope of recovery. Ultimately, what helps that recovery is penile rehabilitation, which is based on the notion that all men will have difficulties with erections after surgery. Men do not get nocturnal or morning erections, nor do they get erections in a sexual situation after surgery. If that’s the case, the penile tissue can atrophy. When penile tissue atrophies, it’s a little different than other muscles that can be built back up.

Hopefully, the surgeon has done nerve-sparing surgery—sparing the two nerves that run bilaterally along the prostate to the penis, the nerves responsible for erections. If the prostate cancer is not close to those nerves, the surgeon can pry away from the prostate. The surgeon must then stretch, clamp, and pull the nerves out of the way. Then they remove the prostate, and the nerves adhere to the prostate bed. Even though the nerves have been saved, those nerves are injured intraoperatively. It’s that injury that causes the erectile dysfunction or the difficulty with erections.

It can take about 18 to 24 months for the nerves to heal. That’s a two-year recovery period. In that time, if men are not getting either nocturnal or morning erections nor erections in a sexual situation, then that penile tissue can atrophy. The idea is to help men get medication-assisted erections consistently in this period where the nerves are healing.

Which medications do they usually use?

Dr. Nelson: The first choice is pills: the PDE5 inhibitors like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). Those work off of the nitric oxide secreted from the nerves, so if the nerves aren’t healthy and aren’t secreting nitric oxide, then the mechanism of action for those pills isn’t there. For many men after surgery—especially right after surgery—those pills aren’t effective.

For most sexual medicine professionals who do this kind of rehab, the next step is to use penile injections to restore erections. The injections are used every time a man wants an erection. The injection is in the shaft of the penis, toward the base. It’s a very thin needle, so it doesn’t really hurt. For example, after the first injection, we’ve asked men how painful it was on a zero to 10 scale, where 10 is pain as bad as you could imagine. Men generally rate the pain between a zero and two on the pain scale. There’s anxiety associated with it, but after you do it a few times, the anxiety tends to dissipate.

The notion of penile rehabilitation then for most men is to use these penile injections about two or three times a week. The idea is that the injection will pull oxygen-rich blood into the penis, give the man an erection, and keep the penile tissue healthy. In terms of rehabilitation, what men do with the erection is up to them. It can be used in sexual situation or not. The idea is just to have an erection to keep the penile tissue healthy.

With injections, the goal is to get an erection two to three times a week through the recovery period, which is up to two years. The hope is this will give men a better chance to recover erections. We don’t know exactly what will happen. But the data suggests that this gives men a better chance of recovering erections on their own without medications.

Then if they don’t recover erections, they have a better chance of responding to pills, like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). That’s the rehab program.

Now, you can imagine that it’s hard for men to stay on that type of penile program.

How do you help men adhere to the rehabilitation program?

Dr. Nelson: Compliance is difficult with any type of medication, and now we’re asking men to self-inject their penis two to three times a week. Men say that difficulty with erections is a shameful experience. There is fear of entering into sexual situations with ED, and on top of this, the notion of injections causes fear.

Our intervention explains this process of avoidance, and then uses concepts such as why it’s important to recover erections in terms of his or the couple’s values. Maybe he wants to feel like a man again. Maybe he wants to just feel healthy again or whole. If a man is single and dating, maybe he wants to feel that he can still date. The idea is to start with the values and build from there.

Can you walk us through the trial you’ve been running?

Dr. Nelson: The trial is attempting to help men utilize penile rehabilitation following prostate cancer surgery. Just about every man is going to lose his erections right after surgery. There is hope of recovery. Ultimately, what helps that recovery is penile rehabilitation, which is based on the notion that all men will have difficulties with erections after surgery. Men do not get nocturnal or morning erections, nor do they get erections in a sexual situation after surgery. If that’s the case, the penile tissue can atrophy. When penile tissue atrophies, it’s a little different than other muscles that can be built back up.

