Sometimes even men can benefit from a female point of view on what appear, at first sight, to be exclusively male health issues.
Amy 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.
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I am in my fifth week of external radiation for prostate cancer. My wife is afraid to do oral sex for fear of being radiated. Is it safe for her or not?
*****
Amy responded as follows:
Dear Sonny:
You can certainly tell your wife that external beam radiation does not make your prostate or any other part of your anatomy radioactive. From that point of view she has nothing to worry about.
HOWEVER … Has it crossed your mind that the reason she is giving you for not wanting to perform oral sex is simply a way to avoid doing something she just doesn’t enjoy? Your pleasure in this activity may be rather greater than hers. It might be wise to enquire whether there is a deeper reason to her “fear.”
Amy,
How do you deal with the fact that you feel you have let your husband down after prostate surgery. These are my words, not his. After 51 years of marriage he thinks I am wonderful, but our personal life has changed because I am afraid I have let down the man I adore. He says it is his fault; I say it it mine. And it is no one’s fault. I think we are both afraid we will disappoint the other. He is the only love of my life and my reason to live. At 77 he is still the best dancer, a practicing attorney, and the most fun person I have ever known. He is well read and we still can talk for hours about books or ball games, philosophy, whatever. He is my life. I must do better. Any advice?
Amy answered as follows:
Dear Ann:
I suppose there is a key question here that has to do with why you are both having these reactions to your situation, and — to be straightforward — I suppose it must have something to do with sex. However, you are both able to acknowledge that something has changed, and you are absolutely correct when you say “it is no one’s fault,” because it isn’t!
So … The first thing that needs to happen here is that you both need to stop apologizing to each other for something you didn’t do. You clearly retain 97.5% of a long and very satisfying relationship, and it may take time to adapt a little to a change in one small piece of that relationship. I think it would be a great idea if you went out dancing with your husband and — during the slowest of available waltzes — you whispered in his ear, “It’s not your fault; it’s not my fault; it’s not anyone’s fault; and I still love you so much it hurts every single day.” It’s not that you “need to do better.” It’s that you both need to accept what has changed and be able to laugh about it together.
If you have had such a long and happy relationship, there have surely been other small bumps in the road that you have been able to climb together. This is just another such bump. So climb this one together too. I have every confidence that you can. Whatever it is that you used to do together that is no longer any fun for you, you’ll just need to find something else to do together instead. Be imaginative! This is an opportunity.
Of course it is a sex problem, and I appreciate your advice. But how little you know us. We can out dance the fastest and best we know. Walzing is for the old. You don’t know us at all. When my husband was presented with an award for practising law for 50 year by the local Bar Association, he was also praised as the best dancer regardless of age.You are seeing us as elderly. That we will never be. Don’t box us in because of chronology. I easily pass for 55 and my husband is ageless.. I agree we need to stop apologizing. But I miss the wonderful sexual closeness we have shared, We can still have the closeness and a partial sexual experience. I am just afraid I will let him down and he is afraid he will let me down. Bottom line we love each other and want to help one another. Walzing is a pitiful answer. Please don’t put us is the elderly box, because we a’int there. Get real. I do not wish to be impolite, just the facts.
Ann
I just realize what a waste of time I have spent asking you anything. I think you honestly want to be of help and are trying to help. But you haven’t a clue about people. You have book learning and try to help, but you have no understanding of the essense of the human mind and put people in little boxes like the old song.. We are not little boxex because of age. We are vibraint human beings with much life before us and a deep love for each other, so we will get through. whatever is needed. I thought you might have something prtactical or medical advise. Walzing is a poor excuse for any answer.. Badly done, Emma, Badly done. You can do better, but not for us.
Ann
*****
Amy responded as follows:
Dear Ann:
Your are quite right. I don’t “know you.” How could I possibly do that on the basis of your brief prior question? And you are more than welcome to ignore any suggestion I make … However, you still haven’t told me what the real problem is. I am not a doctor. I cannot give you medical advice — even if there is any to be given. And I can’t give you practical advice without knowing what the problem is.
I do need to let you know that you are imputing to me things that never crossed my mind and that I certainly did not say or imply. Some people happen to think that the waltz is one of the most sexually charged dances that the human mind has dreamed up to date. Perhaps you should try one … slowly. It has nothing to do with age, and everything to do with what is going on in one’s mind.
Oh … and if you “don’t want to be impolite,” it is somewhat amusing to find that you promptly left the message above after the first one … because it really is a little on the impolite side. I am sorry that you found my prior response to be trite. People who know me would certainly not consider me to be anywhere close to Emma-like.
I have been impolite and I sincerely apologize. I asked for your help and then responded discourteously. I have no clear idea of the real problem. I do thank you for your time and patience.
Amy replied:
Thank you Ann. I appreciate it. I am sorry that I am not able to offer you any better help, but I would suggest that if you and your husband aren’t, in fact, clear about the “real” problem that is obviously distressing to you both, you could do worse that consider a couple of visits (together) to a psychotherapist who specializes in sexual counseling.
My problem is anger. I have never been confrontational, and I don’t like anger. When my husband had his prostate surgery, I was not informed until the week before. I didn’t even know he had a problem, much less cancer. Yes it was his decision and I would have agreed.
We have always been a private couple and also private individuals. If I had breast cancer, I would tell no one. So I shouldn’t complain because I was not included in the decision.
