Conversations With Prostate Cancer Experts

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Dr. Mary-Ellen Taplin On Zytiga, Xtandi + Erleada

Dr. Mary-Ellen Taplin is the Director of Clinical Research at the Lank Center for Genitourinary Oncology at Dana-Farber Institute. Prostatepedia spoke with her about the impact Zytiga (abiraterone), Xtandi (enzalutamide), and Erleada (apalutamide) have had on how we treat prostate cancer patients.

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Why did you become a doctor?

Dr. Mary-Ellen Taplin: I was drawn to medicine because I really like the science behind cell biology and cell growth. I was attracted to oncology because I like being able to think about how to attack unbridled cell growth. Oncology is about understanding mechanisms of response and resistance. My goal is to give patients the highest level of care through application of basic discovery and not just go with the same status quo. For me, it was the intellectual pursuit of cell biology that then connected with oncology and oncology patients.

Have you had any particular patients over the years whose cases have changed either how you see your own role as a doctor or how you practice medicine?

Dr. Taplin: I treat all my patients as if they were family. I try to go to where they are, provide support, and be a healer. I give them the best go at the best quality of life and length of life that they can have.

Can you talk to us a bit about how Zytiga (abiraterone), Xtandi (enzalutamide), and Erleada (apalutamide) have changed the treatment landscape for men with prostate cancer?

Dr. Taplin: First, in castrate-resistant cancer, these agents have provided patients with fairly well-tolerated oral therapies that work well in most people, at least for a significant period of time. It’s never long enough, but for a year or two, they work well.

Prior to these agents, all we had was ketoconazole, which works similarly to Zytiga (abiraterone) but is less targeted and has a lot of side effects. Ketoconazole wasn’t approved specifically for prostate cancer and wasn’t an optimal drug. We also had chemotherapy. Patients’ lifestyles are always more hindered by having to come in for IV chemotherapy every three weeks compared to taking oral medications.

These newer drugs not only provide effective therapy, but also provide therapy that is more conducive to keeping patients in their regular lifestyles.

Secondly, with newer data that has since evolved, these agents have also been found to improve outcomes for patients when used earlier, like in patients with non-metastatic castrate-resistant prostate cancer, in the case of Erleada (apalutamide), and for hormone-sensitive metastatic disease, in the case of Zytiga (abiraterone).

So, firstly: men with castrate resistant metastatic prostate cancer have more tolerable options, an improved life expectancy, reduced cancer related symptoms on many levels, reduced intensive pain, reduced need for narcotics, and reduced need for early chemotherapy. All things that go along with improving people’s quality of life while treating them.

And then secondly, moving these agents up earlier in disease progression has provided benefits to earlier stage patients. There are a lot of ongoing investigations looking at using these drugs earlier in conjunction with radiation and even prostatectomy. The field is not done with trying to optimize the timing and improving outcomes for patients with these particular clinical tools.

Which combinations are being explored, and which might be the most promising in the long run?

Dr. Taplin: To date, there are no combinations that have been proven effective in any sequential therapy in castrate-resistant prostate cancer (CRPC), but combinations are important and should be evaluated. There is strong biologic rationale to combine Xtandi (enzalutamide) with a CPY-17 inhibitor (abiraterone), Xtandi (enzalutamide) and a PD-1 inhibitor, or Xtandi (enzalutamide) or Erleada (apalutamide) with a PI3 kinase pathway inhibitor.

These are important combinations to explore. But in prostate cancer, at least in the 28 years that I’ve been practicing, despite many trials, not one combination regimen has been approved in CRPC. It’s tough to build a combination therapy in prostate cancer for unclear reasons. That doesn’t mean we shouldn’t explore them, but it means it’s unclear how effective combination therapy will be, at least in the short term.

There is a Phase III Alliance trial looking at Xtandi (enzalutamide) and Zytiga (abiraterone) together in patients with castrate-resistant prostate cancer. Dr. Mike Morris is the Principal Investigator. The biologic rationale is strong to explore more intense androgen receptor pathway inhibition with the combination of a second-generation AR antagonist with a ligand antagonist like Zytiga (abiraterone).