Hopefully, the surgeon has done nerve-sparing surgery—sparing the two nerves that run bilaterally along the prostate to the penis, the nerves responsible for erections. If the prostate cancer is not close to those nerves, the surgeon can pry away from the prostate. The surgeon must then stretch, clamp, and pull the nerves out of the way. Then they remove the prostate, and the nerves adhere to the prostate bed. Even though the nerves have been saved, those nerves are injured intraoperatively. It’s that injury that causes the erectile dysfunction or the difficulty with erections.

It can take about 18 to 24 months for the nerves to heal. That’s a two-year recovery period. In that time, if men are not getting either nocturnal or morning erections nor erections in a sexual situation, then that penile tissue can atrophy. The idea is to help men get medication-assisted erections consistently in this period where the nerves are healing.

Which medications do they usually use?

Dr. Nelson: The first choice is pills: the PDE5 inhibitors like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). Those work off of the nitric oxide secreted from the nerves, so if the nerves aren’t healthy and aren’t secreting nitric oxide, then the mechanism of action for those pills isn’t there. For many men after surgery—especially right after surgery—those pills aren’t effective.

For most sexual medicine professionals who do this kind of rehab, the next step is to use penile injections to restore erections. The injections are used every time a man wants an erection. The injection is in the shaft of the penis, toward the base. It’s a very thin needle, so it doesn’t really hurt. For example, after the first injection, we’ve asked men how painful it was on a zero to 10 scale, where 10 is pain as bad as you could imagine. Men generally rate the pain between a zero and two on the pain scale. There’s anxiety associated with it, but after you do it a few times, the anxiety tends to dissipate.

The notion of penile rehabilitation then for most men is to use these penile injections about two or three times a week. The idea is that the injection will pull oxygen-rich blood into the penis, give the man an erection, and keep the penile tissue healthy. In terms of rehabilitation, what men do with the erection is up to them. It can be used in sexual situation or not. The idea is just to have an erection to keep the penile tissue healthy.

With injections, the goal is to get an erection two to three times a week through the recovery period, which is up to two years. The hope is this will give men a better chance to recover erections. We don’t know exactly what will happen. But the data suggests that this gives men a better chance of recovering erections on their own without medications.

Then if they don’t recover erections, they have a better chance of responding to pills, like Viagra (sildenafil), Levitra (vardenafil), or Cialis (tadalafil). That’s the rehab program.

Now, you can imagine that it’s hard for men to stay on that type of penile program.

How do you help men adhere to the rehabilitation program?

Dr. Nelson: Compliance is difficult with any type of medication, and now we’re asking men to self-inject their penis two to three times a week. Men say that difficulty with erections is a shameful experience. There is fear of entering into sexual situations with ED, and on top of this, the notion of injections causes fear.

Our intervention explains this process of avoidance, and then uses concepts such as why it’s important to recover erections in terms of his or the couple’s values. Maybe he wants to feel like a man again. Maybe he wants to just feel healthy again or whole. If a man is single and dating, maybe he wants to feel that he can still date. The idea is to start with the values and build from there.

Subscribers can read the entire conversation in their September 2017 issue.

Not a member? Subscribe to learn more about Dr. Nelson’s trial and the type of patients he’s recruiting.


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Are Male Survivorship Treatments Experimental?

 

Dr. Martin Miner is the Co-Director of the Men’s Health Center at The Miriam Hospital in Providence, Rhode Island.

Prostatepedia spoke with him about how his center helps men who have erectile dysfunction after prostate

Miner Head PhotoHow common is ED in the general population? What causes it?

Dr. Miner: Most studies show that ED occurs in 50% or more of men. The public thinks it’s related to aging, but in truth, it’s more prevalent with aging because there are more comorbidities (meaning coexisting medical problems) that occur in men as they age. As men age, they tend to develop high blood pressure, elevated lipids, and type 2 diabetes. Many become obese, and specifically get visceral adiposity, or belly fat. Erectile dysfunction is related to all of these conditions.

