Ask Amy … to Get a Woman’s Point of View

Sometimes even men can benefit from a female point of view on what appear, at first sight, to be exclusively male health issues.

ask-amy-sm.jpgAmy is the wife of a long-time prostate cancer patient who has agreed to offer her experience in whatever way she may be able to help. In particular, we believe she will be able to give suggestions and guidance to the wives, partners, mother, sisters, daughters, nieces, and female friends of prostate cancer patients as those patients go through the difficult processes of diagnosis and treatment for a disease that is emotionally unsettling for most men.

Please understand that Amy is not a physician. She is “just” a well educated laywoman with very personal experience of prostate cancer and its problems. She cannot provide you with medical advice. You should always talk to your doctor about your clinical condition and how it should be managed.

You may post your question for Amy using the comments / reply box below. Questions and answers are retained on this page for approximately 60-90 days from the time they are originally posted.

33 Responses

  1. Amy:

    I am a 62-year-old man recently diagnosed with T3b, high-risk prostate cancer with Gleason scores of 9 and 7 who just started external beam radiation targeted to the prostate and the general pelvic region (in case it has escaped the prostate capsule). I am also on bicalutamide with hormone injections to start next week. I am in great care here in London, Ontario at the London Regional Cancer Clinic and know that the treatment is aimed at cure and not management.

    My question is more for my wife and I and our intimate life together. My wife is 8 years younger than me, also robust, and we have enjoyed a fabulous physical and emotional intimacy throughout our 10-year relationship (7 years married). What successful strategies are you aware of to help us bridge the 3 years of impotence that we are expecting? I know this is a very delicate subject and we are not adverse to oral pleasure and know about toys. What can I look forward to in terms of my wife’s needs, and best ways to solve them?

    Amy responded as follows:

    Dear Ric:

    What your wife needs from you more than anything else is probably to know that you love her and that you will always talk to her about what you are feeling and what she is feeling. Then you can make good decisions together about what you both want to do about any specific issue. However, you and she need to discuss what she needs, together. You don’t need my help to do this!

    In my relatively limited and personal experience, most of the problems related to physical and emotional intimacy associated with prostate cancer (and many other sexually related medical conditions) are the consequence of (a) a failure to communicate and (b) the fact that so many men define their relationships with their partners in terms of their supposed sexual prowess (as opposed to their frequently limited ability to understand that intimacy is first emotional and only secondarily physical).

    So my advice is simple. Talk to each other. Think of this period as starting dating all over again. Go dancing. Take her out for romantic dinners. Make her feel loved. The physical bit will take care of itself if you are both delighting in each other’s company. Every day is a new opportunity to surprise her with something … however small.

    Amy

  2. I feel confused. I am dating a prostate survivor whose divorce is pending. His wife didn’t want physical relations and asked for a divorce. My confusion arises because he seems to enjoy me, communicates daily. Yet when we’re together he never initiates touching.

    We have been going out several months with just a chaste kiss and hug. Us this a common situation for a man who is a prostate cancer survivor? What should my role be? He a prince of a guy. But I need to feel desired. What to do?

    Amy responded as follows:

    Dear Julie:

    So there is dating and friendship and a fond relationship and then there is love, passion, desire, and …

    There is a series of very fundamental questions that — sooner or later — you and your survivor need to face up to, which include “Can he?” “Does he want to, but is nervous about his performance?” and “So, are we going to?” In a “normal” relationship, these questions never have to be put into words. However, …

    Some prostate cancer survivors are unable to get an erection at all. Some of those who can’t get an erection at all have found ways to deal with that (e.g., through the use of penile implants or other methods). Some can get an erection but it is not exactly what they used to be able to manage (and they can be very depressed about that). Some can get a decent erection if they use drugs like Viagra or Cialis. And some prostate cancer survivors are completely functional.

    I know that in most cases it is customary for the man to do the desiring and the woman to be the desiree (so to speak), but I came to the conclusion some time ago that in the situation you describe … if nothing is happening after everyone has reached the point in which one might reasonably expect something to be happening … there is a responsibility that falls to the woman to find a way to reach her hand across the table at dinner and say, “So I think maybe there’s something we really need to talk about now that we’ve been out on date 32.” And then one does need to talk about it.

    The resulting outcome depends on all sorts of factors, but the defining criteria for moving beyond where you are is that everyone is going to need to put their cards on the table (again, so to speak). Until you understand the limits of the possible, and he understands whether you can deal with the limits of the possible, your relationship may be stuck exactly where it is, because he probably doesn’t know how to take the next step.

    Does that help?

    Amy

  3. Hi Amy.

    I am currently seeing a man who is going to have his prostate removed. The relationship is still new (less than 6 months) and he has been very shy and refuses to talk about the situation at all. I want to know how I should deal with this and what might change in the relationship after the surgery.

    *****

    Amy responded as follows:

    Dear Robin:

    I’m going to be straightforward, so please excuse some of the language below, but it’s important!

    While, as the saying goes, “Men … You can’t live with’em and you can’t live without’em,” you are facing a situation in which the apparent inability of the man in question to deal with reality brings this into close focus!

    I am quite sure that the man in question is having a real problem knowing how to talk about all this to you or to anyone else. This is (regrettably) normal. Why? Because the potential side effects of having surgery for prostate cancer are emotionally devastating for most men, who tend to measure their “maleness” in terms of their perception of their sexual prowess (regardless of how accurate or inaccurate that perception may be).

    On the other hand, if he wants to build a long-term relationship with you, he’d better find a way to come out of his shell and talk about it. If he can’t, then it seems to me that the whole relationship is probably doomed because it is a signal that the relationship is built on sand (or something else that won’t last forever). It is extraordinarily hard to build any good long-term relationship on a foundation that lacks honesty of communication.

    You have presumably tried being gentle and kind and using the “I just want to know how I am going to be able to help” approach. So a lot depends on the details of the nature of the current level of the relationship (i.e., what, exactly does “I am currently seeing a man” imply?).

    If “I am currently seeing a man” implies regular horizontal and mutual entertainment, then it seems to me that the next time this starts you need to take advantage of the situation after you are both in bed and he is well “primed” and say (with a big smile), “Stop. I wanna ask you something? Are you sure we’re still gonna be able to do this 6 months after your surgery? …”

    I mean, he simply can’t promise you that. It’s just not a promisable eventuality. He may want to be sure but he can’t be — and neither can his surgeon. So then you have the opportunity to pull the rug out from under him fears by saying (if it is true), “… because I can think of all sorts of other ways that we will still be able to have fun if you can’t!”

    The pair of you are at a key moment in the evolution of your relationship. If this is something you can laugh about together and agree that there are ways to get beyond it, that will be great. If he just won’t talk about it at all, under any circumstances, I think you need to think hard about how much further you want to take all this.

    If the relationship hasn’t reached the level implied above, then you have an even bigger challenge because you are basically faced by someone who won’t talk to you about one of the most important things that is ever going to happen to him. And you don’t have the same level of leverage to address the situation. What does that imply about all the other things he may never feel able to talk to you about?

  4. Amy:

    My question: Why am I so angry at my husband for having prostate cancer and not being able to be intimate with me?

    He was diagnosed 7 years ago, at a time when our marriage was very fragile. He had just confessed to me he was having an affair with a younger woman. I reacted as any healthcare worker would and insisted he get tested for STD. Within 15 days, we were in a whirlwind of his diagnosis and surgery and treatment. His cancer was advanced and out of the capsule. We have never had sex since. We have tried many times to be intimate, but anger creeps in. I can’t help but feel like my husband is gone. I know the man is here, but my prince is gone. I loved him so much and all of this was a terrible shock. I miss our intimacy. I just can’t get over all of it.

    I have been to counseling … and it works for a while and then I begin to mourn the loss of our life as it was. He has on a rare occasion wanted to “please me” as he says, but it turns out a disaster. I always think of how “she took the last of my man.” He has changed in so many ways. He is very clingy to me, never wanting me away from him overnight. He is afraid that I am going to cheat on him. I have never and would never inflict that pain on anyone, as I know how it is. Will I ever be able to accept our intimacy as it has to be now or should we just hang it up and get over it. I am just turning 59 and I feel like the last 7 years has aged me immensely.

