My husband has always worked long hours … and enjoyed it in his family-owned business. I stayed home and raised kids and took care of everything so he could work. Not my choice. I feel I sacrificed a career for my family. I begged him for years to be with his family more. He has always abused his health and one tingso harm himself… His cholesterol was 400 recently — with medication. He has deceived me financially and in other ways that were hurtful over the last few years — not worth detailing. We no longer are in our grandchildren’s lives because of divorce. We had been very close. We have always been private. I never once discussed feminine bodily things with him. Our children were very far apart in age and we just recently had begun to enjoy spontaneous sex for the first time ever. In reading about sex post surgery — let’s just say shots and vacuum devices — not with me! Sure I like to cuddle and kiss … when it leads to intercourse. And yes, I like performing oral sex … on him! I feel like at our age (in our 50s) with this we will have no life. I read stupid stuff like there’s no sex in the grave … Not for him! Work on sex? Really? For one of the only pleasures we’ve had in life lately … and its going to be work?

*****

Amy replied as follows:

Dear Effie:

Clearly there is a lot more to all this than the fact that your husband has been diagnosed with prostate cancer. You obviously feel like you have been getting the short end of the stick for years, and it sounds like you have too. You are probably utterly entitled to feel angry and misled and frustrated.

I would like to be able to tell you that “everything will be fine.” I would like to be able to tell you that this will make your husband a better man. I would like to be able to tell you that — with 100% certainty — he won’t be impotent after his treatment. … but you know as well as I do that I can’t make promises like that. They would just be another bunch of lies that you don’t need to hear.

There is one thing that perhaps you and your husband really need to talk about, however (if you can). That is, does his prostate cancer really need immediate treatment at all? Lots of men rush into surgery or radiation therapy thinking that their prostate cancer is going to kill them, but in many cases that simply isn’t the case. If your husband has low-risk disease, he may not need immediate treatment. Indeed he might even have indolent disease that will never need treatment. but just needs to be carefully monitored using a process known as “active surveillance.” This is a serious issue. If the cancer is going to destroy your marriage but your husband may not even need immediate treatment, then you need to be able to talk about this if you can. You need to know his PSA level and his Gleason score and just how risky his prostate cancer really is. The you need to find a doctor to talk to together and who you can both really trust … not someone who is mentally committed to giving your husband surgery tomorrow, but someone who understands about quality of life.

I’m not a great believer in sainthood as a basis for a good marriage … but for all the anger I can hear from you, I am also hearing a little voice in the background that says you still do love your husband, for all his apparent faults. Only you are going to be able to decide where to set the bar.

Appointment with medical oncologist comes next and I’m just glad he is open to learning all we can before making a decision that will affect both our lives.

Susan

My husband’s doctor indicated today that the prostate cancer has indeed metastasized to hip and some spine bones. He is scheduled for a pelvic/abominal scan on Wednesday to see if any organs or the lymph nodes are affected.

The doctor went over the requirements for Provenge — that my husband do the hormone therapy first or it will cost us $93,000 private pay. The idea of going through hormone therapy is very upsetting to my husband and I can’t say I blame him. … It seems there are no real options to avoid the side effects, no matter what. We are going to talk to a medical oncologist soon, but I’m wondering what other treatments might be out there. I’m contacting our local hospital where there appear to be trials going on and maybe he’s a candidate.

He is going to go back to some supplements/herbs that seemed to lower his testosterone before, but I think they will not lower it to the point that will bring down his PSA to 1 or 2. The doctor said that that was the level needed to stop growth of prostate cancer and it might as well be done with hormones — same side effects.

I don’t know what we will do. I am afraid for him and I am also thinking that I would be refusing hormone therapy also if it were me. I wonder what doctors do themselves when facing these various choices.

Open to any comments you or your readers have …

Thanks

*****

Amy responded as follows:

Dear Love8Cats:

There are several different things going on here, and we need to be very clear together about the differences between them.

The first is your husband’s fear and dislike of hormone therapy. This fear and dislike are understandable. Some men have a really hard time with the idea and the reality of hormone therapy. However, I have to tell you that there are also men for whom it is not really a major problem at all. One of the things your husband (and you) need to understand is that if he tries it and just can’t deal with it, he can stop the therapy. On the other hand, if he doesn’t try it, he may never discover that, in his case, perhaps, the side effects will prove to be eminently manageable.

The second is the fear of the cancer itself. Your husband, whether he takes the hormone therapy or not, has an incurable clinical disorder. He may live with this for a relatively short time (a few years) or for many years. No one can tell you the answer to that question. What I can tell you, however, is that every day of life can still be savored, and to savor those days of life one needs to accept reality. This can be very hard to do, which is why people talk about the steps toward the acceptance of a diagnosis of cancer (denial, anger, bargaining, grief/depression). Obviously it is not clear to me where your husband is on this journey. Not everyone goes through every step, but everyone does go through some of them.

