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 would like to explain our situation and ask questions too.
My husband had prostate surgery and radiation in 2000. He has not been able to have a erection to this day. He has taken some of the erection pills without any help. He does not want to be intimate at all. He says, “What is the use?”
I keeping telling him that I can be satisfied just hugging and kissing some times. Is there any help for restoring the damaged veins that the blood flows through to the penis? I love him very much and I have tried to explain this to him. I have been very depressed about this. He will not go to counseling. I am thinking about going just for myself.
Thanks
Elizabeth
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Amy replied as follows:
Dear Elizabeth:
So many men and their wives suffer in the way you describe, and this is one of the saddest aspects of prostate cancer. The man is physically emasculated by his treatment, and the physical emasculation then becomes emotionally emasculating for him too. As a result, he withdraws from any and all sexually explicit or even emotionally comforting activities, leaving his wife or partner physically and emotionally destitute as well. We women have a hard time understanding why men behave in this way, because we have a greater tendency to understand the benefits of close contact and emotional reassurance. Our husbands, on the other hand, have been taught that their sexual prowess is fundamental to “who they are.” The loss of that capacity is therefore physically and emotionally traumatic for them — and the possibility that they could benefit from counseling is nearly as hard for many men to admit.
It seems to me that there are three possible things for you to do:
1. As you suggest, it might be a really good idea for you to get some help for yourself. Regardless of what this is doing to your husband, it is scarring you too, and you will benefit from some help to cope with this.
2. There are web sites and ListServ systems specifically for women where you can talk with others who are going through or have been through what you describe. Knowing you are not alone is a big benefit in itself. So you can have a look at any one (or all) of the following: the Wives and Partners Group on The “New” Prostate Cancer InfoLink Social Network; the website HisProstateCancer.com that has been developed specifically for wives and partners; and the ListServ forum “A Prostate Cancer Forum for Ladies Only.”
3. Perhaps most importantly, sometimes you need to ignore your husband’s emotional distress and address yours. It is OK to just say, “I need a hug” and “take one.” It is OK to say “Gimme a kiss,” and give him one. It is OK to just “snuggle up” in bed — even if he does seem to ignore you. Habits can change. Beliefs can be altered. Waiting for him to give you permission will be a longer process than simply deciding to “take what you can get.” He may seem a little uncomfortable with this, but if he is overtly “difficult” about it, it’s worth trying the approach where you just grin and say, “Just ‘cos you don’t need a hug, I do!”
I hope some of this helps. I am sure you and your husband are both having a very difficult time with this alteration in your circumstances. In overcoming this, it is going to be important for you to be clear with him physically about your needs. Sometimes talking about it just doesn’t work!
Amy
If prostate cancer cells are in the husband’s bloodstream or the semen, is the wife at risk “catching” the cancer?
Does the radioactive contrast medium taken for the diagnostic scans pose any risk for the wife?
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Amy responded:
Dear Dave: Thanks so much for you questions.
In the first place, women cannot “catch” prostate cancer in any shape or form — by sexual transmission or though accidental transfer of blood or serum or saliva. Prostate cancer is an exclusively male disease, and there is no normal biological mechanism that would allow prostate cancer cells to grow in a woman’s body.
With respect to the accidental transfer of radioactive contrast media, any amount that did get transmitted would be so small as to be negligible. The amount that is actually injected into the man when they have a bone scan is already very small and has a very short half-life.
I think you can feel very secure that any treatment or diagnostic agent that you (or another family member) may be getting is very highly unlikely to have any impact on a spouse or partner. Now having said that, there is one form of treatment that does have a risk of affecting others. Men who have permanent radioactive seeds implanted as one form of brachytherapy are encouraged to avoid close physical contact with children or people of child-producing age for about 3 months after initial implantation of these seeds. The reason for this is that the radiation from these seeds may affect the reproductive organs of children and younger people. So … it may be a good idea for grandpa to avoid letting his grandkids sit on his lap for a few months if he has had permanent seed brachytherapy.
I hope this helps some.
Amy
My husband was just recently diagnosed with prostate cancer, the early stage. He was implanted with the permanent seeds. The question I have is, will he ever be sexually active again?