I want him and need him, but I wasn’t told the after-effects. Of course when cancer is involved, I totally supported the surgery. We both try to resume the wonderful sex life we shared before surgery, but it is like work. We are both frustated and keep apologizing to each other. But my problem is fear of letting him down, which he says I never do. His fear is letting me down which does occur. We are also in the sandwich generation as I have a 99-year-old mother who has no memory, for whom I am POA. And our youngest son, married with two sons, has lost his job and we foot most of his bills. I want everyone to be well and properous and be far away from us. I am drowning in regret and feeling very selfish and I am a winter depressive. But spring is here, the trees are budding and my mood is climbing. Yes. I have been treated for depression, but nothing worked. I rely on my Bowflex treadclimer,. Exercise is always better than pills. I’m not sure I have made much sense. I have probably spelled surgery wrong. Thanks for being a listerner.
Amy replied:
Ah! Now things are starting to make a lot more sense!
Anger is a strange animal. We — as women of our generation and (probably) a certain type of background — were largely taught that it was inappropriate for us to express it. We were meant to be charming and understanding and supportive and helpful and …, and …, and …. But of course we are, and we are utterly entitled to be, “angry” about all sorts of things. The hard thing is learning how to fit our anger into our lives in a “reasonable” manner.
So … Item 1 … You are not entitled to “complain” to your husband because he didn’t include you in his decision process. It’s how you have both agreed to operate in running your lives. You are, however, entitled to tell him that you are furious about the fact that you didn’t understand the potential consequences of his decisions. But then you need to acknowledge that it is very likely that he didn’t either! Unfortunately, most men really don’t “hear” the risks that they are taking when they decide on certain types of treatment for prostate cancer — always assuming that the doctor even explained them well and clearly.
Item 2 … You are entitled to be angry that large chunks of your life are still having to be dedicated to the needs of other members of your family at a time when you might reasonably have been able to expect that you could have shed those responsibilities. The fact that they may not be “to blame” for the situation doesn’t mean you can’t feel angry about it.
Item 3 … You really do need to find a way to separate your anger about what has and is happening from what you are willing to do to move forward … And I am going to distinguish carefully between “what you need to do to move forward” and what you need to do to “recover the wonderful sex life you shared before surgery.” You clearly understand that that latter may not be 100% possible. So the question becomes “What is possible … and fun … and will give us both joy?”
One of the problems about being a “private person” is that sometimes one needs to share one’s deepest fears and emotions with someone … and it may not always be possible to do that with one’s “mate.” Indeed, something one’s “mate” did or didn’t do may be a critical part of the problem … which is clearly the case here.
Ann, I don’t have “an answer” for you. I have no magic recommendation as to how to deal with what you are dealing with. You are showing all the symptoms of “loss and bereavement.” And why wouldn’t you be? What has happened to you is just as if you had come home one day to find that your home had been broken into. The sense that one’s private world has been violated is very traumatic for women. It seems to be less of an issue for most men. But your husband appears to have recognized that what he did has violated your rights in a very fundamental way — which is part of why you both keep apologizing to each other and thinking you are letting each other down. Objectively, I can tell you that you aren’t. It is apparent to me that you each did what you always do … made you own decisions for yourselves and supported the decisions of the other … but this time there has been a real “death” involved. And you are both going to need to grieve some about that as opposed to apologizing.
Spring, and sunshine, and crocuses, and leaf buds will all help … but it’s okay to let some of the anger out too … You are entitled.
Thank you for your advice. It makes good sense. My husband and I have been best friends as well as lovers for 52 year this June. We still can talk for hours and we laugh a lot. I am grateful for a loving, laughing marriage, which is rare. So I should count my blessings and move on.
Thanks again.
Just sharing. My husband is still a practicing lawyer who works 50 hours a week. He runs every other day for 3 miles, usually with our daughter who threatens to get behind him with switch if he doesn’t run faster. He ran alone yesterday in a rainstorm. Limbs were blowing and I was concerned. I had towels by the door. He came in soaked and I said he had to get out of his wet clothes. I helped him out of his clothes in the kitchen to put them in the wash. He said I didn’t care about his wet clothes, I only wanted to see his beautiful body. This is us. Life is good. Thanks again.
*****
Amy replied:
See … All in the mind. (Well, nearly …)
:O)
I was recently diagnosed. Since then I’ve noticed that many wives are actively searching for prostate information on this site and others. My wife doesn’t have any interest in research. She thinks I’m “arrogant” for asking questions and seeking second opinions. Is this a common attitude (i.e., for a partner to “stay out of it”)?
Amy said:
Dear Anon:
We all deal with our health care issues in different ways, and I really don’t think there are “rights” or “wrongs.” What there are are “coping” behaviors.
Obviously, I have no idea how your spouse feels about your diagnosis. It may be frightening to her … but she may still appear quite blase and acceptant of it as simply being “part of life.” Her personal religious beliefs may also be important in all of this. And there are still many women (and men) who were brought up to believe that “Doctor” (with a capital D) was an authority figure who wasn’t to be questioned.
The women who you see asking questions on sites like this (and elsewhere) are the ones who feel that it is important and acceptable to do research and help their husbands and fathers. There must equally be tens of thousands of women who don’t act in this way — for one reason or another. It is much harder to know how many women there are who are not participating than it is to count the one’s who are.
My guess would be that the younger the woman the more likely it is that they will feel able and willing to take on some of this research, but that just reflects familiarity with the use of the Internet and a greater feeling of personal entitlement than may be the case for women of an earlier generation. Your wife’s personal viewpoint undoubtedly has aspects that are unique to her, and clearly you know how to do your own studying, so I wouldn’t let this worry you too much.