The third, is our natural predisposition to believe that, “This isn’t going to happen to me; there must be another way.” Humans always have this response when faced by the “unacceptable.” It is only the degree of the response that varies. The sitemaster for this web site, who I have known for a few years now, always smiles and says, “I am blessed with the fact that I understood, from a very young age, that sooner or later I was going to die. As a consequence, that reality has never really concerned me, but I have become smart enough to recognize that my attitude toward death is somewhat unusual.” I am old enough myself to be able to understand how he can be so acceptant, but you can trust me when I say that I am not that acceptant myself.

With respect to what doctors themselves do … They are just humans; they respond the same way as the rest of us … some with patience and acceptance; others with anger and reluctance and long denial.

Now there is one other important thing you need to appreciate. There is a school of thought that says that the effects of hormone therapy over time are minimally affected by when one actually starts hormone therapy. And there are very limited data on whether starting hormone therapy early is really any better than starting hormone therapy late for men like your husband. There is going to come a point in time when the growth of the cancer will cause pain that only hormone therapy can effectively relieve. By then your husband will be willing to accept hormone therapy. However, he does not have to start it now if he can manage without it. You can and should explore together the other possibilities that may be available through clinical trials — but I do need to warn you that most of those trials are designed based on the assumption that a patient like your husband has already had or is already on hormone therapy.

Finally, you and your husband need to work out a way to promise each other to enjoy every day together … to begin by telling each other that you will both take a little piece of each day and just forget about the cancer to do something you both love or want to do … for yoursleves, for your family, for a friend, for the eight cats, whatever. This may be hard in the beginning, but it is part of the process of moving on with life, whatever else happens.

I wish I could tell you that the situation was other than it is … that I knew of a new treatment that was going to be available tomorrow that could put your husband’s disease into remission for 20 years with almost no side effects … but there isn’t (that I am aware of), and so I can’t.

Amy

My husband was diagnosed with prostate cancer 4 years ago. It was encapsulated (right word?) and seemed to be responding well to alternative treatment until last week when a color doppler and MRI may indicate that it has metastasized. It was a shock. We thought he would continue to do his diet/exercise/Vit C and laetrile infusions/millions of supplement process and it would at least stay in the prostate. We have found a local urologist who has experience with Provenge and are in the process of confirming what the status is. … This doctor is so kind and gentle and is honoring my husband’s steadfast belief that cutting, burning, melting, etc. is not something he wants to do. … The PROVENGE is a form of immunotherapy (?) and we wanted to find out if he is even a candidate.

I’m just wanting to prepare myself for anticipating what he will feel, do, want, etc. if and when he gets involved with hormone therapy (which I think they have to do before Provenge) and beyond.

I am so glad to have found this and will take full advantage of it when things start “rolling.” And I hope my husband will do the same.

Thank you, Amy and all the women/men who have already posted. You never know how your words and experiences will help others and there is certainly comfort in knowing you are not the only ones out there.

Amy answered:

Dear Love8Cats:

Individual responses to treatment with things like hormone therapy (also known as androgen deprivation therapy or ADT) and immunotherapy with sipuleucel-T (Provenge) can vary a great deal. The first and most important thing is to make sure you have the best possible insight into whether your husband’s cancer has or has not really metastasized: there is a big difference between the cancer starting to extend out through the prostate capsule (extraprostatic extension) and actual metastasis.

I do need to tell you though (as much for the benefit of other readers as for you) … Trying to manage prostate cancer with alternative therapies, exercise, diet, vitamin C, and “laetrile” is a risky business. The majority of cancers will progress over time under such management. This does not mean that one cannot put off the need for more aggressive forms of treatment. One can. However, there are no good date to suggest that alternative forms of therapy like this actually extend the time to metastasis, let alone overall survival.

One last point … I don’t know what your husband has been using that he is calling “laetrile,” but it is banned in the USA and has long been associated with signifciant clinical risks. I don’t know any reputable physician who would recommend such a product to a cancer patient today.

Now I’m wondering why the doctor didn’t discuss the Gleason score, which I will ask him about, but with what you said I think I will get a second opinion because I think he is pushing me to have it removed. My PSA level did go from 0.09 to I believe he said 2.39 since 2010. When I find out more I will let you know … and thank you to the other reader also.

Amy responded as follows:

Rich:

Before you go get a second opinion (if that’s what you want to do), make sure you get the following from your current doctor:

– A copy of the pathology report on your biopsy; this will tell you your Gleason score
– A clear explanation of your clinical stage
– A clear explanation of why he believes that you need surgery

Remember, your doctor may well be correct in his recommendation to you, but he may not have explained well enough for you why he thinks that treatment is important.