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Amy’s answer appears below:
Dear E.:
Your concerns about sexual activity after treatment are very normal. Almost every man and his partner has such concerns — and being able to talk about these issues is a very important part of prostate cancer treatment.
Obviously, it isn’t possible for me to give you any guarantees about your husband in particular. His specific outcome after surgery is going to depend on a whole bunch of things, including his age, just how sexually active you were together before his treatment, and other factors. However, the good news is that relatively younger men who had good levels of sexual activity before seed implants tend to have good levels of sexual activity after implants too. You will need to be a little cautious for a while, as I am sure the doctor has told you, but after a while it is very probable that your husband will relatively rapidly regain his prior capabilities, and if the need arises he can “help things along” with as drug like Viagra or Levitra.
On the whole, and keeping your fingers well crossed for a little luck, you should be able to look forward to a return of normal sexual function after a while, and there is a very good book that lots of couples find helpful called “Saving Your Sex Life” by Dr. John Mulhall. It is specifically about sexual function and intimacy after prostate cancer treatment. You can find it on, for example, Amazon.com.
I had a radical prostatectomy and radiation 1 year after the radical operation. Two years later my PSA was 4 and I stated with hormone therapy. After 18 months I started watchful waiting for 2 years. Now I am with hormone therapy since 3 months ago. Question: Can I start watchful waiting after 6 months if my PSA does lower than 1 ng/ml? Right now my PSA is 0.2. Your answer will be appreciated.
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Amy says:
Dear Mr Guy:
I am sorry to hear that you have a progressive form of prostate cancer. You seem to have been following a so-called “intermittent hormone therapy” regimen since you started taking hormones nearly 4 years ago.
In general, it seems likely that you should be able to continue to follow such a regimen, with a period of no hormones (which you refer to as “watchful waiting”) between each period of being on hormone therapy — so long as your PSA level continues to drop significantly each time you go back onto the hormones.
So, in answer to your specific question, it seems likely that, yes, it should be reasonable for you to stop the hormones again in about another 3 months unless your doctors think otherwise for some reason that you haven’t told me. Obviously I am not a doctor and you do need to discuss this strategy carefully with your doctor so that you understand exactly what he is recommending and why.
Hi, Hi, Amy,
I wanted to express my appreciation for your insightful responses to men and women alike regarding prostate cancer and its treatment side effects. Intimacy issues are concerns for most of us who are prostate cancer patients or survivors and for our wives or other partners.
I discuss these matters in a couple of chapters of my book, Conquer Prostate Cancer: How Medicine, Faith, Love and Sex Can Renew Your Life, and also in its ongoing companion blog, conquerprostatecancer.com, which I hope you’ll add as another helpful resource.
I’ve also published an article and recently written a separate paper on how men’s ED after prostate cancer surgery and other treatments affect the women in their lives. The article and report offer various approaches for reinvigorating your sex lives together.
While the new report has not been published yet, I’ll be happy to forward a copy to anyone who sends me an email me via my blog (above).
–Rabbi Ed Weinsberg, Ed.D., D.D.
I personally know of the importance of women and their important role in prostate cancer. I am a urologist that has been treated. In fact, I have written a book on my experience and, without realizing I had done it, the majority of the personal stories highlight the beautiful role that my wife, like so many other women, played in my prostate cancer journey.
John McHugh, MD, Gainesville, GA
The Prostate Decision
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Amy says:
Dear Dr. McHugh:
I am sure you have forgotten way more about prostate cancer than I am ever likely to learn … but one of the things that I am also fairly sure about is that — for whatever reason — the average woman gets way more brownie points for empathy and “listening” that the average man. So please tell your colleagues in the urology community to listen just as carefully to the spouse’s questions as to the patient’s when explaining the situation to newly diagnosed couples!
Thanks for sharing.
Amy
Please send me a copy of how prostate surgery affects wives. I am a 61-year-old man that had an RP 15 months ago and am interested in having physical contact with my wife and I am on Eligard. Thank you.
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Amy responded as follows:
Dear John:
Thank you so much for your question. I am not sure exactly what you mean by “a copy of how prostate cancer affects wives,” but what I am sure of is that your understanding that a man’s prostate cancer does indeed have profound effects on his wife or partner is perhaps the single most important step in trying to deal with this problem.