    Amy responded as follows:

    Dear Nita:

    Clearly the entire experience has been very distressing for you — and probably for him to. It is hardly surprising. The underpinnings of your relationship were severely damaged not just once but twice — within weeks. He has become scared and “clingly”. Why, because he loves you but he feels he has lost the ability to “be a man” in your eyes. You still feel both betrayed and (physically) rejected … to the point at which you can’t even accept his attempts to be intimate. And you (apparently) can’t completely forgive him for the original stupidity … which he must have been feeling bad about if he confessed it and you hadn’t seen that coming.

    I am not a professional counselor, and I really don’t know what to tell you about how you can deal with such circumstances. What is clear to me, however, is that nothing good will happen unless and until you can both put the past 7 years behind you. He has to learn to let you have a life of your own. You need to stop thinking about what you have lost and start accepting and thinking about what you really want (which is certainly not just sex). You seem to need new goals to strive for together and individually, because it sounds as though you are both just “going through the motions” of being a couple without actually acting as one.

    There is a way to deal with the sex problem, and that is for him to go and get a pemile implant — if you can afford this. Many men who have done this feel as though it has “re-masculinized” them. However, this procedure isn’t cheap.

    So to deal with your actual question, I really don’t know why you are so angry with him. I can think of a thousand possible reasons — and many of them are really good ones! But the problem that needs to be addressed is what you both need to be able to do — together and separately — to make that anger go away. It’s gonna take two!

  5. Hi Amy,

    My boyfriend had a spinal cord injury years ago. He cannot have an erection and a few months ago he said that he was thinking about having an implant done. I told him that please do not do this on my account, that I love him the way he is and that we get very intimate, and I’m happy the way things are between us. He feels that he’s not equally sharing with me. That couldn’t be farther from the truth. To add to this he found out that he has prostate cancer. He is undergoing radiation treatment for a total of 9 weeks.

    He doesn’t want us to see each other until after the treatments. For one thing he says he can’t feel he can keep his hands off me. Well, I feel the same. But I understand his concerns. He just started after the completion of 2 weeks into radiation therapy to feel the side effects of fatigue, frequent urination. He’s a trouper. I feel helpless during this time. Is there anything I can do besides offer him encouragement and let him know that I am just a phone call away? I really love him, he’s a great man. Any suggestions?

    Thanks

    Moonstruck

    *****

    Amy replied as follows:

    Dear Moonstruck:

    So if I was in your position I would be sending him silly gifts and postcards a couple of times a week. (I’ll let you get creative about thinking what sort of silly gifts and postcards!) Just because he’s being a dumb, isolationist male doesn’t mean that you can’t be the one who optimizes the creative interconnections! And why does he have to “keep his hands off you” during his treatment anyway?

    :O)

    Amy

  6. My lover and I met again after 50 years and we are very much in love. It has been so cruel to learn that he has prostate cancer, and is having hormone treatment and then radiotherapy. I love him so much and want a life with him, but he seems to be so quiet with me since the diagnosis and never talks of love now, although he says he still loves me very much. How can I help him.

    Pat

    *****

    Amy relied:

    Dear Pat:

    Your friend is struggling with the implications of his mortality … as well as with the practical necessities of treatment for his prostate cancer. You can best help him by giving him distractions that take his mind off the cancer and are just “old-fashioned fun.” Forget the “love” thing for a while. That is going to remind him that standard sex is going to be a problem. What you can do is make sure you go do “ordinary” things together regularly. Go to the movies; go dancing; go for walks in the evening; ask him to do simple things for you like digging over the flowerbed so that you can plant things. What your friend needs more than anything at the moment is a sense of normalcy so that he can realize how to — and have the time to — adapt to the change in his situation. Help him to achieve that sense of normalcy.

    Amy

  7. Dear Amy

    Thank you for the above answer. My wife walked out when my prostate cancer was diagnosed just under 2 years ago. I’m now 54. I previously had a healthy, active, regular love life

    Now, after a CyberKnife process 19 months ago followed by and an intense course of radiotherapy (14 doses), ED is total for me. Is it likely that this will recover in any degree?

    This is playing hugely on my mind, and not helped by other pressures — divorce, resolving the access and contact arrangements for our children and step-children, plus money and work and the horrible reduction in my general strength and ability to lift, carry etc.

    I am suffering from depression as well, due to circumstances, and having no-one to support me has made that so much harder to cope with.

    Recently I have (very unexpectedly) fallen for someone — but — I am at the beginning of our relationship; nothing has yet “happened,” beyond holding hands and kissing and cuddling. She senses “something” is not right and is being very loving and supportive — amazingly so for someone who I’ve just got to know. … I am struggling to get into my head the best way of explaining the effects of prostate cancer and ED.

    Can you offer any guidance please?

    *****

    Amy replied as follows:

    Dear Graham:

    First, let’s talk about the ED. I think we may need to accept that recovery of good, “normal” erectile and sexual function is highly unlikely if there have been few “signs of life” after 19 months. … And I am assuming you have tried using drugs like Viagra to see if they would be of any help. Yes? So this leads to the question of whether you have consulted a specialist in erectile dysfunction to have a serious conversation about what could be done to help with this … up to and including the possibility of things like a penile implant.

    Second, there’s the issue of the depression associated with all the other stuff. It sounds to me as though you are ready to “let go” of a lot of that. This will be helped if you can persuade yourself to give more attention to your general health and fitness. You aren’t going to be able to turn yourself back into an 18-year-old, but making really sure that you are eating well and exercising regularly will help you to feel better about yourself physically and know that you are doing what you can to maximize your level of vigor.

    And then there is the issue of the new person in your life. …

    It is going to be a difficult conversation, but you are going to need to start explaining the situation to her. If you want a real relationship with this woman, it has to be based on honesty and trust above all else. And in having that conversation you need to focus on what you are doing to “make the best” of the situation. It’s OK to tell her that some of this can “get you down” at times, but the important thing is going to be to focus on the positive and how you feel about her and why she needs to need to know the whole truth, so that she is under no illusions or mistaken expectations. I think you know what you are going to need to tell her. What you need to work out is how to tell her while making it more about her that about you. And give her lots of opportunities to ask questions rather than just doing a “data dump” on her. OK?

    I hope that helps.

    Amy

  8. Thank you Amy. My new partner and I are talking things through.

    As she says, there are so many other ways to make love, as well as the “obvious”. She has put me on a diet, and has dragged me kicking and screaming (not) to early bed each night since reading this — to make me relax.

    And I don’t want to change him for another man, he’s lovely even with this issue x Nina

  9. Thank you Amy, I will try my hardest to do as you say. I must add, we love experiencing the lovely normal, everyday things together, and look back on our lives to realise that we have missed such a lot by not being together all these years, so really the normal things are very precious to us.

    Kind regards,

    Patx

  10. Dear Amy,

    I am, sadly, about to end a 30-year marriage with my husband, who had prostate surgery 15 months ago. Like most prostate cancer survivors he has complete ED, as well as a significantly lower libido. He is also severely depressed, has completely let himself go physically, and drinks too much.

    I am so lonely, so distraught that I simply can’t go on. All communication (always a tough thing for us) has stopped, and I am no longer willing to be the one trying to fix this mess.

    Here are my concerns:

    (1) I am so angry. I’m angry with the medical establishment that they did this to us and then left us completely alone as we struggled to deal with it. I tried everything I could to get us help — even as soon as he was diagnosed — but it just felt like no one took our intimate life seriously. While he was focused on getting rid of the cancer, I was concerned about our relationship — but no one cared about me, I wasn’t their patient! So, they saved my husband, but wrecked his life.

    (2) I’m also angry that there is a lot of discussion in the news about diagnosing/treating prostate cancer, but so little about the quality of lives of the men and their partners after they are treated. It all feels like a big lie, or a cover up.

    (3) I don’t want him to be alone the rest of his life. I sincerely hope he can meet a woman who, perhaps, has different sexual and intimate needs than me. But how will he ever be able to communicate with someone new, when he can’t even communicate with me?