Dear Amy:
I have spent the whole work day researching the effects of prostate cancer treatment on erectile functioning. I am seeking hard numbers and facts. My new male friend recently informed me that he is a prostate cancer survivor. I have not asked many questions but I am a little fearful that he may struggle with sexual intimacy. I really don’t want him to feel that this is important to me, but it is. He is a healthy male, 43 years old and 8 years post-treatment. Is there any insight you can give me about what to expect from him sexually. Please let me add, I think he is perfect in every area so far, a strong sex life would just add to the wonderful relationship we’ve started.
Thank you for any help you can give,
Debra
*****
Amy responded:
Dear Debra:
First … I don’t know why you “don’t want him to feel that [sexual intimacy] is important to me.” You’re still a young woman. He’s still a young man. Why wouldn’t it be important to both of you? Perhaps a better question to be asking is, “How do we both get past this to learn from each other what is possible and what is important?”
Now please understand that I am not suggesting that you seduce him only to discover that everything is either wonderful or a disaster from a physical point of view. I do think, however, that sooner or later this has to be talked about. He has told you he is a prostate cancer survivor. If he is 8 years post-treatment, it is probably reasonable to assume that he has recovered well from an oncologic point of view, but his sexual function could certainly be impaired in some way. I think he has opened the door for you to explore. I think he wants you to ask, because he doesn’t want to go further than you are ready to go. So I think you should do the asking. All you have to do is tilt you head to one side a little and say, quietly, “Why did you tell me you are a prostate cancer survivor? Is there something else you are trying to tell me?”
Second … There are no meaningful “hard numbers” that apply to individuals with prostate cancer regarding erectile function. Everything depends on the way treatment had to be applied to the specific patient. If he had nerve-sparing surgery, he might have a perfectly adequate erectile function … but he may be concerned about its adequacy because it may not be quite what he was capable of at 18 years of age. (Surprise!). On the other hand, if he had to have both sets of cavernous nerves resected, then erectile function is going to be a problem (unless he has already had a prosthetic penile implant).
It seems to me that he knows whatever it is he feels he needs to tell you. You just need to give him the opportunity. After that, you can both decide together what (if anything) you want to do about it … but first of all the door has to be opened. And you need to be as honest with him about your sexual intimacy needs as I think he may be trying to be with you about his.
Thanks for the question. I hope the answer helps.
Amy
Good morning Amy.
I really appreciate your answer. Its refreshing to hear a voice other than my friends on this topic. Sometimes a lack of knowledge will keep you from moving in a positive direction. Your answer has definitely helped me decide to discuss this topic in more depth with him, and exploring for the answers might even be fun. I’m glad your website was here when I needed it.
Have a wonderful day,
Debra
One man’s story (my story) after prostate cancer surgery. I am a single man of 66 at this present time. Four years ago I had a robot-assisted laparoscopic prostatectomy and to this day I still have a non-detectable PSA. My story is an unusual one due to the way it has affected me sexually. I have questions of course, but mainly I need to discuss this with a woman in “Cyberspace” as I am not able to discuss my issues and concerns with a woman face to face, as she most likely would think I am a “weirdo.”
I will continue my whole story after I receive a reply from Amy, just to see if she is actually here to listen and give advice, maybe.
Chris
Amy said
Hello Chris. I’m listening.
Hi Amy,
My dad had seeds implanted in his prostate 2 weeks ago. He was told not to let my kids sit on his lap for 2 months.
A few days ago we went shopping and I totally forgot about him not being able to hold my 9-month-old son, and he did a few times and pushed him in the cart for about 1.5 hours! I am so stressed out that something could happen to my son!
Also my father comes over a lot to visit and lays on the floor and plays with the kids, how dangerous is this!
I asked my dad and he told me its fine, but they obviously say not for 2 months for a reason!!
Please get back to me ASAP!!
I’m so worried!!
Thanks,
Crystal
*****
Amy responded:
Dear Crystal:
The important thing — and this is important — is that your Dad literally should not let your kids sit on his knee or his lap over the next couple of months.
The radiation from the radioactive seeds only travels very, very short distances. It is OK for your Dad to be around the kids and to play with them. What he should not be doing is spending significant time with them very close to his pelvic area, e.g., sitting in his lap. So … There is no problem with him holding your son up around his shoulders for a while or pushing him in the cart or playing with the kids on the floor. He just needs to not spend time with them sitting on his knees or his lap.
In addition … You need to understand that there is no evidence (that I am aware of) of any major risk even if the kids did sit it his lap for a while. The reason that these instructions are given to patients is as a precaution, not because anyone has ever seen a real problem. It is simply wise for young children not to be exposed to any more than normal background radiation.
I really don’t think anything serious has happened here, but you do need to be firm with your Dad about not letting the kids sit on his lap. OK?
Amy
Thanks so much Amy!! You have made me feel so much better!! I was so scared something bad was going to happen to my son!!
My dad told me they can not sit on his lap and he has not allowed them to! He crawls around on the floor with them and like I said held my son for a period of time in the grocery store and pushed the cart which i figured was bad since his pelvis was level with my son!!
Its so hard because he is so close with my kids, and I feel horrible to tell him to stay away from them, since he is used to seeing them every day!! But I just need to make sure my kids are safe!! I have never been though this before!!!
Thanks for easing my mind !!
Much appreciated,
Crystal
Dear Amy,
I certainly enjoy reading your website, everyones’s comment and your advise. I am much interested in one a lady named Debra, her letter was March 30, 2011, regarding her male friend who was a cancer survivor. Can we kindly ask Debra what kind of procedure her friend did, that made him a cancer survivor? I have female friends whose husbands are sufering from prostate cancer. I would like to help them. They don’t know how to use computers and the Internet. Thank you so much.