There are things that you can do about this on your own. There are things that your wife can do on her own. And there are things that you can (gradually) learn to do about this together. But the first thing you are both going to need to do is accept the realities of the situation and try to talk about them. Only then will you begin to be able to decide what you both want to do about those problems — together.
Your wife, for example, might be interested in learning about the “Bill of Rights” for wives and partners created by my friend Dana on her web site at HisProstateCancer.com.
You, on the other hand, might want to read the late Harry Pinchot’s speech that stimulated that Bill of Rights.
Ideally, you can both begin by talking to each other about how what Harry and Dana managed to put in writing affect the pair of you; how you react to the ideas in those two documents; what you really want to be able to do for and with each other, given the limits of the possible.
I understand that this may seem like a very small step for you. But it may be a very big step for your wife, and maybe you need to take the perspective that you are going to have to “woo her” all over again before you can get back to the comfortable place that you presumably used to share together.
Amy
Hi. My husband had surgery a little over a year ago and everything turned out good. Our sex life was not as much as it was before but I didn’t think it had to do with surgery, just thought we both were tired.
One day I found out that he was e-mailing another woman and had been for about 2 months or more. When I confronted him, at first he lied, and then said it made him feel good because she didn’t know what he had been through and she knew nothing about the cancer. He had left me emotionally and I had been there for him.
He has stopped since I found out and has started counseling, but i am still having a hard time with it. I never put him down and always built him up and told him how good it was and never complained, but he felt not good enough for me. Is there anything you can tell me to help me get over his cheating? I know they never met because she lived far from us, but it still hurts just the same. We have been married for 29 years, so I want to stay with him, but it’s just so hard thinking about him writing to another woman.
If you can help. that would be great. Thanks.
Cathy
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Amy says
Dear Cathy:
I am so sorry to hear your story. Men manage to respond to their sexual problems in the most bizarre ways sometimes. The idea that they should be honest about their fears and their concerns almost never seems to occur to them.
I have heard similar (although not quite the same) stories in the past, which all seem to be based on the man’s inability to confess his fears of loss of virility — which he then avoids by “proving to himself” that he hasn’t really lost his supposed sex appeal by transferring his affections (at least temporarily) to someone new who doesn’t know “the truth.” What I suppose I am telling you is that your husband’s behavior is far from unique, and seems to reflect a deep-seated problem common among many men that is based on their self image as sexually desirable.
One of the issues that you probably need to address here is whether your husband really “left you emotionally” (as you put it) or whether he was just unable to address the real problem by talking to you about it. Without condoning his behavior in any way, we do need to recognize that his behavior was limited to writing to this other person, who was also being left completely in the dark about the real situation. So he was misleading her too.
Here’s what I think. I think you should also talk to the counselor your husband is seeing to see if you can address your concerns too — first on your own, and then perhaps with you and your husband together. As I know you know, marriage is a journey, and sometimes we get lost along the way. It can take some hard work to find one’s way to the next rest stop after one gets lost — and of course one may have to persuade the male of the species to ask for directions at the gas station!
Perhaps this will help just a little. It is going to take you a while to forgive your husband this temporary idiocy — but he is male, and apparently there are some male behaviors that are just utterly incomprehensible to us when they happen! Getting your marriage back on track is what is important here, and that is going to need a little work on your part as well as a LOT of work on his!
I see a lot of pain here. But not a single referral to DO SOMETHING THAT DOES NOT HAVE THE MORBID SIDE EFFECTS.
You folks seem to think that ED and incontinence comes with the prostate cancer territory. It does not. This is why removal of the prostate should be banned except for extreme situations (I can’t think of any). There is no low side effect removal of the prostate! Don’t you get that?
Alternatives.
Hmmm
Burn somebody up with gamma radiation, you know the nuclear radiation stuff that CAUSES CANCERS!!
OR
Proton Beam Therapy (NO IT IS NOT RADIATION DESPITE EVEN WELL EDUCATED AND EXPERIENCED MEDICAL PERSONNEL CALLING IT RADIATION). These gentlemen need to take a quantum physics class. Electromagnetic waves and particles are not quite the same (can’t explain quantum physics in a nutshell). The bottom line is that proton or other atomic particle is a kinetic energy knife. It does not deliver the huge gamma ray radiation as does the ancient external beam radiotherapy and brachytherapy.