The preclinical rationale is promising, but to date, combination therapy in prostate cancer has been an unfulfilled dream.

What are the side effects like for each of these agents?

Dr. Taplin: There are differences, but they all cause some degree of fatigue, muscle wasting, and hypertension. With Zytiga (abiraterone) we have to watch for low potassium and elevated liver enzymes. We don’t see those things with Xtandi (enzalutamide) or Erleada (apalutamide). In a subset of patients, there is some cognitive clouding, some reduced concentration even to the point of confusion with Xtandi (enzalutamide), though rarely with Zytiga (abiraterone). Erleada (apalutamide) can rarely cause hypothyroidism, which is specific to that drug, so it needs to be monitored.

In general, patients need to have laboratory and blood pressure monitoring on a regular basis, every 2-8 weeks depending on the patient and the individual risks.

At present most patients are castrate resistant when they start on these drugs, so they’ve already had years of adjusting to medical castration. These patients have usually adjusted to the typical side effects that you see with medical castration when you start them on Lupron (leuprolide) or similar LHRH agonists/antagonists and have been more or less familiar with side effects such as hot flashes and weight gain for years.

A lot of patients talk about the high price of these medications. Do you have any thoughts about that?

Dr. Taplin: It’s a big problem. The copays are anywhere from $0 to $4,000 if you have coverage. Then there are the people who don’t have any coverage. This is the nature of Big Pharma in the United States and because the United States bears the burden of research and development of these products for the rest of the world. They’re expensive, and as a society, we have not prioritized dealing with the costs. Sometimes what we would consider even a small copay for a particular patient is too much for them. They’re faced with paying their phone bill or getting their medication.

It’s been well documented that, especially in the elderly, these expensive medications lead to people not taking their medication correctly, trying to stretch them out, skipping days or reducing doses, or not taking them all together. It’s a little different for cancer medication than, say, for blood pressure medicine. Cancer patients are more motivated to take the medication, but probably, they do not often take it correctly to try to make it last longer.

Family members sometimes share the burden. The patient can’t afford the drug, so family members try to patch together the funding. It can be a family problem as well as an individual problem.

I don’t know what the answer is, but it’s definitely true that, as we develop more oral therapies in prostate cancer, patients could be on very expensive sequential oral therapies for many years. For instance, a patient may go from bicalutamide to Zytiga (abiraterone) to Xtandi (enzalutamide) to Lynparza (olaparib). Three out of those four are expensive oral therapies. You’re not just talking about big copays for a year—because Zytiga is only going to work for a year—but sequential copays. These patients are probably going to be on these oral drugs for many years.

Does that ever factor into your choice of which agents to use in which patient?

Dr. Taplin: If we had more choice, it would. Most insurance companies require, at least in castrate-resistant prostate cancer, that you use Zytiga (abiraterone) first because, though still expensive, it is less expensive than enzalutamide. You don’t have a choice as a physician because the insurance companies decide what will be covered. Zytiga (abiraterone) is less expensive than Xtandi (enzalutamide) by almost 50 percent. I’ve stopped doing appeals to insurance companies for these drugs because insurance denials are rarely over turned.

Do you have any thoughts for men who’ve been prescribed any of these agents?

Dr. Taplin: Get guidance from the physician who is prescribing them so that you understand the common potential side effects. Take them as prescribed. If there is toxicity, discuss with your doctors the potential for a dose reduction. Even though there’s the FDA-recommended dose, often these medicines work well at lower doses. You might have less toxicity or feel better, say, on 750 mg instead of 1,000 mg of Zytiga (abiraterone) or 120 mg instead of 160 mg of Xtandi (enzalutamide). Don’t do that on your own, but it’s something that could be discussed with your doctor.