Wish you a blessed day. More power to you.
Libay
*****
Amy replied as follows:
Dear Libay:
One of my simple rules is that I let people contact me when they want to and I never contact them unless they ask a question. Maybe Debra will see your question and volunteer some information. My guess would be that her friend had had surgery if he was treated 8 years ago, but I really have no idea, and at the time she asked her question, I don’t think Debra did either.
Amy
Dear Amy,
Thank you for your prompt reply. I hope Debra will read my question. I want to ask you though, if you may, a brief story, of what happened to your husband like: What procedure did he take? Did the procedure help him a lot, prolong his life? Did the procedure affected his quality of life?
My friends were happy to know that I am getting some info for them.
I thank you again. More power to you.
Libay
*****
Amy replied:
Dear Libay:
It is very important for you and your friends to understand that the most appropriate form of treatment for a man with prostate cancer depends on many, many factors, among these are the following:
– The patient’s age, his life expectancy, and the general state of his health
– The patient’s PSA level immediately prior to diagnosis
– The patient’s clinical stage at diagnosis
– The patient’s Gleason score (based on his biopsy results) at diagnosis
– The amount of cancer that seems to be in his prostate (which can also be estimated based on biopsy and related data)
– The results of other tests (such as bone scans and CT scans) that may be needed to assess whether there is cancer that has extended outside his prostate
The various forms of management for localized prostate cancer include active surveillance (which is highly appropriate and recommended for many older men with low-risk disease), different ways to have surgery, different types of external beam radiation therapy, two types of “brachytherapy” (internal radiation of the prostate), and several others. However, the type of treatment that may be appropriate for one man may not seem appropriate for another, and it is very important for the patient to “do his homework” and determine which type of treatment is right for him and his family. Every form of treatment for prostate cancer can have significant effects on the quality of life of at least some patients. But the greater the skill, focus, and experience of the treating physician, the greater is the possibility that treatment will succeed and that it will come with lower risk for complications.
Above all, the most important consideration for any newly diagnosed patient with prostate cancer is the skill, experience, and focus of the treating physician and his or her colleagues. Treating prostate cancer well requires great skill and a true focus on the needs of the patient.
You will find many pages of information about the diagnosis and management of prostate cancer elsewhere on this site. It is also important for you to understand that how other individual patients were treated is not necessarily the right way for the next patient. Even for three men with exactly the same clinical characteristics, one may choose robot-assisted surgery, the second may choose brachytherapy, and the third may receive external beam radiation therapy or proton beam radiation, but done well each of these techniques may offer these three men a high quality outcome. We simply do not know what “the best” way is to treat localized prostate cancer. How my husband was treated or how Debra’s friend was treated is not important by comparison with what each individual patient does to make sure that he, personally understands the risks and benefits of the treatments he is considering for his own therapy.
Hi Amy.
I have been diagnosed with prostate cancer. I am 42, love my wife deeply, and have three young children (7.5 years, 6 years, and 18 months). We live on the West Coast (LA) but I work in the DC area, which means I’m on a flight every Monday morning and back to LA every Friday evening.
Are there any circumstances under which I shouldn’t or wouldn’t tell my wife and eventually my kids about my diagnosis.
I was considering not telling her and just dealing with it by myself. I feel that this would be the best scenario for her and the kids and would allow me to focus on treatment and hopefully recovery.
Am I thinking straight?
thanks,
dc
*****
Amy’s reply follows:
Dear DC:
I understand that you think that by not saying anything to your wife you believe you may be saving her from worry and other potential consequences … but I would gently suggest that if the situation was reversed, and she had been diagnosed with (say) cervical cancer, you would be mortified to find out that she hadn’t told you in order not to worry you.
First, a very great deal about your prognosis and treatment depends on the extact nature of your diagnosis (the clinical stage, the Gleason score, your PSA level, and the amount of cancer in your prostate). Second, how you get treated (which may depend on the details of your diagnosis) is potentially going to have some significant consequences that just aren’t “hideable.”
At this stage there is certainly no need for your children to know about this, but your wife — at least in my view — very definitely does. You are going to need her help and support. And she has every right to know what is going on.
You are relatively young. If you have early stage, relatively low-risk disease, you have a good chance of curative therapy and a good subsequent recovery, but this is not something you can successfully hide for very long, and if you love your wife deeply and she loves you the same way, why would you want to? … “For better for worse, for richer for poorer, in sickness and in health” … Remember?
Oh … and one other thing … Sooner or later you will need to tell your male kids about this because they are at potential future risk through family history. You may not need to do this until they are in their later teens, but you and your wife may want to think about making sure that the kids are brought up on a very “heart healthy” diet in order to minimize the small risk that dietary factors (e.g., too much fat in the diet) can be a possible cause of prostate cancer.
Amy
I have prostate cancer, and I am going to purchase the one that has really become popular with women. There must be a make and style that ladies prefer?
Thanks, Tony.
—–
Amy responded as follows:
Dear Tony:
Probably I am just being my usual relatively naive self … but … I have absolutely no idea what you are talking about! Perhaps you need to be more specific.
Amy
Amy:
My husband is extremely fit and healthy. We are newly married and he had treatment brachytherapy and targeted radiation shortly after our marriage. Now he has totally lost interest in sex; I knew it was possible but I really don’t understand why there is no physical intimacy at all except brotherly pecks and hugs. I am devastated — not about the lack of intercourse but by the lack of any physical intimacy whatsoever; no lying together in bed; nothing. I am crying as I write this because I love him so much; he is hurt enough about this than to burden him with my feelings but I really am afraid that this is what our life will be. I can live without intercourse or even oral sex but no physical intimacy is scaring me because our relationship is so new. Am I being selfish; am I just awful for even feeling this way?