It does need to be understood that age 42 is a relatively young age for a diagnosis of prostate cancer. While you may not need treatment immediately, there is a strong possibility that you will need treatment at some point. Younger men do tend to recover better from treatment than older ones, so there may well be good reasons to consider treatment earlier rather than later. Your Gleason score and your clinical stage are critical factors in making these decisions.

Amy

Your advice to Rich about when to decide to have treatment for prostate cancer was very good. Other things came up with my husband’s decision to be treated for prostate cancer that he didn’t expect, such as an enlarged prostate, which had to be dealt with before he could receive treatment for the cancer. He got a hormone injection that lasted 6 months. It was about 9 months before he was finally able to undergo brachytherapy after his diagnosis. He is doing well now, 5 months since the procedure was done. His blood pressure went down also.

Amy answered as follows:

Dear Rich:

One would need a lot more information (your age, your PSA level, your clinical stage, your Gleason score, the number of biopsy cores you had taken, the number of those cores that were positive for cancer, other health issues) to even begin to address whether (a) you need to have immediate treatment for your prostate cancer at all; (b) you could defer treatment at least for a while if you do need treatment; or (c) you really do need immediate treatment.

If you joined the InfoLink social network and provided that information, there are people there who could offer you some preliminary guidance.

What is, perhaps, of at least as much importance is whether you have sat down and discussed all this with your fiance, because she is most certainly entitled to an opinion about this too.

I cannot tell you whether you, personally, could or could not put off the decision for 12 months or so. I can tell you that, in general, if a man has low-risk prostate cancer (e.g., a Gleason score of 6 or less, a PSA of less than 10 ng/ml, a clinical stage of T1c or T2a, only on or two positive biopsy cores, and a low PSA density) then simply monitoring the situation as opposed to treating it is (for many men) a perfectly reasonable option. Conversely, if you have high-risk prostate cancer, with a Gleason score of 8 to 10 or a PSA higher than 20 ng/ml, and a life expectancy of 10 years or more, then most people would indeed think that immediate treatment was essential.

Maybe that will help you to discuss this with your doctors. They are the right people to have this conversation with … along with your fiance.

Amy

*****

Amy replied as follows:

Dear Claire:

Just take one step at a time. Go and see the urologist, but make sure you write down all your questions before you go so that you remember to ask them all. This might turn out to be absolutely nothing … but it also might tun out to be important. What I am sure about is that it is a waste of your time to “worry” about it until you know what the problem is … if there really is one.

Look at the issue this way … It’s not like someone phoned you and said, “This is an emergency and you need to come to the hospital now!” They have simply advised you to go see a specialist, and I have to assume that you originally had some type of problem that caused your primary care doctor to send you to get a kidney scan.

There is one other thing I am sure about too. You don’t have prostate cancer! You can’t, ‘cos women don’t have prostates!

Amy

This is not about prostate cancer but it does relate to another cancer. My friend’s brother has just been diagnosed with bone cancer, secondary cancer of the oesophagus, stomach, kidney and liver and cancer in his lymph nodes… He was told yesterday it is terminal, though they are treating him with radio- and chemotherapy next week.

My problem lies in a conversation we had last week, when we all had a few drinks, and I was trying to instill the benefits of positive thinking in him. He asked myself and my friend if we would have a bucket list if we knew we were to die and we laughingly educated him about our silly requests. He did the same but one of his requests was that for 45 years he has always really been attracted to me and he would wish to have sex with me before he is incapable of enjoying lovemaking any more. I was shocked, as was my friend, but I have known her from the age of 5 and her family are very much a part of my life. Her brother is a few years older than us at 53 so I know him almost as long as I have known my friend….

I know what you will say. … I shouldn’t feel pressured, etc., but I do. … I feel guilty that he has only 12 months to live, that his life is being cut short, that he never had the opportunity to broach this subject with me, and that he would feel such rejection if I refused him this last wish. … And so, I have agreed that he and I should spend a few days together making love/having sex/conjuring up the feel-good factor … or whatever else one would wish to label it as. … May I add that this I am doing for my friend because I love her and for her brother, as I cannot refuse a dying man.

My problem is that upon discussion this man wants it to be as intimate as possible and with no protection. … Therein lies my fear. … What does this encompass for me? I can find no information on the net about what the side effects of treatment and his illness will have on my own health. I am reluctant to ask him or his sister what he has been advised. I can’t ask people I know in case they suspect anything. … So, could you please help. … I am stressed at the thought of what lies ahead and worried as my knowledge of the implications from a health perspective are limited.