Another important message to get out to patients on these medications is the importance of keeping strong and of regular exercise. Find exercise and activities that you like. Get a trainer. Join a YMCA. Do the LIVESTRONG program. Commit to some sort of strengthening activity to keep your muscles. That will reduce side effects over time and be helpful. Of course, diet is important. A good heart-healthy diet is a good prostate cancer patient diet as well. Exercise and diet are often neglected by patients and physicians but are really important tools for patients on second generation hormone inhibiting drugs.

Diet and exercise can put patients in a better place so that they don’t have a fall or other toxicity problems. If you get a prescription for Xtandi (enzalutamide), you should also get a prescription to go to the gym four times a week. You need more than just a walk to the mailbox and back or to go grocery shopping. You don’t have to be an Olympic athlete, but doing some type of strength training will help build muscle, or at least reduce the reduction in muscle tone that a lot of these men suffer from.

Join is to read the rest of our October conversations about Zytiga (abiraterone), Xtandi (enzalutamide) and Erleada (apalutamide).

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October Prostatepedia: Zytiga (abiraterone), Xtandi (enzalutamide) and Erleada (apalutamide)

Chances are you’ve heard of the prostate cancer drugs Zytiga (abiraterone), Xtandi (enzalutamide) and Erleada (apalutamide) even if you haven’t been prescribed any of the three agents yourself.

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They are among a collection of new drugs introduced in the past 5-10 years that have totally transformed how we treat prostate cancer. Others you may also recognize include Xofigo (radium-223) and Provenge (sipuleucl-T.)

One way of treating prostate cancer is of course to block androgens, which are male hormones. (Prostate cancer feeds on these male sex hormones.) This usually works for a while, but eventually some prostate cancers continue to grow even in very low androgen levels.

We now understand that these particular tumors have become so sensitive to androgens that they only need a very little bit to grow. Androgen levels are therefore higher in a prostate cancer tumor than in a normal prostate.

Newer drugs like Xtandi (enzalutamide) and Erleada (apalutamide) work by blocking these androgens from binding to the androgen receptor more effectively than earlier drugs. Zytiga (abiraterone) works by reducing androgen levels much more effectively than earlier drugs. Originally approved for men with metastases whose prostate cancers are resistant to hormonal therapy only after chemotherapy stopped working, researchers have been diligently exploring whether or not these agents are useful in other settings—i.e. before chemotherapy or in men without metastases.


Those explorations have panned out: men with metastatic prostate cancer resistant to hormonal therapy are now prescribed Zytiga (abiraterone) and Xtandi (enzalutamide) as an initial treatment. And men with prostate cancer resistant to hormonal therapy but without metastases are prescribed Erleada (apalutamide). All drugs extend life and extend the amount of time before the cancer appears to be growing on imaging studies.

What isn’t so clear are the implications of the early use of these agents— both in terms of side effects and financial burden on patient, nor why some men appear to become resistant to the drugs after a period of time.

Read the conversations this month carefully and then forward to your doctor. Even if your particular situation doesn’t warrant their use today, educating yourself about them will serve you well: if your doctor ever does suggest you use one of these agents, the two of you can have an informed in-depth discussion about whether they’re right for you.

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Zytiga, Xtandi + Erleada

In October, Prostatepedia takes an in-depth look at a relatively new set of prostate cancer drugs—Zytiga (abiraterone), Xtandi (enzalutamide) and Erleada (apalutamide).

Dr. Snuffy Myers frames this month’s conversations for us.


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The development and FDA approval of the new anti-androgens, Zytiga (abiraterone), Xtandi (enzalutamide) and Erleada (apalutamide), represent a major advance in prostate cancer treatment. This issue provides you with experts’ current views on the use of these agents.

For hormone resistant metastatic prostate cancer, their use is now well established. They can provide an alternative to Taxotere (docetaxel) chemotherapy in patients who have failed initial hormonal therapy. While most patients will eventually experience cancer progression on these agents and need chemotherapy, the delay in initiating chemotherapy prolongs the period they have with better quality of life.