*****
Amy replied as follows:
Dear “Atticus”:
While your husband may have been profoundly affected physically and psychologically by the effects of his brachytherapy, you both made a commitment to each other that came with your marriage vows … “To have and to hold, for richer, for poorer, in sickness and in health …”
Getting beyond where he and you are today is going to take some hard work, and that hard work is going to have to begin with some real honesty. He needs to talk to you — and perhaps to a health care professional too — about the emotional and psychological distress that has resulted from his treatment. He undoubtedly feels emasculated in any number of ways, and men commonly have no idea at all how to cope with those feelings. You need to be able to talk to him about the emotional and psychological distress that his disinterest in intimacy is causing you. You are absolutely not being “selfish” or “awful” for feeling the way you do. This is about both of you.
Did your husband have (or is he still having) hormone therapy in association with his radiation? What you describe sounds very much as though he might have done.
The situation is undoubtedly not being helped by the fact that both of your short-term, personal sets of expectations — “bedroom-wise,” so to speak — have been turned completely upside down. And something needs to happen about that too. You both need to start all over again with what you want intimacy to mean for you, and then decide what you are willing to do to accomplish that. This most certainly may place a requirement on you to take on a more demanding and commanding role in that part of your relationship. It is even possible that your husband would welcome that, because one of the things that goes on in these situations is that the male’s sense that he is some sort of “failure” colors everything about his view of intimacy.
Here’s one thing that you can most certainly do. Buy yourself a copy of Dr. John Mulhall’s Saving Your Sex Life: A Guide for Men with Prostate Cancer. You can get it from Amazon. As a couple, you may or may not be interested in trying all of the things that are referred to in that book. It is often blunt and straightforward. However, it will give you a sense of what is possible, and above all it will give you a starting point to discuss the problem. Once you have read it yourself, you can wrap it nicely and give it to your husband and tell him that you and he are forming a study group, ‘cos it’s time to talk about your sex life for the next 20 years. Then (perhaps) you can take him into the bedroom (with the book) and make it clear to him that this study group will work better when both students are naked. He very definitely needs his ego boosted. You may also need to tell him in words of one syllable (so to speak) what you need. This is not something a lot of women are well trained in. Many of us spent our sexually formative years being trained in how to say “No” as opposed to how to say, “Yes, just like that, and now please.”
Finally, you need to know that as a couple you are two steps ahead of where a lot of couples find themselves. At least your husband does understand that he needs to give you hugs and brotherly pecks. It’s a start, but for some couples the male is so traumatized by his loss of libido and sexual function that he doesn’t even recognize that need!
Time for you both to stop feeling sorry for yourselves individually and take charge of the situation!
:O)
Amy
Ms. Amy,
Would you interested in another web site on prostate cancer? It is at http://www.ProstateCareToday.com. We have put together some info on prostate cancer, especially for September, which is Prostate Cancer Awareness Month. Thank you for your time and hope you like it. And maybe share it with your readers if you think it is worthwhile.
Be well.
Andre
*****
Amy replied as follows:
Dear Andre:
Thank you for letting me know about your web site. I don’t make the decisions about which sites we link to from The “New” Prostate Cancer InfoLink, but I have passed the relevant information on to the people at Prostate Cancer International who do make these decisions.
With kind regards.
Amy
Amy,
A client of mine recommended a book to read by Sheldon Marks, MD — Prostate & Cancer: A Family Guide to Diagnosis, Treatment & Survival. From what I could understand, the seeds used for brachytherapy would be radioactive for a period of time, but it did not say how long. It was recommended as you did, that the man who underwent the seed implant not hold young children on his lap for 2 months after the seed implant, or be next to them or to pregnant women for an extended period of time. The book states that the seeds come out in the urine or semen, so I assume that is why the recomendation for a condom for a few months after resuming sexual contact. What I would like to know is how long are the seeds radioactive? Are they radioactive up to a year? Or beyond?
Sincerely,
Terri
*****
Amy replied as follows:
Dear Terri:
The precise length of time that the radioactive seeds implanted in the prostate go on emitting radiation depends on exactly which radio-isotope is being used (iodine, cesium, others). It is, however, relatively short — of the order of 2 to 3 months. You and your [father? husband?] need to discuss that specifically with his brachytherapist or the brachytherapy nurse. You are correct that the fact that seeds can be dislodged from the prostate and expelled in the semen or urine is why a condiom is recommended for a period of time.
Having said that, the actual distance over which this type of radiocativity is effective is extremely short … more like millimeters than inches. The direction that patients should avoid very close contact with young children or pregnant women for extended periods of time is a precaution rather than an imperative. It’s more like telling one’s kids that jumping off walls 8 feet high onto concrete paving is likely to lead to the occasional broken leg. Most young children don’t actually risk jumping off walls 8 feet high onto concrete in the first place! As far as I am aware, there are no actual, reported cases of problems in any children or pregnant women as a consequence of being exposed to men carrying seeds after brachytherapy.
I am on hormone therapy, and I want to add Avodart or Proscar. I can not find a doctor in Austin, TX, that will let me add this to my Casodex and Lupron treatment. My PSA rebounds to 12 in the 6-months “off” periods.