    Anyway, what a heartbreaking mess this is. Thank you for being on line to discuss this honestly, and to give a voice to the other victims of this awful disease.

    *****

    Amy replied as follows:

    Dear Clara:

    I am probably going to get a lot of negative comment from some people after this, but I feel obliged to say what I think is right.

    First … Far too many men (and sometimes far too many of their family members too) don’t do anything like enough homework when they hear the word “cancer.” In some cases, their doctors also fail (badly) to give them a full appreciation of the risks associated with treatment, but that is not always the case. What my experience has told me is that prostate cancer is over-treated for a host of reasons, but a great deal of that has to do with men simply not wanting to really look at what they are getting into and not listening closely to what they are being told … and sometimes other family members pushing them into treatment that may well be unnecessary.

    Second … While I understand that the sequelae, side effects, and complications of treatment of prostate cancer can come with all sorts of aggravating impact, I no longer have a lot of sympathy with the male depression that seems so common. People lose eyes, legs, arms, all mobility, their homes, their children’s lives, and are able to rebuild positive lives afterwards. The will to just deal with what happens in life has a lot to do with how other people see us … and a man who lets the complications of localized prostate cancer make him severely depressed and start drinking heavily is hardly going to be a person that most of us would want as a regular acquaintance, let alone a soul-mate. Sometimes we all need to be able to swallow hard and say, “Okay … so this is something I just need to deal with.”

    Third … I think you are right to have decided that you needed to “move on”. The ED is one thing. The loss of any will on the part of your husband to make himself helpful, amusing, entertaining, and even (God forbid) sexually desirable to you is quite another. It demonstrates a degree of self-centeredness that I don’t see as justifiable. The fact that you are still willing to worry about whether he can “pick himself up and start over” demonstates (at least to me) the clear difference between where you are coming from as opposed to where he is coming from. People who sit and feel sorry for themselves become very unattractive very rapidly. At least if we know someone is making an effort to cope, we are willing to cut them some slack, give them some time, and even help them to actually succeed.

    Fourth … You have every right to be angry. You are going through the same sequence of shock, denial, loss, anger, and acceptance as does an actual cancer patient. Anger is a very normal step along that path under the circumstances. But just as your husband needs to let go of his denial and loss, you will need to let go of the anger. After a while you will find that it is simply not constructive … and you will need to move beyond it. Could society be doing a better job of dealing with this disorder? Of course it could. And some members of the medical community and the news media and others are actually trying very hard to do that … but there is a long way to go.

    Last … By no means do I believe all men have this response to prostate cancer. For a strikingly reverse extreme, one can look at this web site someone told me about just the other day … built, apparently, by a couple who feel that his prostate cancer actually revolutionized their intimacy in a very positive way. (Whether everyone would be able to have that respnse is perhaps open to question, but clearly some people have this type of coping mechanism.) This may not be possible for your husband. We are all different. But we should all have the determination to make the best of our lives, regardless of the hand that we get dealt by providence (or even by a poor physician).

    I have no idea whether this will be of any help, and maybe it will seem “cold”, even to you. I hope not … but it is part of how I have come to see this little piece of our world over recent years.

    Amy

  11. Thank you Amy, It does not seem “cold.”

    I guess it isn’t news that some people cope better with adversity than others. While bad things of all sorts can strain some marriages, others will overcome. Perhaps the tough thing about prostate cancer side effects is that they really can impact a couples’ intimacy – just when you need it the most. I know couples who have overcome horrible things – loss of children, bankruptcy, etc. – but they’ve overcome them together, I suspect at least in part, because they’ve been able to find solace in familiar arms and familiar closeness. Somehow prostate cancer robs too many of us that, leaving such a terrible hole.

  12. Dear Amy,

    I need someone to talk to and maybe just typing this will be helpful enough.

    I met a really nice man 3+ years ago, 20+ years my senior. I was 48 somewhat settled; he 68; we dated and he was the perfect gentlemen. As time went on I began to have some feeling for him, not love but feelings.

    As we continued to date, he had to go in the hospital to have surgery. He said it was nothing serious and I took his word on that. What I didn’t know was, he was having an implant inserted due to ED. I didn’t know he had had prostate cancer almost 15+ years ago. He has always been the shy type and I just thought it was his way. He always was the type to avoid the lights being on, covering up, and he would shake if I tried to touch him. Like I said, him being older I took him as shy and that really didn’t bother me because I understood. (I thought it was refreshing.)

    One day I asked him if there was anything that he needed to tell me because something wasn’t right and I couldn’t put my finger on it but something wasn’t right. With the surgery he has a leak and I didn’t know he had to wear a pad. I was getting a slight yeast infection because we stop using condoms. He went and poured himself a big drink and confessed his ED, cancer, and a few other things. He was surprised that I didn’t freak out. I stayed calm and asked why he didn’t tell me before we got involved. He said he was scared and he was afraid of losing me.

    It took a few months but we talked a lot and moved past that. A year later we got married and I don’t know what happened. He started acting like an typical man: full of himself. I have been a stay at home wife and now he tells me that I need to work, that we don’t have enough money and other couples work and I should get a job to pay my bills. I married him for security, and he knows that, and I have accepted everything about him and will not hold it against him in exchange for the life that I have now. I confess sex with him has been a challenge. How do I tell him without bringing up the subject of his past. He’s been experiencing a few medical problems and I can’t help but wonder if he thought I would be his nurse and not just a wife.

    *****

    Amy replied as follows:

    Dear Gator:

    So I have been looking at your implied “question” (“How am I meant to react to this change in behavior?”) for most of the morning.

    There is a well-understood set of male behavior patterns in which men who initially come across as charming and mild mannered later appear to change their behaviors and seek to become controlling of the behaviors of others (to a greater or a lesser degree). Such behavior change can often occur once the male in question believes that the (in his mind) “subordinate” partner has in some way become “his” to control. Why such behavioral change occurs, I do not know. I am not a psychiatrist. What I do know is that confrontation of such men can be difficult and sometimes even dangerous.

    The bottom line here is that you did not “sign up” for what is now being suggested and implied. Why it is being suggested and implied, I have no idea. It could be no more than fear in the mind of your husband that his health is failing and he needs help.

    Clearly you do need a way to confront your husband about these demands and get the cards on the table. However, you may want to be careful about how and when and where you do this since he may not react well to such confrontation.

    Please understand that I am not trying to suggest that there is necessarily any great risk of violence here. He may just do what he did last time: get himself a stiff drink and say, “I’m really sorry. I’ve been feeling really stressed because it doesn’t look as though I’ve got the savings and the pension income that I thought I was going to have. I haven’t behaved very well about it have I?” On the other hand, you might want to initiate this conversation somewhere where, if he does have a bad and explosive reaction to the implied criticism, there are going to be other people around.

    The other thing is that “his past” may all be very much a part of this, and bringing it up may be a necessary part of the necessary conversation. On the positive side, you have already been through one conversation like this together, and you were both able to get beyond it. If you aren’t able to tell him that you don’t understand what the heck he thinks is going on in his head, then there really is a problem. Every so often, most wives need to be able to look their husbands square in the eyes and say, “Jimmy … You’re a great guy and most of the time I love having you around … but sometime you start to behave like Clint Eastwood on steroids and it is significantly less than attractive! So … what’s going on?”

    I hope this is of some help.

    Amy

  13. I think I know what the problem is. He went to church today and before he came home he had a drink or so and just snapped at me. Could this be playing a factor because Clint Eastwood comes out more when he drinks.

    *****

    Amy replied:

    Dear Gator:

    Alcohol rarely helps people to deal well with fundamental issues of emotion and communication. On the other hand, in and of itself, alcohol is also probably not the basic problem, which is likely to be much more deeply seated. People who drink and then snap at others usually need to work out how to deal with something that the alcohol is helping them to avoid dealing with.

    Amy

  14. What happens if a man doesn’t have sex after prostate cancer? Will he need more surgery?

    *****

    Amy replied below:

    Dear Robin:

    You’ll need to excuse my naivety, but I am a little puzzled by your question.

    Are you asking about what happens if a man is unable to have sexual intercourse after being treated for prostate cancer or are you asking what happens if he is simply unwilling to have or uninterested in having intercourse after prostate cancer?