Recent trials have extended the use of these drugs to patients with nonmetastatic hormone resistant disease. These studies have shown that early use of these drugs results in a rather dramatic delay in the appearance of metastatic disease. As a result, early use of these agents is becoming widespread.

However, Dr. Mario Eisenberger does an excellent job of discussing unresolved issues with the early use of these drugs. I agree with him that we need to be concerned about long-term side effects of these drugs as many men are likely to be on them for more than five years. For example, Zytiga (abiraterone) results in a rapid drop in both testosterone and estradiol. As estradiol plays a major role in bone health, it is possible that long-term use of Zytiga (abiraterone) might increase the risk of fractures.

The current trend in clinical trial design is to test drugs in all patients who clinically fit the protocol. Thus, all men with hormone resistant metastatic disease would be tested with Zytiga (abiraterone) or Xtandi (enzalutamide). Dr. Eleni Efstathiou correctly points out that a portion of these patients’ cancers may already have molecular changes that make them likely to respond poorly to these drugs. She is investigating whether testing for these molecular changes will allow clinicians to select patients likely to have a significant and durable response to treatment. This approach makes sense.

As a practical matter, these new drugs are important enough that you, as a patient, want to make sure that the doctor managing your prostate cancer is knowledgeable and experienced in the use of these drugs.

Join us to read this month’s conversations about Zytiga (abiraterone), Xtandi (enzalutamide), and Erleada (apalutamide).

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Erectile Dysfunction After Radiation

Dr. Irving Kaplan is a radiation oncologist at Beth Israel Deaconess Medical Center and an Assistant Professor at Harvard Medical School.

Prostatepedia spoke with him about erectile dysfunction after stereotactic body radiotherapy (SBRT).

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Why did you become a doctor?

Dr. Irving Kaplan: I started out as a basic researcher. But when I was in medical school, I realized I’d much rather deal with people than petri dishes. I decided to do clinical medicine.

Have you had any particular patients who’ve changed how you see your own role as a doctor?

Dr. Kaplan: Every patient brings something different. In your training as a radiation oncologist, you see patients all throughout the course of treatment, sometimes even in a palliative setting. You learn a lot from patients.

How common is erectile dysfunction (ED) after SBRT?

Dr. Kaplan: Evaluating erectile function after radiation has always been a difficult issue. We have to rely on patient questionnaires. If we relied on what the doctors recorded in their notes, it wouldn’t be valid because doctors overestimate how good their patients’ erections are posttreatment. We have to rely on patient-reported outcomes. And that’s very complex.

There are many factors that determine if a person will develop ED after treatment. Radiation doesn’t cut the nerves, but it does age them. If there’s a natural decline in a man’s function over time, radiation pushes them down along that curve by four to five years.

A young patient, meaning under 65 or so, who has good erections before treatment, has a 75 to 80 percent chance of having no change in his erections for two or three years. Further down the line, he can start to have problems, but it’s really no worse than with any other form of radiation. There are no direct comparative studies, though, in which half the patients got one form of radiation and the other half got another.

We do have models that people have created, though, in which you plug in a patient’s age, current function, whether or not he has diabetes, his body mass index, etc.—all things that impact erections —to predict his chances of having ED after external beam or brachytherapy.

Patients receiving radiosurgery are not statistically better or worse than those getting other forms of treatment.

What kinds of ED treatments are effective after SBRT?

Dr. Kaplan: There is a big difference in ED treatment after surgery versus ED treatment after radiation. After radiation, we use medicines called PDE5 inhibitors—Viagra (sildenafil), Cialis (tadalafil), and Levitra (vardenafil). If taken appropriately, these tend to work 80 to 85% of the time. We use these medicines in patients who have good erections and then start to develop some mild ED.

If someone already needs Viagra (sildenafil) or other medications before radiation, they often need a bump up in their dose after radiation but are also more likely to have longer-term issues.

In addition to medications, there are injections, vacuum devices, and penile prostheses.

Is there anything a man can do before SBRT to reduce his risk of ED after treatment?