Amy replied as follows:
Dear Frank:
I don’t know any specific doctors in the Austin area who might be willing to write such prescriptions for you either. My suggestion would be that you contact leaders of local support groups of organizations such as Us TOO or Man to Man and ask whether any of their members can give you assistance.
Another possibility would be to contact advocates for this type of treatment such as Chuck Maack and see if they are able to offer you any ideas.
Hope this helps.
Amy
My name is Dennis and I recently had my prostate removed. My prognosis is good since no cancer was found in my lymph nodes or other parts of my body. My question is more about putting together the best regimen for my post-cancer life. I am 64 but plan on living a long time. Can you recommend any programs, readings, or other that would help put up the best possible battle plan for my post-cancer life.
*****
Amy says:
Dear Dennis:
There are 1,001 opinions on how to optimize one’s life expectancy and the quality of one’s life after initial treatment for prostate cancer, but few of these opinions have been validated by the sort of research that gives really, really clear direction. A good, “heart healthy” (Mediterranean type) diet and regular exercise are among the most important things to focus on because they are good for your heart and for your prostate … and men are at much greater risk for cardiovascular problems that they are from their prostate problems.
One of the few real “experts” in this area is Dr. Mark Moyad at the University of Michigan. Here’s a link to a video you might want to have a look at. Dr. Moyad has also written a number of books about prostate cancer and lifestyle. One of his most popular is Promoting Wellness for Prostate Cancer Patients, which is now in its 3rd edition.
Hope that helps.
Amy,
My husband is having a robot-assisted prostatectomy in one week, I know that he is struggling with this emotionally, as is expected. We have had many discussions about how this will affect him both physically and emotionally, and also the effects on our sex life.
Suddenly, 2 days ago, he has become very irritable (not surprisingly), but tonight he told me he wants to drive himself to the hospital for the surgery so that he can drive himself home. He doesn’t want me to be there before the surgery or when he is in recovery because he doesn’t know what his emotional state will be.
I know that I should only be thinking about what is good for him emotionally and not dwelling on my own feelings, but I am deeply hurt after 33 years of marriage to be pushed away like this. I feel like he is putting a wall up between us when I have told him I want to be there for him through all of this and this is a time when we should be closer than ever. He is a very masculine and strong man who has always seen himself as a strong protector and provider for his family, which he truly has been. Do you have any advice or guidance?
*****
Amy replied as follows:
Dear CK:
First and foremost, someone at his doctor’s office needs to tell him that he is not to even think about driving a car (or a truck either) within a few hours of having his surgery! He is going to be wearing a catheter and a urine bag. He will be disracted by how he feels after the surgery. He may feel extremely uncomfortable post-surgery. His reaction times will be slowed after his anesthesia … and the idea that he would drive himself home is not even close to smart! People aren’t allowed to drive home after they have something a simple as a colonoscopy!
Second, you need to tell him that if he wants to drive himself to the hospital withoout you, that’s just fine, but you will be driving yourself to the hospital too (or getting a friend to drive you there) because you have every intention of being right outside while he is having his operation and he’s just going to need to deal with it.
All of this is just one more example of his need to be “a big, strong guy” in the face of his considerable fear. You need to make it very clear to him that your being there during and after his surgery is not “up for discussion.” If you were having breast cancer surgery, he would expect to be driving you to the hospital, to be right there while it was happening, to be right there while you recovered, and to drive you home again afterwards. His emotional state before and after the procedure is not an issue. What is an issue is that in this particular case he is not writing the rules!
Of course you do need to tell him all this with a big grin on your face. Also, is there another example you can remember from 33 years of marriage when he pulled something like this and then had to “eat humble pie” afterwards when it didn’t work out? It might help to remind him (while wearing the same big smile)!
Amy
Amy,
Thank you for your advice. What you said is exactly in line with how I was thinking. I thought of the same scenario as to how he would feel if I told him I didn’t want him around while I was having breast cancer surgery! I even told him if he does drive himself to the hospital I will be driving there myself anyway because I fully intend to be in the waiting room while he is having his surgery and for post-op as well. He will stay in the hospital for several nights, so he knows he will not be under the effects of anesthesia, but yes, he also knows he will have a catheter and bag. Now that I know I am thinking on the right terms, we will talk. Thank you for the encouragement!
Amy:
My father is 73 years old and was diagnosed with advanced prostate cancer (PSA = 125, with mets to the pelvis and spine) back in January 2009. Later, in September 2010, mets were also found in the dura mater.
At present he’s being treated with Taxotere. He has had five sessions (the last was 2 weeks ago) and his PSA is slowly decreasing (from 300 to 198 ng/ml). My main concern is quality of life. I don’t want him to suffer from pain. It breaks my heart to see him in pain. He takes Panadol and Endone for pain relief. It helps him but I’m afraid these will no longer work. He also suffers from pain in the jaw area, around his mouth. The radiologist said it could be Padget’s disease. Is there any treatment for this? Any advice on how he can gain some weight?
*****
Amy replied as follows:
Dear Jose:
Where do you live? Can you get “hospice at home” care for your father? There are other forms of pain medication that might be able to help that are stronger than paracetamol (Panadol) and oxycodone (Endone), but you and your Dad need to have a serious conversation with the oncologist about what you are all trying to do here.
If your father already has mets in his dura mater, it is my (very non-medical) understanding that there is no drug currently available that is going to do very much for very long to delay the progression of his cancer, and many of the drugs that are likely to get tried are more likely to affect your Dad’s quality of life than to extend it.
It seems to me that what is important here is for everyone to get focused 100% on managing the quality of whatever remaining life your father has, starting with thoroughly effective pain management. If that means something like morphine to palliate the pain, now is really not the time to be worrying that he might get addicted to a drug like this.
