Prostate cancer and sexual function implications and incontinence.

[sarahmj]

Hi my name is Sarah my partner was diagnoised with prostate cancer a year ago and was advised that treatment was needed, since then he has seen a further 3 consultants who all have said treatment is required. Unfortunately he is struggling with the thought of implications sexually and incontinence. I was wondering if anyone in the forum has any advice concerning these matters and also if anyone has gone through these problems and how they have overcome them. He does realise that he has to make a discission now as he cannot leave it any longer. Thank you

[Dr_WHO]

Please know this, while some treatments can make intimacy harder, doing nothing will eventually make it worce. This site is full of men that have undergone surgery, radiation, etc., and still have an active life, that can be intimate, that do not have leakage issues. There are side effects to any treatment. However, there is one side effect that can not be ignored - time. Treatment will give the two of you time together. Time that you may not have without treatment. Not getting treatment also has a side effect - loss of quality of life, loss of time. The cancer is not going to go away. It will become more and more evasive. The longer he waits the harder it will become to treat and side effects will become more devastating.

He may feel fine now but that may not last. Take it from me. I was fine with no indication that something was wrong, getting ready to go on a SCUBA trip with my wife when they found Stage 4 ductal prostate cancer. Had surgery last April, on hormonal therapy and will start radiation soon. Now I spend my days with the woman I love, having romantic dinners, going on long (>30 miles) bike rides with no leakage and enjoying life. My only regret was not finding and treating the cancer sooner as it is still in my body. I will never be "cured" and it may eventually take me. Please convince him that the sooner he is treated the more likely that they can cure him.

[Craig51 in reply to Dr_WHO]

Sarah, I agree. I had the same fears - we all do I think. But I had radiation treatment, with no incontinence at all, followed by Lupron treatment. I won't lie, the Lupron did affect my sexual performance, but it didn't end it.

Some guys do have issues, I'm sure, but in my case, my fears were much worse than the actual outcome.

[pjoshea13]

Hi Sarah,

My view is that some loss of sexual function is the norm. Dr Freedland has said that this should not be viewed as a possible complication of treatment, but as an inevitable consequence. Having said that, most men recover sufficiently to achieve penetration. For those who don't (like myself) orgasms are not affected, but there is the loss of intimacy. I know some couples where this ended up being a big problem. Thankfully, that doesn't seem to be the norm.

Incontinence is less common. With surgery, some training of the sphincter at the base of the penis is required. I wish I had statistics, but I believe the risk of continued incontinence is low.

When I chose treatment 12 years ago, it was because my chances of surviving the next 5 years without treatment were very low. With less significant PCa, active surveillance is an option. Your partner needs to know exactly what the survival risks are of no treatment. It might put the other risks in perspective.

Best, -Patrick

[Umpire20]

Do you know his biopsy "numbers" i.e. number of cores involved, % of cancer found, PSA, any family history? I have Gleason 6 PcA and have been on Active Surveillance since the diagnosis in December 2006 at age 59. The possibility of not having to make anew immediate choice may be complicating his decision making. -Jim

[Wrgatewood]

Hi Sarah. I was diagnosed in January and had similar concerns. At 52, I did not want to live with those side effects either. I also didn't want the secondary cancer risks from radiation. I opted for Focal Cryoablation surgery. Rather than removing the entire glad, my doctor froze my legions, leaving the remainder of the gland in tact.

I have had zero issues with incontenance. Sexual performance isn't back 100%, but I was able to perform after 30 days and it's getting better as time goes on.

After 60 days, my PSA went from 7.9 to 2.5. I have another check this month.

I had to travel to Florida to get this treatment. Since I am not a doctor, you should do your own digging. I found that the doctors I visited all told me the treatment I needed just happened to be the one they preform. You have to be your own advocate and make the decision you are comfortable with. I may need a different treatment over time, but for now, I am happen with my decision. Good luck.

[adlerman in reply to Wrgatewood]

You chose the only treatment that is repeatable. I had cryosurgery in 2002

at Celebration, Fl. - got rid of the cancer but ED problems. As most of you have said you have to decide what's most important to you and which treatment will get you that outcome. You also have to realize there are no guarantees. When

the push against smoking heated up there were always stories of someone who smoked a couple of packs a day into their 80's or 90's without getting cancer.

I never saw a healthy smoker but if smoking is that important to you you can roll the dice. Same with prostate cancer.

[scarlino]

At the end of the day he has to realize that no treatment will definitely end any worries he has, but if he wants to remain alive as long as possible, do some research and pick the treatment option that you are comfortable with I giving you the best quality of life possible. There are risks of course and some function may not return, but he has to choose what's important to him.

[wellness]

If he is eligible for proton beam therapy, that tends to be the least damaging.