Dr. Kaplan: I don’t think that has really been tried very much. With regular radiation, they did try using low-dose Cialis (tadalafil) during treatment. That study really didn’t show much of a benefit. The idea was that if you keep the blood flowing the way it normally should during radiation, that blood flow should be better after radiation.

It was a good idea, but it didn’t pan out.

Again, I’m not differentiating between radiosurgery and regular external beam or brachytherapy.

What advice would you give to patients about to undergo treatment?

Dr. Kaplan: Before I see a patient, I get a baseline in terms of their bowel, bladder, and sexual functioning through some standard questionnaires. This helps guide the discussion. Especially in younger patients who do have pretty good function, sexual function is always part of the discussion.

Again, there is no standard patient. Some patients can have very good erections, but they have decreased volume of ejaculate after radiation. You get that with surgery as well. For some men, that is a big deal.

We discuss all aspects of sexual functioning, not just erections.

A lot of men are nervous about taking drugs like Viagra (sildenafil) because they see the advertisements. One side effect listed in commercials on American TV is the possibility of prolonged erections of more than four hours. One patient who was in advertising thought that was a great advertising ploy.

Too many men, I think, who really want to have good erections are turned off by the medications but there usually aren’t any contraindications. They’re very widely prescribed. Patients should not be so scared about taking them. I have a lot of patients who complain bitterly. I give them a prescription, but the next time I see them, they haven’t filled the prescription because they’re scared, or their wife tells them not to do it.

There can be a lot of reluctance, but in my clinical practice, they are extremely well tolerated and can work.

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Can You Self-Manage Your Symptoms?

Dr. Sarah Hawley is keenly interested in decision-making among cancer patients and physician-patient communication. She recently completed a study that looked at using automated voice-response technology to help veterans self-manage erectile dysfunction, urinary incontinence, bowel incontinence, and general loss of vitality after prostate cancer treatment.

Prostatepedia spoke with her about her study and its implications for men with prostate cancer.

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How did you come to focus on decision-making in cancer patients? Why patient-physician education?

Dr. Sarah Hawley: I have had a long-standing interest in cancer outcomes and delivery, growing out of my doctorate program. My postdoctorate program was in the area of cancer care delivery and quality and studying access. As part of that, I became interested in how decisions that patients make, both on their own and in collaboration with their providers, influence the care they get. I noticed that even in similar health systems there were groups of patients who got different types of care. Some people get too much care; some people are not getting enough care.

I became really interested in the role that the decision-making process plays in that. Could that be a potential mechanism for improving access and outcomes for patients? Part of that is the patient-physician communication process and the patient-physician-caregiver communication process. Many patients have loved ones who join them in making these very difficult and challenging decisions.

How did you come to be working with patients from the Veterans Administration?

Dr. Hawley: I’ve been on the faculty of the University of Michigan and an investigator in the Ann Arbor Veterans Administration (VA) center for clinical management research since 2004. When I came to this position, it was a joint position. I had not worked with veterans before. I had not worked in the VA system before, but I was really excited about the chance to study communication and decision making in the Veteran population.

As part of my career over the last 10 or so years, I’ve been able to do similar projects, both within and outside of the VA, and I have looked at veterans and non-veterans. It’s been very rewarding to be able to do that in both settings.

How common is prostate cancer among veterans?

Dr. Hawley: Obviously, the veteran health system is predominantly male. Although that has been slightly changing, especially in more recent years, it still predominantly services male patients. Prostate cancer is the most common cancer in veterans. Lung cancer remains the most commonly diagnosed cancer outside the VA.

Approximately 12,000 veterans are diagnosed with prostate cancer every year. Most of those men have early-stage prostate cancer, partly because of the use of PSA screening to identify potential prostate cancer as opposed to identifying later-stage cancer, which has metastasized. This means that the patient has to make a treatment decision about how to manage his cancer: surgery, radiation therapy, or, increasingly, active surveillance, which is an active management strategy without any medical intervention. That is a complicated and difficult decision and one that veterans face daily.