    The treatment of sexual dysfunction after a diagnosis of and treatment for prostate cancer depends on many related factors. There is no “simple” surgical solution to this problem, although surgery would certainly be involved under some circumstances.

    If you can give me some more information I can try to give you a better answer to your question.

    Amy

  15. Dear Amy:

    I am an 83-year-old man first diagnosed with prostate cancer in 1996. I’ve survived all these years under the excellent care of Memorial Sloan-Kettering and a variety of medications (Lupron, Casodex, etc., etc.), all of which ultimately stopped working. For the past year, I have been doing excellently well with Zytiga (PSA currently at 0.35) which was provided for 1 year by J&J’s Patient Assistance Program. Now they have denied (but are re-considering) my application for another year of the drug under patient assistance.

    My concern with this situation is not only for myself but for the thousands of middle-class prostate cancer patients out there who are neither wealthy enough to pay the retail price of $7,500 per month nor poor enough for the company’s stringent and somewhat Byzantine procedures in order to qualify for patient assistance. So, in effect this makes the drug available to the wealthy and to the indigent, leaving a vast number of middle-class patients in a very precarious situation of having to dismantle retirement savings and/or otherwise imperil the remaining financial stability, well-being, and dignity of healthy spouses and families, all of whom can expect many more years of life.

    While it is understood that developing these “miracle drugs” is a very costly business, it would seem to make far more sense for these drugs to be marketed to a much wider (middle-class) market at affordable prices than to restrict sales to the segment of the very few very wealthy and the continually growing segment of the very poor.

    My question to you is: Why? And do you see any end to this huge inequality? And how can we organize to pressure change in this?

    *****

    Amy replied as follows:

    Dear Rod:

    The entire financial structure of the American health-care system is Victorian in both concept and execution, and it is rife with “special interest” groups of 1,001 types who all either want it to change to give them greater benefits or not to change so that they don’t lose the benefits they have. The whole thing is a walking nightmare, and while I certainly don’t agree with everything in the Affordable Care Act, I also see that act as simply a beginning toward a rational, modern health-care system in which patients know exactly what things really cost and health professionals (including the pharmaceutical industry) are all required to explain why things cost what they do so that people can make real decisions about “value”.

    The way drugs are priced today is driven by what the law allows drug companies to do and what the law allows physicians, hospitals, and payers to do. Since the relevant laws were all written with massive input from the lobbyists for all the different interest groups, we have the inevitable dogs’ breakfast in which the priorities of the middle class came last because they are the least well-organized with the least lobbying power.

    I have absolutely no meaningful idea how to change the current status quo to something more sensible and equitable. And as far as I know, at this point in time, neither does anyone else. On the other hand, almost everyone understands that the current system is crazy and unsustainable. But for everyone who wants to make changes in director X or direction Y, there are always five other people who will immediately say, “You can’t do that because ….”

    This precise question came up earlier today during a phone conversation Amy was having with a friend in the pharmaceutical industry. Amy’s friend knows that the way the system works now is nuts, but he has no more idea about how it could be changed than Amy does, because investors in the pharmaceutical industry take large, long-term risks with their investments and so they expect a very high level of profit when profits are forthcoming.

    The only people who have the power to actually make any sense of all of this would be Congress … but in case you hadn’t noticed, our elected representatives are all more interested in arguing about philosophy than they are in actually doing things in the interests of the American people ….

    I wish I had answers to your questions …. I just don’t! But I am glad that drugs that have been developed over the the last 30 years have been able to help you for as long as they have. And I hope that J&J will renew your patient assistance for at least another year.

    Amy

  16. Thanks for your response, Amy.

    I’m sure you can understand how amused some of are to watch the currently most popular series on televison. Of course, I mean: “Breaking Bad” about a mild-mannered high school chemistry teacher who learns he has inoperable lung cancer. He has no money and many debts — a condition he does not want to leave saddling his wife. So, he turns (in broad parody, played straight) to producing crystal meth in an improvised lab — and an ever-spiraling life of crime. Very funny — but also dead on with all of us with advanced cancers and facing humongous charges for those Big Pharma “medical drugs” that have the promise of extending our lives.

    Needless to say, not a path any of us intend to follow in real life, but a stark picture of the conundrum we face.

  17. Dear Amy,

    I’ve been looking for a “site” like this since my husband was diagnosed with prostate cancer at the age of 54, almost 10 years ago.

    We went through various stages of handling the trauma and changes; he was sure he would be “cured” because the doctors and hospital claimed a “high success rate”. Well, that did not happen.

    I learned to pretend I was having a great time with 30 seconds of foreplay and 45 minutes of waiting while he was working with the machinery he was told to purchase until he came back to bed. It was all very difficult and awful; he had terrible side effects, and continues to do so, and for a man who did not like to talk about any of it, it was incredibly stressful. I was supposed to pretend that everything was “just fine”, and of course I was glad the cancer was gone. But it was at a high cost, and he was unprepared.

    The stress, for me, has been intense. He has stopped touching me, kissing me, hugging me. I broke down and told him there was a wall in every aspect of our life, because I was not allowed to touch him, or initiate affection, and our bed had an invisible wall. Sex stopped 4 or 5 years ago; he moved to a separate bedroom, and we are housemates. I finally bought my own sex toy — last woman of my generation, probably — and have been on various antidepressants. Not him. I feel we are living a lie to our grown children and friends and I hate it. I care about him deeply, but this is not how I want us to spend the rest of our lives.

    We only attended the local “support group” twice, at the very beginning, but he did not find the other men’s discussion helpful — he had made his choice (surgery), and found the life afterward to be a whole new world. No one wanted to talk about that. I was the youngest woman in the woman’s group and felt our marriage was too stressed to act perky and hopeful when some women were facing critical health situations with their spouses.

    He has found, in the past year, diversion and happiness in exercise. It relieves his stress, gives him something to do, and the instructor is a young woman. He goes every day of the week. It is convenient to his work and at the crack of dawn; it is completely inconvenient for me, and I have health issues.

    I feel the medical establishment in this, as in many other situations, felt it “did its job” by diagnosing his cancer and then giving him choices in how to deal with it (cut it out). No one talked much about what would happen afterward, and for how long (side effects). No one provided a counselor for me, or rather, I did not know how to find one. He refused to attend or seek sex counseling, so perhaps a lot of this is his “fault”.

    I know many men and woman lose a limb, or become seriously disabled from illness or accidents, and have had chronic pain issues myself. But it has been a rotten 10 years, it was a rotten 3 years, and it is difficult to imagine a future “retirement”.

    He just does not want to acknowledge the situation.

    *****

    Amy replied as follows:

    Dear Anna:

    I have read through your message above four times now. I would like to have something truly brilliant to suggest. Sadly, I just don’t!

    Obviously this is by no means the first time the inability of the patient to “acknowledge the situation” has come up. It is one thing to be patient and caring and give one’s husband or partner time to adapt to a new reality. It is quite another when that adaptation fails to occur. At some point, that new reality has to be recognized, acknowledged, and acted on. Ten years seems like more than enough time to me.

    Your situation reminds me of watching politicians “come clean” about their serial misdeeds while their “loving wives” stand passively behind them being “supportive.” At some point one inevitably has to ask, “Who is kidding whom?”

    I have no idea whatsoever what you can do at this stage to recover from what has clearly been a complete breakdown in communication between you. Is someone to “blame”? Probably not. You were both faced with a whole new and complex situation, and he just seems to have been unable to adapt. It happens. However, you can hardly be expected to just lie there like a doormat and accept his approach to what has occurred.

    The question now is, “If he can’t accept reality, are you going to accept that he can’t accept the new reality and (potentially) never will? And if so, when, and by doing what?”

    I have a difficult time thinking that this can “help” in any meaningful way … but I just can’t think what else to say.

    Amy

  18. Hi, Amy,

    As a prostate cancer survivor and intimacy coach I’ve been deeply moved by the poignant questions of prostate cancer patients and their partners and by your responses to them.