OR
Do nothing awhile. Good if you are old, bad if you are young.
And Amy, Men are not bizarre in response to sexual inadequacy. Men are men because they have a penis they can use when it is called for. Sorry that those without a penis can’t get that…
Another reason to avoid surgery and nuclear radiation. Those are antique treatments right down there with blood letting. You will have a lot fewer Dear Amy emails though.
Amy responded as follows:
Dear Richard:
You write that, “I see a lot of pain here.” You are, of course, correct. There is enormous pain here, and I hear it in your own message too.
I don’t know who “you folks” are. I claim no expertise whatsoever on the relative merits of the differing types of treatment. The inability of the entire medical treatment community to conduct studies that would help men to know whether prosate cancer treatment A is a better option for them than treatment B is just sad, but I am aware that it is actually much harder to do this than most people think — starting from the point that many men simply wouldn’t accept the idea of being randomly told they would get surgery as opposed to (say) proton beam [radiation] therapy.
I do have to say, however, that I am somewhat puzzled by your statement that the use of a beam of protons to treat any form of tissue is not radiation. I quote from the home page of the web site of the James M. Slater Proton Treatment and Research Center (under the heading “What is Proton Therapy”), where it clearly states: “Proton Therapy is a precise form of radiation treatment for cancer and other conditions.”
With respect to my views on male behaviors … and since I don’t have a penis … I just live with one close by … I think I and others of my sex are utterly entitled to consider some male behavior “bizarre” if we wish to. Please try seeing the behavior of the man in question (and other men like him) from the context of the females who were affected.
Re: ED … Prostate cancer is fueled by testosterene. Having an orgasm releases plenty of testosterene. No orgasm = longer prostate cancer-free life. Is an orgasm worth a shorter life?
Woman love touch and many never need penetration to have a strong loving relationship. Using lots of touch, good words and kindness will help make a happy mate. The erection issue is a male problem as much between the ears as between the legs.
As for proton therapy, go here to
look at the pix of the differences between the two systems. Also, this group is the trade group and their site has articles about secondary cancers and the difference between the two systems.
Upton Sinclair said it best: ‘A man’s ability to “understand” a new idea is hindered by his loss of income based on the new idea.’ Remember that the next time someone in a white coat tells you how much less time it takes to use high energy IMRT vs proton therapy. This means they make more $ with the same equipment which they may own. Some doctors may also receive “referral fees” for directing you to IMRT. It is sad that a sick patient needs to be their own counsel but it is necessary.
You are painting with a very wide brush, Amy … I think you have some issues that you need to address before giving advice to others. You really don’t have a clue.
Hi, Amy,
John Cassidy is right that “you are painting with a wide brush” and that “you have some issues [of your own] to address ….” But that’s true of me too in my book and companion blog Conquer Prostate Cancer (.com). In fact it’s true of any of us prostate cancer survivors or survivors’ wives like you, who are caring and courageous enough to write about coping with, and renewing intimacy and related issues after prostate cancer treatment.
The difference between John C. and me, Amy, is that I feel you are doing a heck of a good job offering your insights to others, based on your readings, your interaction with others, and your personal experience and deep empathy with prostate cancer survivors and their wives or partners.
Amy responded as follows:
Thank you, Rabbi Ed (blush).
Hi Amy, and all,
This is a late chip-in but I just got here.
Everyone is entitled to their opinion, but I think that Amy’s comments, and I quote, “Men manage to respond to their sexual problems in the most bizarre ways sometimes. The idea that they should be honest about their fears and their concerns almost never seems to occur to them,” shows a real insight into men’s behaviour. It hit home with me anyway. I think that Cathy’s husband was escaping his situation by indulging in something that he considered safe — a kind of cyber-flirtation if you like. To be honest I would rather own up to anything than to admit, I can’t manage it tonight dear. But moving on, I think communication is key here, and I believe that in a strong, long-term relationship such things can be resolved.
Is this board still active?
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Amy replied
Yes. Do you have a question?