I am sorry I can’t offer anything more creative, but there comes a time when we all have to accept that modern medicine is not going to be able to offer life extension, at which point the important thing is to focus on quality.
Amy
Dear Amy,
My husband (we’ve been married 30 years) was diagnosed with possible prostate cancer (there was a ridge that was discovered on the prostate, and elevated levels of PSA — SO — the doctors (he got two opinions) recommended various treatments (radiation or surgery) and my husband chose a prostatectomy. I did some research and I begged, begged him to consider the robotic nerve sparing technique. But he liked the doctor he had been talking to, and this doctor was fairly close to our home, so my husband decided to put his trust in him. The day of the surgery came and after four harrowing hours of waiting, the surgeon came out and spoke to me, in front of a waiting room full of people, that all had gone well, and, he said this with a pleasant expression, and a smile on his face, he said “… and I did take the nerves on both sides. …”
I wasn’t able to process this statement at that point, having been 24 hours without sleep, and beside myself with anxiety, and feeling massively uncomfortable with the entire waiting room riveted on our every word. I only wanted to get to my husband, to be allowed back into the recovery room where he was … only later did it sink in. I accepted it of course, but when the prostate biopsy came back, the findings were that the cancer was very small and completely encapsulated within the prostate. The surgeon did not have to remove the nerves. He castrated my husband and destroyed any chance that we could recover our wonderful sex life, a sexual relationship that had been extraordinary for 30 years. And it had felt like some kind of a death to me, of course, not like what it would have been had my husband not survived the whole ordeal — but something has definitely been killed between us.
Now I am left with a terrible, deep-seated anger that I have to completely hide — that my husband would not even consider the robotic prostatectomy (as though I had no stake in the matter, that I shouldn’t interfere) which would have spared the nerves for certain and at least given us some hope of continuing what was a cornerstone of our marriage. … But now that’s over. And I have no idea what to do with this incredible anger I feel, also, so much toward the doctor, who was so sure of what he was doing and was so wrong — the hubris couched in that waiting room smile will stay with me the rest of my life — and toward my husband, who of course I am so worried about and feel so much sadness for (which I must hide of course as well) as I know this whole thing has devastated him, which he is hiding as well. We go on as if nothing has happened, but I am dying inside and I’m very afraid he is too. He has become petty and critical. I have begun to feel physically ill in a profound way, and I know there’s a connection to my horrible emotional state. I don’t sleep, can’t seem to digest food without pain now, I’m exhausted all the time and all of it is making me just sick. I weep as I write this.
Help me, Amy. Or anyone reading this. Anything.
Rachael
Amy replied as follows:
Dear Rachel:
So I have been thinking about this all day … and first and foremost let me very, VERY clear that your anger and your frustration and your tears are completely understandable. And now so is your husband’s sense of devastation. However, there are two very different things going on here that need to be dealt with as and when you feel able to do so.
The first is how do you and your husband are going to move forward. You need a way to be able to talk to each other about this. It is not about whether you made a right recommendation and he made the wrong decision. We will never know if that was true. But what we do know (assuming that what you are saying about the small, organ-confined cancer is true) is that that you husband seems to have had a self-absorbed jackass for a surgeon. You can’t both let that man’s actions rule the next 20 years of your lives. You just can’t! You need to be able to sit down with your husband and both “let go” of all these emotions that are boiling within you. Now you may need some help to do that, i.e., a psychotherapist or similar, or you may be able to do it on your own, but you absolutely do need to do it. Until you have done that, you are not going to be able to even think about addressing the whole sex-life issue … and there are things that can be done about that too.
You are both hurting too much to make any good rationale decisions about anything at the moment. You are both “missing your best friends” because you can’t talk to each other about what has happened … and you have to. Who else is going to understand better how you are feeling than your husband of 30 years? Who else better understands how he is feeling that you. He probably is feeling stupid and miserable and wants to cry as much as you do … but of course he can’t because you are both building separate walls around what has happened and is happening. You really need to stop building those walls and “let the light back in.”
The second is what you and your husband want to say to (or do about) that surgeon. There are a lot of things you can do and they range from writing him an absolutely stinking letter about your view of him as a physician on upwards. Obviously I have no idea about what he told your husband before his surgery (which is an important issue in all of this). However, again, assuming that what you are saying about the small, organ-confined cancer is true, his treatment of your husband would appear to have been unnecessary at best and unethical and incompetent at worst. It doesn’t have anything to do with whether your husband had open or robot-assisted surgery, however. Nerve sparing, when appropriate, can be practiced with great skill using either technique. The question is simply whether this surgeon knew what he was doing at all. I get the strong impression that he didn’t. Unfortunately he would not be the only surgeon practicing in America today who shouldn’t be let into an operating room … but that’s a whole different matter.
Amy
Dear Amy,
I was cringing as I began to read your letter, I was literally afraid to read it, because I totally expected you to come down hard on me for all these selfish things I’ve been feeling. I fully realize how selfish they are. So I was expecting that. I’m so relieved that I can read your response and not feel taken to task, as I already take myself quite to task under everything else. I truly have no one to talk to about this, so please understand how much I genuinely appreciate that you were so kind to me. Thank you, so, so much. I really cried when I read your response, everything’s been pent up for so long. I keep crying but I do feel better, just having someone to talk to about this who isn’t judgmental means so much.