And please don’t ask me not to do it as I cannot hurt him or my friend. … As I am sure you have guessed, he is married and discretion is of the utmost importance. I sincerely hope I do not come across as an idiotic woman with few or no morals. … I have been put in a very contrary position and feel my only option is to agree to a last request.

Thanking you,

Regards, Anonymous

Amy replied as follows:

Dear Anonymous:

So as far as I am aware you are at no personal health risk at all from this decision — with two important exceptions.

There is no meaningful risk to you from his chemotherapy or his radiation therapy that I am aware of. However, as you well know, you are at risk for any sexually transmissable diseases he may carry … from the blandest to the most virulent … and I absolutely do think you need to talk to him about that.

Most sexually transmitted diseases are minor in nature and easily dealt with today. Indeed, “post-coitally” so to speak, you could go and see your primary care physician and tell her that you did something really stupid with someone you trust a couple of days before and you just wonder whether it would be a good idea to take some form of antibiotic therapy for a few days just to be sure that you minimized the risk of any problem infection-wise.

However, you do need to feel very sure up front that he doesn’t have anything serious like HIV or herpes simplex virus or anything else like that. You know this man well enough that he ought to be able to put his hand on his heart and make you that promise … but I can’t tell you there’s no risk, because there is. If he has been monogamously married for most of the past 30 years or so, which may well be the case, the chances are that the risk is minimal … but you do need to discuss it. And if he has been running around with the odd woman here and there for the past 20 years, I would tell him that the whole deal is off!

The other issue is of course the (relatively small) risk of pregnancy. Since I am assuming you are not exactly in your prime child-bearing years, this shouldn’t be a major issue, and again, there are things you can do about this today should you think it is a possible problem (“morning after” pills).

Having said that … You are as mad as a hatter and I can’t believe you actually think this is a good idea … but what do I know!

I googled this website because I couldn’t sleep.

I’m in my late 30s with three children. Before my partner was diagnosed and treated for prostate cancer, we had been having frequent fights and arguments over my sex refusal. It all started when I found out he was cheating with me constantly with different women but I stayed on because of my children. Now it’s worse because I can’t seem to get intimate with him but he blames me and calls me names and says that I’m the cause of him having had the disease and that I also caused him not to have an erection anymore ‘cos I’ve refused him sex.

I’m drained emotionally. Is it true? That I’m the cause? I just find having sex with him repulsive. I have forgiven him but I just get turned off. What do I do? I’m confused! Please advise.

*****

Amy replied as follows:

Dear Elizabeth:

First, it is extremely clear that you and your husband have a very real problem. And so do your kids.

Second, the very real problem has nothing to do with his prostate cancer and everything to do with the state of your relationship. You didn’t “cause” him to have prostate cancer. You are not the reason he can’t get erections. And his prior behavior is where the problem began. (I am of course “taking your side” in my perception of the problem, because I assume you are telling me the truth. I am sure that your husband would tell me a quite different story.)

Third, arguing with each other about what has caused the problem is not going to resolve it. You and he need to make some decisions about what you actually want to do. The fact that you and he aren’t getting along (to put it mildly) has already affected the children. If you think that they don’t know that Mom and Dad are constantly fighting with each other, you are wrong. Of course they do. They can “smell it.” It’s in the air.

The real issue here is whether the two of you really want to stay together or whether you need to be honest that you don’t. If it’s the latter, then you need to find a way to restructure your lives in ways that will free each of you from what sounds like a near to impossible situation while at the same time ensuring that the kids are able to get on with their lives and understand that you and their Dad are also getting on with yours too. This may well have some economic ramifications for all concerned, and you and your husband are only going to be able to decide how to resolve this issue if you can stop fighting about the “substitute” problem and deal with the real one.

So first and foremost, you and your husband need to decide whether you still love each other and want to stay together (“for better for worse, for richer for poorer”; i.e., not just because of the children). If you do, then you need to stop fighting and work out what the implications are. If you don’t, then you both need to work out and agree on what you are going to do to make sure that you can put the needs of the kids at the top of the priority list while you decide how to separate your lives.

Sometimes in life one finds out that what one has got isn’t what one signed up for. Then one is faced by a very hard decision. Am I willing to do whatever it takes to change the situation for the better, or am I going to just suppress my own needs and put up with the situation because I don’t know what else I can do? I know which side of that question I would come down on myself, but I am not you … and I can’t make these decisions for you.

I hope this helps … if only a little bit.

Amy

He has been receiving external beam treatment. … And I am of child-bearing age … And we are interested in conceiving.

—–

Amy responded as follows:

Dear PG:

Then I really think the wisest thing to do is talk to the radiation oncologist and get an expert opinion. It has to be wiser than mine!

Amy