Once present, ED is not only related to the issue of vascular filling but also to psychological issues. Men are devastated when their sexual function is impaired. They become anxious and performance-focused. That only makes attaining an erection more difficult.

What kind of an impact can ED have on a man?

Dr. Miner: For most men, ED affects every phase of their lives. We’re pretty simple creatures. From youth, we are used to waking with morning erections, and whether we used them or not, they can be validating, making us feel virile and healthy.

When that no longer happens or when we have difficulty achieving erections, it impairs our self-esteem. We can become depressed and frustrated, which can cause us to seek to blame and distance ourselves from those we love, especially our sexual partners. We no longer initiate lovemaking and are unreceptive to lovemaking because we don’t want to do something at which we consistently fail.

Most cases of ED begin with difficulty keeping erections and then progress to difficulty getting and keeping an erection. It’s a gradual process, almost insidious in nature. You know that your erections are no longer rigid or hard. Your partner is aware of it as well, so you can become ashamed.

Does that shame prevent men from seeking help?

Dr. Miner: At some point, most men will seek treatment. Medications like sildenafil have revolutionized the way we look at sexual functioning. They’ve allowed men who previously might have been quiet and accepted this as a normal part of aging to address an impairment that they no longer feel they need to accept.

They’ll bring it up to their clinician. It may be difficult for them to raise that issue with their clinicians, though, since they might feel embarrassed. Often it’s an end-of-the-visit discussion or what we call a backdoor complaint: “By the way, Doc, do you have any samples of Viagra?”

Studies show that patients appreciate when providers initiate discussions about their sexual functioning. Even if they have no problems, they feel validated because they know they can raise the issue of sexual functioning if necessary.

Women now outnumber men as primary care clinicians. While many women have no difficulties asking men about sexual function, some do. We need to retrain those female providers to help them feel comfortable.

How common is ED after prostate cancer?

Dr. Miner: We know that erections occur normally due to an increase in blood flow, or vasodilation, of the very small blood vessels that fill the penis. It’s also related to neurologic excitation, or release of a gas called nitric oxide, which is why meds like Viagra (sildenafil), Levitra (vardenafil), and Cialis (tadalafil) work; they prevent the breakdown of that gas. A neurologic, vascular, endocrinologic (hormonal) insult, or compromise, can cause ED.

In prostate cancer, there are insults in all three of those spheres, the most significant being the complete loss of erections following surgical treatment, which has an incidence of 98%. It is also associated with complete incontinence.

The nerve bundles around the prostate gland are like tendrils of a spiderweb, and it’s very difficult not to harm those bundles. When those bundles are even exposed to the atmosphere, opened, or touched, they go to sleep. Not even the best surgeons can spare them. After surgery, they have to return to function over time.

The first thing that happens after prostate cancer is men have an overwhelming fear about their incontinence. They wear pads, which can be very humiliating. Their first desire is to get dry and we recognize that. Then we work on a program to reawaken these nerve bundles to the penis while we continue to keep their penile tissue healthy until recovery.

There are some emerging treatments for less aggressive prostate cancer, like proton beam therapy, which may have less of an impact on sexual function. But most, if not all, therapies for prostate cancer have a significant and direct impact on sexual function. Male survivorship treatments, including the return of sexual function, are not covered by insurance because they’re termed experimental.

Subscribe to read the rest of the conversation.

(Subscribers were sent a copy of the issue on September 1!)

 


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Advances in ED Treatments

This month, Prostatepedia is talking about erectile dysfunction after prostate cancer treatment.

Yesterday, we posted an excerpt of an interview with Dr. Mohit Khera that appears in our September issue. But you may also want to watch a presentation he gave in 2015 at Dr. E. David Crawford’s annual Arizona conference for urologists and primary care physicians Perspectives in Urology: Point • Counterpoint. The presentation was geared toward other doctors, but it has a lot of valuable information for patients.

Watch Dr. Khera’s presentation from November, 2015.

If your doctor isn’t already planning to attend this coming November’s Perspectives in Urology: Point • Counterpoint, he or she should!