Talk to us about the study you did on self-managing symptoms after prostate cancer treatment.

Dr. Hawley: To do this study, we took a jump from the decision-making side of things to the survivorship side of things. A patient who has received a cancer diagnosis—of any cancer— makes a treatment decision early on: surgery or radiation. As I mentioned, in prostate cancer there is now the option of active surveillance. Early-stage prostate cancer is very survivable. Most of the patients live and thrive into survivorship.

However, many of them have received surgery or radiation. Both of those treatments have side effects, which are very present in the first few months following treatment. A lot of these side effects remain issues for men for months, and even years, following their diagnosis. Patients then transition from that initial treatment phase into survivorship. But there’s no clear time point when that happens. They are released back into their regular follow-up care and do quite well except for these symptoms.

Programs do not really exist, either within or outside of the VA, to help men who are dealing with these long-term symptoms.

The symptoms can include urinary and sexual symptoms. They can have problems with incontinence and pain with urination. Men can have impotence. There are also some bowel problems that men experience and general health or vitality issues.

Those are the grouping of symptoms that we were interested in trying to help improve in this long-term survivorship population. Again, this is a group that hasn’t really been the target of many interventions. All of these symptoms, to some extent, can be self-managed. There is a trajectory of less serious to more serious symptoms.

One of the things that we try to do is help the patient understand when the symptom is so serious it may need a consultation with a specialist.

How was your study structured? How many patients did you have?

Dr. Hawley: We developed an intervention, which was based on some prior work that our team had done, using automated voice-response technology: you get a phone call and can interact with the phone system, not a person on the other end. We used that approach to measure symptoms using an established measure of prostate cancer symptoms. The EPIC, or the expanded prostate cancer index, is an established measure that assesses urinary, sexual, bowel, and general health.

We programmed that into an automated system and allowed men to interact with it. After that interaction, they could choose through the automated system one of the symptoms that they felt they wanted help with. We then mailed them a tailored newsletter with information about the symptom they had chosen to focus on and what they could do at home. We also included information about when it’s more important to seek specialist care.

We also had a component of the newsletter that focused on coping. Some patients deal with these symptoms for a long time. Whether we can actually improve the symptom or not, we felt it was important to offer coping strategies based on cognitive behavioral therapy.

The intervention consisted of four automated phone call assessments followed by a newsletter over a four-month period.

What did the control group get?

Dr. Hawley: They got one newsletter, which focused on general symptom self-management. Symptoms can be self-managed. Be aware of that. These are things that you can do at home. You can talk to your physician if things get worse. The newsletter wasn’t tailored to a symptom of their choice. It didn’t include the coping strategies based on behavioral therapy approaches.

What did you find?

Dr. Hawley: The overall study was a randomized control trial. We enrolled men from four VAs and randomized them online to one of those two groups. At five months, we evaluated their symptoms using the EPIC, their confidence and their ability to manage symptoms, and then some secondary outcomes related to how they viewed cancer and their outlook. What we found in the overall comparison between intervention and control arm was a slight signal in some of the intervention measures of being better than in the control measures but nothing was statistically significant.

When we did a more detailed analysis we saw a positive effect in the intervention arm in each area that men chose to focus on. That was really exciting to see.

It suggests that this intervention can be useful in helping men improve their symptoms over time. We also found that the patients themselves thought the intervention was extremely positive. We had extremely good participation and experience rates, even in the intervention arm, which did require a fair bit of work with four phone calls over four months. We had really positive reports among the participants at the end of the intervention; they found it useful and helpful.

We even found positive reports in the control arm as well. We think some of this is probably a reflection of the fact that there just is not a lot available for this population. To be offered help, and to identify that there’s a problem and that the VA is interested in trying to help support prostate cancer survivors was genuinely appreciated by all participants, even if they only received the nontailored newsletter.

What are the implications of this study?

Dr. Hawley: An intervention like this shows promise for helping improve symptoms over time if tailored to an area of focus that the patient desires to focus on. We would like to look at this in a bigger sample and match interventions, control and a choice of symptom, which we weren’t able to do in this study.