    Next month I will be a panelist at an event in Dallas sponsored by Cure magazine. May I have your permission to cite your thoughts re: two cases involving some patients’ and partners’ disappointment with the medical establishment leaving them high and dry? Also, may I distribute both postings in their entirety to the 75 participants at the conference, with full attribution to you? I refer to one in June and the other this month (October)?

    Continued success in bringing profound awareness and comfort to your many viewers.

    Rabbi Ed Weinsberg, EdD (www.LovingAfterCancer.com)

    *****

    Amy responded:

    Dear Rabbi Ed:

    First, thank you for your very kind comments. I just do what I can, and I certainly don’t consider myself to be any sort of expert on anything. I just try to help people who need to talk to someone.

    Second, thank you for asking permission to use and distribute the information you refer to. Many people today wouldn’t even ask, but I am rather old-fashioned about that sort of thing, so I appreciate it.

    Third, if you really think it would be helpful, please feel free to use these questions and my responses as you see fit. And if you think there are better or alternative answers to these types of problems, please do let me know … because I always feel I know so little when they come up.

    Enjoy your meeting in Dallas.

    Amy

  19. To Amy, and Rabbi Ed,

    First, Amy, thank you for your thoughtful and honest reply.

    If my October posting is one you are interested in sharing, Rabbi Ed, please, please do. I just searched for CURE magazine ["Combining science with humanity, CURE makes cancer understandable" -- maybe it wasn't around when my husband was operated on, maybe he sees it at his doctor's ... I doubt it ... but I never heard of it til now], but do oncologists, especially prostate cancer specialists and urologists read this? Patients need the straight scoop … to understand the impact on their lives, and their abilities. The surgeons or physicians making the cut, or writing the scripts, rarely have a clue. They see so many people/they are allowed so little time, etc. Some, we know, have seen too much mortality in the course of their practice and have lost some empathy.

    Do I regret my husband being alive the past 10 years, instead of, possibly, gone because of raging prostate cancer? Of course not. He has been here, with his growing/now grown family; he has achieved much in his chosen work, and he has found fulfillment in many things … without sex, without me (because he withdrew from me). He helps me with things, we visit the children, everyone thinks he is the World’s Greatest Guy (and he still is, just not in all the ways they think he is), but there is an invisible wall throughout the house … do not pass, do not touch.

    What we have here is a huge failure to communicate (sorry, taken from a movie), and … few physicians want to do it.

    When my husband was diagnosed, he knew nothing about prostate cancer. I knew immediately: impotence is the main side effect. We read about various prostate cancer treatments available when he was diagnosed. Books and pamphlets and three or four consultations and so much pressure because of his particular situation … we were told: Make your decision now. As if in another 5 minutes the cancer would metastasize and it would be our fault for dawdling, and then … the point of no return. This, all implied, was certain death.

    Shock … He could not have handled it, maybe, if someone had said:

    “This medicine/treatment/protocol/surgery is good for what we know ails you now, but the immediate side effects and those possible over the long term are practically unforgivable. But you won’t be seeing me by then, so I hope you don’t have problems with any of the side effects I am cleverly minimizing.
    And, of course, I sure am glad it has not happened to me because I would probably go crazy, and this is my field.”

    Thank you for giving me a space to vent.

  20. Dear Amy, Anna, and Rabbi Ed,

    Such a sad conversation. Rabbi Ed, feel free to use my comments, but this is not my real name.. Anna, how I wish I knew you! Your life sounds just like mine. I might add that there is another women’s forum (http://www.ladies-prostate-forum.org), but it is so depressing I can’t even go there anymore.

    I was in a traffic jam a couple of months ago, and there, next to me, in his very fancy Porsche, was my husband’s surgeon. First I wanted to ram my car into his. Then I wanted to roll down my window and yell, “You broke my husband you &$=+/! and you wrecked our lives.” Irrational? I suppose, but there’s the daily anger.

    I’m even angry at a doctor that was doing a fellowship with our surgeon. He was Muslim, and was literally incapable of looking at me, answering my questions, or addressing my concerns. I remember like it was yesterday him grinning while telling my husband, “You may never have a spontaneous erection again, but, don’t worry, there are lots of things we can do to help you.” If I ever run into that doctor I cannot be responsible for my actions.

    The last time I went to an appointment with my husband, in the waiting room was a young (50s) couple, him with his catheter bag, her looking worried … and it made me so sad I started to cry and I had to leave. I just wanted to yell at them, “They won’t tell you this, but you’ll never have sex again.”

    I asked his doctor about the book, Saving Your Sex Life … (which I was reading, but my husband wouldn’t) and he blew me off by suggesting the author was in the pockets of the pharmaceutical industry. His treatment included virtually no penile rehab, and my husband was 100% on board with everything that doctor said. I often wonder if he regrets that now. (Of course we don’t discuss it, we don’t discuss any of it. …)

    My husband was my best friend, a wonderful father, loyal, honest, hardworking. We always had mismatched libidos, but I’d be able fix things with us if the dry spell lasted too long. This I simply can’t fix. I have too much resentment, too much anger, and frankly, I just don’t know how. My husband shows zero interest in me. Anna — you speak of the “wall” — oh, how well I know it! I moved into a separate room about a year ago. (He had surgery 19 months ago.) I saw a lawyer in February, and proceedings are under way, although I am still at home. Thirty years is a long time to love someone, and the guilt I can’t even describe, but I truly feel that I need to save myself because I can’t save us. I’m fit, attractive, very active, and I am just so lonely it’s unbearable. Maybe I’ll never find someone else … I know that statistics aren’t on my side … but I can’t live like this. We planned such a nice retirement, travel, maybe a new patio home, grandkids, … all seem hopeless now. The divorce will be financially terrifying (especially for me).

    My husband just seems happy that the cancer is gone (so far anyway). I’m even angry that he isn’t angry about what it’s done to us, as a couple. I’m angry that he doesn’t seem to miss me, and that he has consistently not listened to my concerns (especially early on when I was giving them voice). Now that I am leaving him he is angry — very angry — and upset, but not upset enough to come to me and hold me, or anything.

    Sorry for the rambling, everyone. Anna, my heart breaks for you. Thank you Amy for this forum, and thank you Rabbi for caring about the lives of those involved with this awful cancer.

    *****

    Amy wanted to just add a few words …

    Clara:

    Please repeat after me … “This is not my fault. This is not my fault. This is not my ….” and do this regularly and often!

  21. Hi Amy,

    Thanks for your remarkable comments and insights. … It’s an enormous relief to know that I’m not alone out there.

    I’ve got a question that’s kind of, well, intimate. I’ve tried looking it up, and only get poor “porn” responses.

    I’ve fallen (quite unexpectedly) in love with a dear friend of more than 20 years, who had his prostate removed 3 years ago. So far, so good. We’re a great couple, and sex is honest and lovely. Although rarely penetrative. That’s okay with us.

    However, now his PSA levels are up, and he’s opting for radiation therapy. That’s okay, too — we’ve talked about side effects, and we’ll deal with what comes.

    My big question is … although he can’t ejaculate, he says he still has a form of orgasm. I’m struggling with exactly what that means, and what I can do for him to keep that. If he can’t maintain an erection, how can I keep stimulating him? What the hell is this “dry orgasm”?! He’s terrified of losing even that, and I’m scared too. I’ve read the comments from the women above, and I feel such empathy for everyone — I don’t want to lose the man I’ve spent 40 years figuring out that I adore. I’m worried that it was sexual attraction that got us to where we are, and that if he loses his libido completely, he’ll lose interest in me, too.

    When we first struck up a very close relationship (some months back), he was quite resolute about not going through with more treatment, given the side effects. He seemed fatalistic. He’s only 50, and couldn’t seem to face the possible impotence and incontinence. Then, as these things do, we became intimate and more — and it’s given him the spark to continue with treatment, and side effects be damned!

    I’m just frightened, I suppose. … What happens from here? What is radiation treatment going to do to him? How can I continue to be sexually intimate with the man I love, and is that even possible?

    Well, thanks for listening. Any advice is welcomed.

    G.

    *****

    Amy replied:

    Dear G.:

    So first let’s deal with the “dry orgasm” issue. Here’s a link that may help you to understand what’s going on.