[jimreilly]

The guys who have already answered are correct. If treatment is necessary to save his life then it has to be faced. The reality is that the huge majority of us here have had sexual issues after treatment (an RP in my case) and some of us have had significant incontinence (true in my case, severe enough so that I had male sling surgery, which helped). The sexual issues sometimes take a long time to sort out and learn to live with, because, let's face it, this is a pretty essential part of our identity. There is often some real grief involved.

There are things that can be done to mitigate the effects, and your partner's doc should know of your partner's concerns ahead of time. Like low dose Viagra starting after surgery to preserve what functioning is left, for example. Other methods of enhancing male sexual functioning (other meds, injections, etc.). Not anything most of us like to think about. It's pretty easy to find written material about this stuff.

Many guys have found satisfaction and some measure of content and/or acceptance, ESPECIALLY when they are open with their docs, have a cooperating doc, and a supportive partner helps, too! One word of warning--some docs are not terrible upfront about these issues or make the risk to sexual functioning sound less than it really is. If he has that kind of doc, he needs a new one.

A few lucky guys don't have significant problems; I didn't count on being in that group and I wasn't, so at least my realism spared me more disappointment.

[RA-MA]

When my husband had surgery, it had spread. I can't even tell you how much we wish the three negative biopsies he had in the years leading up to the MRI showing spread, had shown the prostate cancer then. His cancer grew anterior/superior so was hard to get from a needle biopsy.

We had a good friend who had robotic surgery and his cancer was contained to the prostate and has normal function and NO cancer. Best to get it OUT! I miss our intimacy because his T is low so he is doesn't miss it. I'm just glad to have him. Only thing that stays the same in life is change. It's just a change. Don't hesitate. Life goes on either way and it's better to be as healthy as possible. Go to a tertiary center that specializes in cancer and go forward as life leads you.

[westseraph]

A number of questions have been well-addressed by others; I 'll speak to the sexual and relationship effects. I have stage four prostate cancer, diagnosed too late over three years ago. Treatment has taken away some sexual options. I haven't come since 2012. I am, at this point, able to manage a serviceable erection, but the libido isn't strong or frequent behind it. I feared losing some of the intimacy I had with my husband. As my body changed and warped, I feared losing his attraction to me; I feared he would be repulsed by the changes. Here's where a loving partner is vital: My husband never shared any turn offs he might have struggled with. Instead, he touched me MORE than he used to, in most circumstances, every day. On the occasion we tried sex, he explored my reactions and occasionally verbalized questions. As libido was absent for a while, then came back gently and inconsistently, we learned to occasionally get naked under the covers and cuddle with no expectations. If it kickstarted sex, fine, if not, fine.

My husband's approach extinguished my fears. That's what it felt like: My fears were starved of oxygen. They withered and died. There are so many little touches when we're in private that I experience a sort of withdrawal when we're out in public too long. He does too.

Direct communication is important. If I go too long without touching him (perhaps I'm in bed reading), he will come find me and say something like "I miss you. Come sit with me. ". When he's on his laptop, and I'm not sure how focused he is, I'll give him a heads-up ("Incoming"), letting him know I'm about to, say, kiss his forehead.

It's been more than three years. The touch ramped up and never let up. Endorphins are really powerful. Cuddling often takes the edge off pain, occasionally even reducing my need for meds. We still every so often enjoy what we can do sexually, but sex is a subset, part of the greater enveloping warm blanket of loving touch. This has made even chemotherapy more easily bearable.

[Stevedl]

Sarah, prior to my RP, 2012, I started Kegel exercises and then restarted them a few weeks after the surgery. I learned the exercises at a PT office, where my wife worked. Other than an occasional mini leak, I have had no incontinence issues. However, ED is my side effect. Part of the issue was due to the fact that I developed 2 iguninal hernias the same year. Recovering from them (up to a year or more), caused or enhanced my ED issues. I don't want to discourage your partner as there are many options to counter ED - Muse, pills, injections, vacuum pump and an implant. Based on my family history of prostate issues and cancer, a RP was an easy decision. Thank God, I have been cancer free for over 4 years, the ED is just a slight inconvenience. Steve

[rowboattom]

A problem exist and it needs to be handled. Cancer can end his sex life forever.

Good wishes

[Egerdes]

Go to my surgeon Dr Samadi.

I had a Gleason 7 (4+3) 3 1/2 years ago.

His one hr. robotic surgery save my life and my quality of life. Still

PSA undetectable

No urine problems

Enjoying sex regularly with my wife.

He has done over 7000 robotic prostecttectomy ( nerve sparing) with great success.

He is located in NY Lenox Hills hospital.

Time is not your friend.

God bless and good luck.

[Umpire20]

Dr. David Samadi and/or Dr. Ash Tewari would be among surgeons I would choose for laparoscopic prostatectomy especially in NYC area. However at age 70 on Active Surveillance since Dec06 hope to continue living With PcA.