Interventions like this are very well received in prostate cancer survivors in the VA. Enrollment rates were good. Persistence with the intervention was good. Fidelity to the intervention was good. There’s a need for some kind of program for prostate cancer survivors to help them get through these debilitating symptoms.

There’s always further work to be done. We would love to continue to refine the intervention and then perhaps roll it out to some type of dissemination or implementation study to see if we could continue to see an improvement for these patients.

What do you think are the obstacles to implementing something like this across the entire Veterans Administration?

Dr. Hawley: The obstacles are the same for any system the size of the VA. It’s more of a technology system challenge, I think, which is always there for any health system. I think if it were solved, veterans would use it.

Do you have any final thoughts for patients about self-managing symptoms?

Dr. Hawley: Management of symptoms is possible. Self-management is one way to manage symptoms, and for some better than others. I encourage patients to keep having conversations with their providers if they’re not satisfied with the management that they experience.

Finally, I’d like to acknowledge the critical input of Dr. Ted Skolarus, Section Chief of Urology at the Ann Arbor VA. I would also like to acknowledge the study team in Ann Arbor, as well as the 4 study sites—the VA Ann Arbor Healthcare System, the St. Louis VA Medical Center John Cochran Division, the Louis Stokes VA Medical Center, and the VA Pittsburgh Healthcare System University Drive Division.

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A Spouse Offers Advice: Build a Strong Foundation

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.

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How did your husband find out that he had prostate cancer?

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.

What was your reaction to the diagnosis?

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.

Did he have trouble with ED before prostate cancer?

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.

What kinds of prostate cancer treatment did he end up getting?

R.: He had a robot-assisted, nerve-sparing radical prostatectomy in April 2016.

Did you explore the idea of radiation or did you know right away that he wanted surgery?

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.

What kinds of conversations did you have about potential side effects after surgery? Did your doctor talk to you both about ED?

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.

Did they talk to you at all about things that he could do before the surgery? I know that some recommend a low dose of Viagra (sildenafil).

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.

Did you have a plan for rehabilitation after surgery?

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.

What kinds of problems did J. have after surgery?

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.

That must have been frightening.

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.

Was he in pain?

R.: No. Just the bleeding.

Did he use any ED treatments after that?

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.

Was it effective?

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.

What were your feelings while all this is going on?

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.

You maintained intimacy and contact until sexual activity was possible again?

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.

That’s actually kind of wonderful.

R.: It was. I mean, I wouldn’t recommend it, but it definitely moved us into a whole different space.

You were comfortable talking to each other about potential problems with erectile dysfunction but what about discussing the issues with other people?

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.

Was this email or phone support?

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.

I’ve heard a lot about these bigger support groups, but it must have been good to have that one-on-one connection.

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.

Many patients and their spouses get a lot out of hearing other’s stories. It makes you feel a little bit less alone.

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.

That must’ve made it even worse: being worried and scared about something while this other person is reacting as if your fears are trivial.

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.

Do you have any advice for men and their spouses?

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.

You mentioned wanting to start a women’s group.

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.

I think you’d be great at it, though. You’re so open and honest and calm.

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.

It’s an integral part of a marriage. If that disappears, then what happens to the marriage?

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.

That’s a discrete, logical way to approach it.

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.

Would you suggest to men and their spouses that they see an ED specialist before they even have surgery as a way of preparing themselves?

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.

The more you know going into it, the better you’re equipped to deal with whatever happens after?

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.

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Brian M Talks About Dealing With ED

Brian M was diagnosed with prostate cancer in 2011.

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

How did you find out that you had prostate cancer?

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

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

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

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

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

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

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

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

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

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

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

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

He didn’t rush you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Brian M: Yes, it does.

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

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

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

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

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

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

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

Doctor’s orders.

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

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

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

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

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

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

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

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

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

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

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

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

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

Does she read them?

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

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

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

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

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