    Second, even if your friend becomes unable to have a physical erection (they all do in the end you know … men, I mean), this does not necessarily stop him from experiencing orgasm. So you can stop worrying about that one!

    Which brings me to the key point. None of this is about “sex”. It is about the actual intimacy and the ways you find to give each other pleasure. As you have clearly discovered, what appeared to many of us to be the key issues when were were 18-20 years old should have long been bypassed by an understanding that intimacies come in 1,000 different forms. Of course you are frightened by the idea that what seems to have been working for you both might vanish overnight … but I don’t think it will, and even if it does, I will bet that you both have the imagination to come up with new forms of intimacy.

    Intimacy, like life, is a journey. It comes with exciting surprises and unexpected shocks and periods of routine sameness that need to be overcome! So I would suggest that rather than worry about what might go wrong (which is, of course, a very natural thing to worry about), you focus on how to expand the current levels of your intimacy, with a specific focus on things that will still be fun regardless of what happens after the radiation.

    Oh … and there is one thing that is not allowed. Neither of you is allowed to retreat into gloom and self-pity. The occasional bout of feeling sorry for oneself and sulking on the sofa is one thing. Making that a habit is where the line gets drawn. That habit is unacceptable for all concerned! Recommended treatments include severe tickling with the nearest feather duster and other things I shall leave to your imagination!

    Amy

  22. Hi Amy.

    I have read through all of the questions and answers posted. Not only am I now terrified, I am sooo sad.

    My 44-year-old husband was just diagnosed with early stage prostate cancer. The urologist said we could consider radiation seeds or prostatectomy and, being a surgeon, he would recommend prostatectomy. My husband has struggled with ED the last several years. He takes SSRIs and when we got tests back his testosterone level was 200; that and his prostate is enlarged to 36 grams. We were hoping the urologist visit would help us to fix the intimacy issues but now it looks like things are about to get much worse.

    If we elect the prostatectomy, are we pretty much guaranteed no sex life? Do we run the same risks with radiation seeds? I know some women are fine with “other things” but I have been living with half erections and sex maybe five times a year. We were looking for a cure for ED and now I feel lost and honestly angry at the prospect of not having sex again or for a year or more. I feel so selfish but we are still so young I am not ready to give this up and no, “other things” won’t cut it for me. Would you say more people that have had this procedure would say no don’t do it try something else like the radiation seeds? Am I overreacting and is the likelihood of him being fine a good percentage? If he has the prostatectomy, wouldn’t the removal of the enlarged prostate holding him back from erections now be gone? If he has that, really, how long till we could have good sex again? I know this is a lot but I am stressing out just a little.

    *****

    Amy replied:

    Dear Stephanie:

    Of course you are feeling lost and angry and “stressing out just a little”. Let’s see if we can clarify some of the issues.

    First, you are dealing with two quite different problems here: the ED and the prostate cancer. The most likely reason for the ED (a low testosterone level) may well not actually be connected to the reason for the prostate cancer. However, giving testosterone therapy to a man who has been diagnosed with prostate cancer is a very controversial subject (and there are arguments for and against this in specific types of patient but giving testosterone therapy to you husband at the moment is not something anyone would be likely to recommend).

    Second, responses to the various forms of treatment for prostate cancer are very individual for a whole variety of reasons. For example, younger men are much more likely to recover good sexual function after any type of treatment than older men, but — without some other form of treatment that is specific to your husband’s ED — treatment for the prostate cancer is almost certainly not going to improve his ED or his sexual function.

    So the two key factors here are going to be: (a) how to deal with your husband’s prostate cancer (which also depends on how aggressive his cancer is, and you haven’t mentioned any of that) and (b) what could be done after his prostate cancer treatment to optimize his ED/sexual function?

    I can’t lie to you about this. It is a really complex problem and there are no easy answers. What you both need more than anything else is some really good advice from an expert in male sexual function who also understands the implications of your husband’s diagnosis of prostate cancer. There are a rather small number of these specialists, and so a lot depends on where you live and whether you are able to identify someone who can help you. There are certainly, for example, such individuals in major centers on the East Coast like Boston and New York and Baltimore.

    The other thing that may be relevant here is the size (volume) of your husband’s prostate. If it weighs 36 g then it is about three times heavier than the average “normal” prostate, but when it comes to treating prostate cancer with radioactive seed implantation (brachytherapy), it is usual to make sure that the prostate has a volume of 45 cc or less, which seems unlikely in your husband’s case, and this has implications about whether brachytherapy is even a real possibility for your husband unless he was to have androgen deprivation therapy (ADT, also known as “hormone” therapy) beforehand to shrink his prostate … and that comes with another series of potential issues.

    I know you are feeling selfish in asking all the questions you are asking, but what you are actually being is realistic. By being able to ask these types of question, you are accepting and facing up to the truth about what is going on, and of course that isn’t an easy or comfortable thing to do … but it is not selfish. I can’t answer all your questions for you because, as I said at the beginning, responses to treatments for prostate cancer are so individual and your husband is relatively young. However, there is one thing that I can tell you: I do know of couples in whom the man had a penile implant after treatment for prostate cancer for whom this was extremely satisfying for all concerned. This is a radical solutioon to the problem … and I am not suggesting it is the only one by any means, but …

  23. I started my treatment on February 2013. My doctor put me on a shot every 4 months and a pill which I take every day called bicalutamide 50 mg. So far I have no side effects. In October 2013 I had my PSA taken and it was undetectable so my doctor told me that if the next time he sees me, in February 2014, the results are the same he will take me off the treatment.

    I am confused because I have heard that when you start hormone therapy you should be always on it (better results for the future) and on the other hand you should take breaks when your PSA is very, very low. As I stated above, my doctor wants to take me off the treatment if my PSA is undetectable. I told him my thoughts and he said, “I will take you off the the shot ” and then I told him how about the pills and he said “If you wish you can continue taking them … it is your decision”.

    So my question is, will I gain better results if i continue taking only the pill even though my PSA is undectable? So is “start and stop” hormone therapy as effective as continuous therapy?

    Thank you

    *****

    Dear Jimmy:

    I see that you have already asked the same question on the InfoLink social network, and that the sitemaster had responded to your question.

    I am sorry but I really can’t provide any better guidance than what the sitemaster has already offered you. There really is no “right” or “wrong” here.

    Amy

  24. My husband and I are in our late 50s and have been married for 8 months. He had prostate cancer surgery about 3 years ago. So, I never knew him as “normal”. There is an openness between us in companionship, and we connect spiritually, mentally, and are active socially. However, although, at first, he was attentive to me emotionally and physically, he is not so much now.

    We used to talk on the phone for hours and hours before we were married … we dated for about a year … and he communicates well when he wants to. When we got engaged, he said that we would work together on how best to make love once we were married … that he would go to the doctor and see what could be done. He has not pursued it.

    He’d told me that his erections are weak, which I found to be true, but he does have some response. He enjoys oral sex and is pleased with how I please him. But he tells me that he doesn’t necessarily have the desire and can go indefinitely without it. Although our frequency started off nominal, it has dwindled off even more. No matter what I do, he does not respond to me … and basically just sidesteps any talk of sex. If I bring it up lightheartedly to not pressure him, he still avoids it by just making a little joke about it. He has had some pain issues with his back and he blames the infrequency on that, although he is active in work projects that are physically demanding and will work even when he is in pain.

    I’m a giving, loving person and enjoy sex. He knows this but doesn’t seem concerned that I’ve got higher than normal desires even though he has almost none. It seemed at first that he was going to be attentive to me. Yet, it has been almost 2 months since he has even touched my body in a sexual area or way. He holds my hand and gives me kisses, but that’s all. It has caused tension because he will not talk about it. We had a “discussion” the other night that turned sour because I am so disillusioned about this wall I feel between us. Although we spend a lot of time together, he is constantly distracted with business e-mails or the dog or work around the house.

    I think, in his mind, we have “us” time, but to me, we do not. The lack of emotional intimacy and romance are harder to deal with than the lack of sex. I’m so confused because he tells me he loves me all the time. But I don’t see how we can build a marriage on such a limited scope. Before you suggest it, he would never consider counseling … He had tried it before and said that all he did was hear himself talk with no feedback from the counselor.