Because I do realize that what I’m going through is a pale silhouette compared to what my poor husband is going through. He was an incredibly handsome, accomplished, virile man (and is still incredibly handsome and accomplished), and sex was always very special for him, and with him. It was a major part of his self-image, as I am sure it is for most men. Right before the surgery we talked about the possibility that the outcome would be the end of our sex life as we had known it, and at that time I told him truthfully and honestly that if that was what had to be, I felt that I could be fine with that, and that I felt completely lucky to have lived in the sunshine of his attention and to have been his partner in what was for me sacred sex for 30 wonderful years; I said too that we had probably had more wonderful sex at that point that the majority of people on this earth ever had in their entire lives, and that I was absolutely 100 percent for him no matter what. And that was, and remains, absolutely true.
We had witnessed his brother-in-law die a horrible death from prostate cancer about 10 years ago, an event which pretty much seared itself on our consciousness — and I think we were both really freaking out that the same fate might be looming over my husband. But we were freaking out only separately — when together, we were very strong and calm for each other.
So when my husband discovered this doctor through his urologist, and read recommendations about him online, and liked him a lot when he went for his first examinations, I think the knowledge of what happened to our brother-in-law propelled my husband headlong toward the quickest solution possible. But as I said, the thought that it didn’t have to be that way if he would have listened to me is the thing that torments me. The realization that he cut me out of the decision as to what he should do, what doctor he should chose and the unnecessary irrevocableness of the result has proven to be hard to live with.
It almost seems like it makes those 30 years of what I thought was perfect understanding and rapport between us a lie. I guess that’s the collision with reality I’m having that is shaking me up, that what I’ve believed about our marriage all these years was a lie, this perfect understanding. He ignored my every standpoint, with disaster as the result. This has rocked my reality and I can’t seem to get my bearings. I don’t know what to do. I feel so confused and lost. And lonely. I flat out cannot talk to him about it. I really could never forgive myself if I blurted these unutterable things like “Why didn’t you listen to me!” “Look what you’ve done!” which would be nothing but destructive, and after he’s been so hurt. I just couldn’t live with that, if I ever said anything to him like that. That would be unforgivable. That really would be the end.
I did compose a few different letters (so far) to the doctor, written in varying proportions of understanding and rage. I haven’t mailed any of them because ultimately what good will it do? Maybe it might make him ponder a little more the repercussions of his decisions in the OR, but realistically, if that guy isn’t aware of that at this point in his career I don’t know how anything I could say could enlighten him further. Having our experience published here, which might allow some other couple to think a bit more deeply about the ramifications of their decisions, to perhaps give the husband some inkling of the importance in the life of his wife of any decision he ultimately makes, and how right and fair it is to include her in those decisions, feels more constructive. But I reserve the right to write that letter when our future becomes a little clearer.
The sickness and anger I feel when I think about what has happened to us continues to debilitate me; to be so angry at the doctor is enough in itself to make me sick, but to be so deeply angry at a person (my husband) for whom I simultaneously feel equally deep sorrow and love is doing something really bad to me. I know I’ve got to come to grips with it, I’ve got to forgive my husband, the doctor and myself for my own good; I just don’t know how to do that at this point. How am I supposed to do that? At this point, my husband acts as though he doesn’t care about me at all. No affection, no nothing. I have to ask for a hug or a kiss. Sometimes he goes through an entire day without speaking to me. We sleep apart now. And I just go through the motions of the day and try not to think. I just stuff it down and down at every turn, with the only exception being these letters to you. Perhaps I do need to see a mental health professional of some type. I also realize ultimately there’s nothing to be done about it now. There’s nothing in the world that can be done. Maybe somehow we’ll get through this. Maybe we won’t, I don’t know.
Thank you for letting me talk about this. I really appreciate it. Thank you.
Rachael
Amy replied:
Dear Rachael:
But there really are things that you can do about this … starting today.
You need to begin at the beginning … and the beginning includes two things: (1) You need to tell your husband he is your best friend in the whole world, and you miss him, and it is hurting you. (2) You need to tell him that the depression about what has happened is killing you and you are going to get some professional help. Then you need to go get that professional help.
You need to take a first step out of the current cycle of regret and self blame and do something to change the dynamic.
Amy
Hi Amy.
I think my husband has prostate cancer but won’t tell me. All the signs are there. I know he has it but I don’t want to let him know I know. It’s killing me inside.
I have known for a while now. For up to 3 weeks he hasn’t wanted to have sex, and he turns me completely away. It is so cold in the bedroom. He just lies down and go to sleep or look at TV
Don’t get me wrong. I went through thinking it was another woman, but I don’t think so. I don’t know how to talk to him. All I do is cry and cry and cry some more.
Help … please.
—–
Amy responded as follows:
Dear Carolyn:
There are many possible reasons why your husband is behaving the way he is, and I don’t think we should be assuming it is prostate cancer. However, what we can assume is that there is something that is very much on his mind and that it needs to be talked about. Just as an example, maybe he has been told he is going to lose his job (or has already lost his job) and he has no idea how to tell you.
What is important here is that you need to find a way to talk to him about the problem … whatever it is. You both know there is one, and until you can talk about it, it is like an emotional monster that is hanging over everything. Your husband may be as upset about whatever is going on as you are.
I really don’t know what else to tell you except that you need to be able to talk about the problem with him. You know him. I don’t. Is there a way to make a joke out of the question? (“Have I turned into a pumpkin? We had a great sex life until two weeks ago?”) Can you just ask him directly? (“What’s going on? Have you lost interest in sex?”)
Somehow you have to be able to get the problem out on the table. It may be something completely unexpected.
Hope this helps.
Amy