    *****

    Amy replied:

    Dear Debbie:

    You write that “There is an openness between us in companionship, and we connect spiritually, mentally, and are active socially.” However, it seems clear to me in the rest of your message that you and your husband are not, in fact, connecting mentally about something that is extremely important to you. He is either not hearing or not responding to your expressed need for greater intimacy.

    Without wishing to be disparaging, men tend not to experience the same level of need for intimacy as women, and so they tend not to recognize its importance to the women in their lives. They also tend to miss the distinctions between intimacy and sexual activity. (Not all forms of sexual activity are necessarily intimate, and not all forms of intimacy involve sexual activity at all.)

    What you seem to be missing (if I am hearing you correctly) is his simple attention. He made time to give this to you when you were courting, but now that he has “caught” you, he doesn’t recognize that he needs to maintain the process of constant re-courting in order to keep the sparks flying.

    There is, of course, no simple solution to the underlying difficulty unless the pair of you can find a way to get past this problem. It is a communication problem that is affecting your ability to “couple well” emotionally and also physically. He is sending a message that he “isn’t interested”. He may be receiving a message that you are “demanding.” And probably neither of you intend to send these messages to the other. It so easily becomes a vicious cycle.

    So what to do?

    You both need to to start “dating” again. With each other. You need date nights. You need to go dancing or to go to the movies or do together whatever it is you like to do in common. You need to be able to flirt with each other. He needs to walk away from his work projects every so often and give you his undivided attention. You need to find ways to make him want to do that — and those ways very likely don’t necessarily involve sex — although ideally they will lead to a recognition on his part that sexual gratification is important for you.

    Is any of this helping?

    Amy

  25. Dear Amy,

    My father recently let us know that he has prostate cancer. It is Stage 1 and his prognosis is very good according to his doctor. He has decided to have his prostate removed, which, according to my mom, is the best option for him.

    Can you please give me advise on things I can do for my dad to keep his spirits up and remain positive? I don’t know what to expect and I am trying to stay positive myself. Of course my initial reaction when he told me was of shock and high emotion. Now that I have processed the news I want to give him the best possible support. Unfortunately, I live in another state than he does but I want to send him care packages. Also, do you know how long after his treatment will he be able to resume his normal activity?

    Thank you,

    C

    *****

    Amy replied:

    Dear C:

    Thank you for the excuse to stop cooking for 10 minutes! It never seems to stop at this time of year!

    So it is very hard for anyone to tell you things like “how long after his treatment will he be able to resume his normal activity.” Why? Because this will depend on a whole bunch of details, including, for example, the precise nature of his cancer; his own personal anatomical details (big prostate or small prostate; narrow hips or wide hips; etc.); his age and general physical health; the skill and experience of his surgeon; and more. However, what I can tell you is that most men do just fine; that they recover relatively quickly from the surgery today; and that complications are generally a lot less serious and a lot less common than they were 20 years ago.

    With regard to dealing with your Dad and the care packages, etc., my suggestion to you is that you let him “call the shots”. He and your Mom appear to feel that they have this under control, and your Dad (like most males) is probably going to want to just “get it done and move on”, so you need to be cautious about over-communicating about all this. You might do better to see if you can “set him a goal” without making it too obvious. For example, if he knew that you and any grandkids might be coming to see him in about 3 months time after the surgery, then he would (presumably) be highly motivated to make sure he was well recovered by then, and in the meantime you could simply ask your Mom if there was anything she needed help with and ask your Dad how he was doing, without making too much of a big deal about it.

    If your Dad has Stage I disease, he is generally in good health, and he has a good surgeon, he should do fine, especially if he has a positive attitude to life. The best help you can probably give him is your complete confidence that everything will be fine, and that you expect him to be back to doing all the things he normally does within a few weeks after his surgery.

    Amy

  26. My husband had prostate surgery in 2008. The urologist told us that he had spared the nerves, and after about 2 months we did have intercourse, although my husband was very aware of the length his penis having been shortened.

    Since that point in time, he is very self-conscious of urine leakage during any sexual activity. I think he is frustrated, and no matter what I say or do he is private about this and we are now celibate and have been for about 4 years.

    We have been married since I was 18 and he was 21, we are both in our 60s. I love my husband, he is my best friend and I wanted him alive, first and foremost. I expected sex wouldn’t matter as long as I have him and, truthfully, if that is how it has to be, I can live with that. But, I am so lonely, he has just emotionally abandoned me. He sleeps in a different room cause his back hurts, he watches TV half the night till he falls asleep. I work all week, so I am gone all day; he is on disability for his back and other issues, but he is never still. He builds, cleans, cooks, etc. He has dinner for me every night, whether I want it or not.

    I know he is trying to make up for what he thinks are his shortcomings, and I get that, but I would just love to have him hold me in his arms and cuddle or kiss. There are other sexual things to be done, but he has just totally turned his back on any of it. I think he feels that a man without a functioning penis is useless to the world.

    I feel bad for him, but I can’t seem to make him understand that that isn’t all there is. He just shuts me down, and I truly feel lost without him. I want my husband back emotionally. I would never cheat on my husband; I know he had a big fear of that when this first surfaced, but that isn’t my style. However, I need someone to hold and hug and kiss me, not just go about life as if we are roommates. Does anyone have any suggestions? One time he mentioned the pump, but if he isn’t going to have any sensation from it, I don’t want him to undergo any more surgery. He tried the vacuun but said that was too painful. The pills don’t do a lot. I think the “use it or lose it” factor may have been true, but I guess he is past the “lose it” option.

    *****

    Amy replied:

    Dear Debbie:

    I so often hear of stories like yours, in which the man seems to associate everything about his masculinity with the ability to have sex as though he is still 20 years old, and he utterly ignores and negates the importance of forms of intimacy that have far more to do with empathy, touch, conversation, and shared activities other than sex.

    At the end of the day, this is all about honesty in communication between the partners and about mutual understanding for each others’ needs and “happiness factors” and a determination to meet those needs. Obviously, no one else is going to be able to make that “happen” for you and your husband, but maybe I can tell you some things that may be important.

    First, I suspect that your husband may be suppressing enormous anger about all of this … and for all I know, you may be too! When I was younger, and I was angry, I used to have those old, cheap, orange pottery flowerpots everyone used to use, and I would take half a dozen out and throw them really hard against a brick wall so that they broke in an enormously satisfying manner! And I would tell anyone who saw or heard me doing it exactly what I was angry about. I haven’t had to do this much recently … but I still have some of those flowerpots out in the garage, just in case! Maybe you and your husband need to do something like that together! Many of us aren’t too good at sharing our anger with others and so we suppress it to the point and which it becomes truly destructive,

    Second, you are obviously both trying really hard to please each other by substituting “doing things” for honesty. I am no psychiatrist or psychologist, but I know enough to know that this is only a “temporary fix”, and you clearly recognize this too, but maybe your husband can’t see that yet. I’m not sure what to do about that … but “something” does need to be done.

    Third, I think you and your husband need to start “dating” again. You need to go on “date nights”. You need to find something you’d both like to try doing and go do it. You need to “break the routine” so that you can find new things to share and enjoy together and laugh about together, so that the intimacy can come back into your marriage without having to be associated only with sex.

    Finally, maybe you need to just go into your husband’s room one night and ask him to turn down the TV a little so that you can sleep, but tell him that you just don’t like sleeping alone ‘cos you like to be near to him. It may take a little adaptation on the part of all concerned, but it may also be worth the effort.

    Amy

  27. Dear Amy,

    I hear myself in so many of these comments. I am also full of anger. If I had known about prostate cancer, I would never have married any man. I wouldn’t have allowed myself to love one because what I have left hurts too much.

    My husband was 42 when he was diagnosed with Stage II prostate cancer; his PSA was 4.2. The doctors immediately sold him on a robot-assisted laparoscopic prostatectomy. They made it sound like he would be back to his old self in a few short weeks. A cakewalk they said. Don’t believe them. They lie.

    I did months of research prior to surgery and even talked with the doctor about watchful waiting but his mind was made up. When he told me the surgery date I began to shake. Never had I felt such out of control rage. I wanted to kill that surgeon. (Still do.) I knew surgery was wrong. KNEW IT!

    My research was to no avail. My husband had really made up his mind within minutes of hearing the doctor’s sales pitch. I pulled myself together and tried to support him. I was wrong. I should have fought, but in the end it’s his decision to make; we are just along for the ride.

    The day of the surgery was the last time I ever saw the man I once thought I knew so well. That was 19 months ago

    BTW … None of the drugs worked; the pump was painful. (They only gave him about a 50% erection.) The shots worked but freaked him out. He did it once and did achieve a 100% erection that lasted about an hour. (Which can be adjusted.) That was a couple months ago. At the time I was just happy the shot worked and I thought we would work through his needle phobia. That hasn’t happened.

    I asked if he still has desire and sensation. He says yes, but he does nothing about it. At least, not with me.

    He also goes to the gym and has tons of hobbies. I tried to fill the loneliness with hobbies but it didn’t work. I have tons of half-finished projects that just remind me of the quality of life lost. I can’t say “we” because he seems OK with what is left.

    When we go to bed he puts on earphones and watches videos about whatever the hobby of the day is on Youtube. I pretend to watch TV. Every time he opens his tablet I want to cry. … I have cried. He never noticed.

    He went from someone that was always touching me, hugging me, holding my hand, etc., to a stranger that avoids me. I haven’t complained. I’ve told him we will work it out. In retrospect I should be screaming.

    We married young and both our children are now away at college. I was a stay at home Mom. My life was my family. Now, I have no one. I’m alone always. Even if he’s here. I feel invisible.

    Men are so stupid. STUPID! It’s not about the sex. How many times do we have to say it?

    I don’t even care about the sex as much as the hugs and hand-holding and him just talking to me.

    I think I was sentenced to solitary confinement for life.

    Newly diagnosed … Beware doctors; they have money to make and fancy toys to finance.

    Yes, I’m bitter.

    *****

    Amy replied:

    Dear Caty:

    Of course you are angry, and of course you are bitter. … I am so sorry. … I hear every word you are saying. … I wish, … how I wish … that I had something — anything — really intelligent to say in response.

    Amy

  28. Caty,

    You just broke my heart. So many of us partners of prostate cancer victims either are living that, or were living that but left.

    I have no helpful advice. It sucks. Eventually you will decide to either sacrifice yourself or give up everything you’ve known. The worst part is that all the burden of that decision will fall on you, no one will be able to relieve any of it.

    A million hugs to you honey.

  29. Caty,

    I’m a wife of a 45-year-old who was diagnosed with prostate cancer a year ago. I’m dealing with the same heart-break as you.

    My husband underwent the same surgery and after the 6-month waiting period he started taking shots for an erection. They worked very well; too well! He would have an erection for 4 hours at times, no matter how he adjusted the shots. As a result, he got scar tissue on his shaft. The doctor insisted on an implant and said that at the same time he would clean out the tartar. After another long waiting period, we tried having intercourse. It was a total failure and has formed an invisible wall between us. This has taken a toll on our emotions. We love each other deeply and are best friends, but I’m like you. Wives are the forgotten factor in the problem of prostate cancer. We need a support group.

    *****

    Amy replied:

    Dear Becky (and Caty and others):

    There is an organization specifically for wives, partners, daughters of prostate cancer patients called “Women Against Prostate Cancer“. And it does have local chapters in some states.

  30. I noticed that my husband’s penis has shrank. I kept telling him whenever we made love but he kept ignoring me. … I noticed he spend much time in the living room and come to bed late when I am fast asleep likewise before when we both go to bed together. Then 2 months later he told me he has prostate problem. I said to him jokingly, “Did you have an affair?” because he said when he urinates is very painful. He is currently talking some antibiotics; he had a scan.

    So does it mean we no longer can have sex? Or our marriage is over?

    *****

    Amy replied as follows:

    Dear Ma:

    I suspect that your husband is upset and very worried. It is not entirely clear what his problem is from what you have told me. He might have an infection of some type (and that does not necessarily mean that it is a sexually transmitted one). Or he might simply have an enlarged prostate, which is giving him problems with urination. If he is over 50, the second possibility is very common.

    I also think you and your husband need to talk about this problem so that you both understand what is going on. Why? Because the problem is already affecting both of your sex lives and you need to have a shared appreciation of exactly what the problem is, what can be done about it, and how serious it is.

    Is your sex life over? I can’t answer that question. It depends on all sorts of things, including exactly what the problem is and whether it is curable. What I can tell you, however, is that failure to be able to communicate honestly with each other about a problem like this can have very real effects on marital relationships, … and men have a very hard time talking about health issues that affect their sexual capabilities. Your husband probably needs your help.

    Amy

  31. Dear Amy:

    I have been dating a man for about 15 months. He proposed after 9 months. I accepted. This month he was having severe back pain and needed to go see a doctor. I suggested a spine specialist as I do not believe in messing around and to get to a specialist. He went after a lot of convincing. They took an MRI and yes he has prostate cancer. It is level 4 (PSA of 266) and is attached to his pelvis, lumbar region, spine, both femurs, shoulder, and there is a mass on his kidney. This has all been confirmed with a CT scan, a PET scan, and a biopsy of the prostate. He admitted to me and the doctor that he suspected there was something wrong for the past 10 years! Yes, 10 years! I feel deceived. I feel that if he “suspected” something was wrong he should have got it checked out before dating someone, let alone proposing marriage. Am I crazy for feeling this way? I do not think I can trust him, and I have called the wedding off.

    *****

    Amy replied:

    Dear Judi:

    Are you crazy for feeling the way you do? No. Your reaction may be a little extreme, but it isn’t crazy. You were deceived, although I very much doubt that it was deliberate. Men just tend to ignore health issues until something really serious happens. They are male after all!

    I suppose the only other important question here is how you are going to feel after you have had the chance to get over the initial reaction. Are you just going to be able to walk away, or do you still love him in spite of the stupidity of not having addressed a health problem that was more serious than had ever occurred to him? You don’t have to marry him. And since he is probably already on some form of androgen deprivation therapy, you can forget about a normal sex life. But seriously, can you just walk away?

  32. Hi Amy.

    I agree with your assessment of Judi’s fiance, who was on a self-denial kick until push came to pain. However I can’t help but wonder why you stated that “since he is probably already on some form of androgen deprivation therapy, you can forget about a normal sex life.”

    I sincerely doubt that any of us prostate patients or survivors who have been through androgen therapy should “forget about a normal sex life.” Speaking as a prostate cancer survivor, and as an AASECT-Certified Sexuality Counselor and Intimacy Coach, I need to remind fellow survivors and their spouses that it’s up to us to develop a “new normal”. I’m convinced we can do so by redefining what we mean by “a normal sex life” and what we mean by “sex” itself.

    I have some specific ideas, including those in my Kindle book, Reigniting Intimacy and Sexuality after You’re Ill. This, includes the notion that sexuality need not goal-oriented with undue emphasis stress on male and female orgasm.

    Thanks in response to you.

    *****

    Amy responded:

    Dear Rabbi Ed:

    In no way did I intend to deny the possibility of a “new normal” when it comes to one’s sex life for those who have been able to accept and adapted to the realities of ADT. However, in Judi’s case, based on what she is clearly experiencing, what I had carefully stated was that the she could forget the idea of a normal sex life — something that a recently engaged couple, shortly to be married, might have expected during a honeymoon period and for a significant period of time thereafter. Before anything else is going to happen, Judi and her fiance will need to find a way to get through the acceptance and adaptation phases (if that is going to be possible for them).

    Amy

  33. No, I am not walking away; I will still be here for him. We have not had sex by the way; we were waiting for marriage before that occurred. So I suspect there just will be no sex, period.

    *****

    Amy replied:

    Dear Judi:

    I think the important thing is going to be for you both to take one day at a time for a while. You have both been given serious shocks to the system: him medically; you emotionally. It is going to take a while for you both to decide where you want to be as you work your ways through this.

    Amy

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