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Better or Bitter After Diagnosis of Prostate Cancer

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Posted 8/19/2014 4:31 PM (GMT 0)
In my case it wasn't one or the other. For a while I was bitter, and then I got better.

In a survey on my website 275 men answered the following question:
How has surgery effected your relationship with your partner. These are the results:
It brought us closer together(128)47%
It has caused some problems(94) 35%
It has caused many problems(27) 10%
It has ruined our relationship(7) 3%
We broke up after surgery(16) 6%

Some couples were fortunate in that they maintained their level of closeness and/or became closer right from the start. I didn't take that path. I was warned based on my Urological history I was at high risk for losing urinary control for the rest of life. Hearing my Urologist give me that warning, was very different from living with the reality of changing my diaper 15 times a day. To say I hated my life and regretted the decision I made to have surgery was understatement.

If at any time during those first 3 months post-surgery someone offered me a button to press that would undo my decision and live with consequences of not treating my prostate cancer, I would have pushed that button without ANY hesitation. Needless to say I was more than depressed, I wanted to die. During that phase of the journey my relationship with my wife got much worse, not better.

Once I got down to 1 pad a day things didn't get better either. Things continued to get worse. I had a severe case of climacturia-(urination during orgasm) No one ever told me this could happen or what to do if it does.
My wife was wonderful. No disgust on her part at all. Not me. I was totally disgusted and ashamed. I thought I was dealing with this because of my urologic history not because it's something that happens to many men post-surgery. This gave me an excellent reason to avoid sex. Since my libido had dropped to zero I didn't mind the loss at all. My wife minded A LOT.

It took us more than a year to work things out and to return to the level of closeness we had before surgery.
It took another year after that before we'd go closer together. There's no doubt it would have been much easier to give up. Given our faith-based view on marriage, thankfully that wasn't an option.

One of the things I like best about Internet support is that you can talk about things that you might not say in face to face support group setting. It would be too uncomfortable and you'd need a certain level of trust which takes time to develop.

Sadly I found my healthy friends were clueless. Especially when I was depressed. When I received the news that cancer was confined to my prostate, rightly so friends and family went into a celebratory mood. They were delighted. Not me, I couldn't share their joy and they didn't understand my depression. A comment such as "What are you depressed about you were cured of cancer" really shuts down the desire to share.

On the Internet you can put things out there and people will respond, some helpfully some not so helpful. Since your identity isn't known your free to say/write whatever you are going through.

I've found that Internet support which allows for meeting people on the same journey was invaluable as a source of hope and help. I encourage both men and their partners to share their struggles here in order to receive understanding, support and help.
Posted 8/19/2014 5:46 PM (GMT 0)
Rick,

Your thread offers me a chance to do some text recycling. A friend was curious why I was considering a penile implant. My response (edited slightly in accordance with my constitutional fifth amendment rights) follows.

I don't remember you and I discussing that before. Certainly a fair question.

Trimix works well for me, consistently and every time, and across a surprisingly wide range of doses (larger doses don't seem to make much difference.) But it only works when my torso is vertical. If my heart is well above Mr. Unreliable it works great. I can stand up, sit down (provided I don't recline or slouch), or kneel. Sitting on the toilet is particularly good for some reason. But if I lay down so does he.

I attribute the problem to a combination of two potential problems -- a venous leak or arterial insufficiency. I had a bit of ED before surgery -- I responded well to PDE5i drugs overall although I had the occasional failure. It seems likely to me that my ED may have been in part a circulatory problem related to years of "metabolic syndrome". My surgeon described my nerve-sparing as "some, mostly on the left." So, from a neurological point of view my chances of regaining natural erections are a bit of a long shot. While radiation isn't good for the nerves -- in my case that part of a nerve on the left -- it is likely that the effect on the flexibility of the pudendal arteries is a larger cause of ED after treatment. Add to that the atrophic effects of the ADT which is known to make both arterial supply and venous leak problems worse and it is hard to escape the conclusion that recovery of natural erections in my case is unlikely. I am, in short, toast.

To some extent arterial insufficiency and venous leakage are the same problem -- blood leaks out faster than it arrives -- but I have a theory that you could determine the difference by measuring the number of bars of vacuum a man pulls in his VED. I really need to do some pumping to get results with my VED. Its a real struggle to keep other anatomical features from being pulled into the tube -- scrotal skin, tiny little ADT testes, navels, knee caps: stuff like that will all migrate there if I am incautious.

The accompanying problem is that I am also incontinent. I am pretty much dry when I am laying down, and I leak worst in the evenings when my pelvic floor muscles are tired. Unfortunately, this makes sex with trimix problematical. If I lay down I lose my erection and if I kneel I pee all over everything (and, more to the point everyone). Most of my trimix use to date has been for rehabilitation and most of the "treatment sessions" are spent standing in the shower or the bathtub. So, I take longer showers than any teenager but, what with my ADT, they haven't been much fun.

Since I am tired of diapers I am talking to my surgeon about either a sling or an artificial sphincter. An implant can be added to that surgery using the same incision and, since I will be at or above my out-of-pocket maximum on my insurance after the sling/AUS the implant will be free if I get it at the same time.

You are right, it's a big, scary step. We have a few guys on the forum who have been successfully treated for the "can't lay down with trimix" problem and maybe I could make something work without the implant. But I doubt it. And the wife and I are sort of out of practice -- no sex for 26 months now (unless you count two total failures early on, one with the VED and one with trimix). When my ADT wears off and I have, hopefully, fixed my urinary leak, I am going to want to restart my sex life. I expect three things to be in short supply: my confidence, my peri-menopausal wife's patience, and our remaining lifespan. I won't have time to wait around for miracles.

Oh, and by the way, that's one of the reasons I am interested anything that it might help in eliciting miracles before the surgery. Sort of like Fritz up on the roof of the castle with the kite in the thunderstorm helped doctor Frankenstein. If I can bring things back to life by having lightning strike my rod, well and good. Otherwise I will go the bionic route.

I don't have time to mess around if I'm ever going to mess around again.


I realize that the above is a little bit more "Mr Fixit" than you were looking for and a bit less about how the wife and I are coping. So about that: My wife and I have a strong relationship that's holding up fairly well. She is always happiest when we are traveling. When we get home she tends to stress over my cancer, and money, and her work. She has said she doesn't miss the sex that much, and if we can't make it happen again she would be OK with that. She was trying to be reassuring, but she doesn't say it much any more because she has noticed that I don't seem to be that reassured by it. Actually (and I realize I may be projecting) but I think she does miss the sex, or at least, not having it contributes to her stress. Time spent in intimate relations gives you a break from your worries. It's something a couple can do together and drop everything else for an hour. Sort of a mini vacation. But for that to work it first has to work, if you get what I mean and with apologies to Yogi Berra.

Of course there are no guarantees and maybe I'll have to admit defeat at some point. But I'll cross that bridge when I come to it. But you should know that if the river isn't too wide or too deep, I'm getting wet.
Posted 8/19/2014 6:06 PM (GMT 0)
+1 for "brought us closer"
Posted 8/20/2014 3:18 AM (GMT 0)
Good story there Rick. Sure your experience will ring bells with other men that are or have felt some of the negative aspects you wrote about, and they won't have to feel alone with their feelings.

For most men after PC, there are adjustments to what is now "normal". Normal changes for everyone that undergoes surgery for sure, not everything will every return to the pre-surgery normal. At the least, one has to get use to having "dry" orgasms.

Bitterness is such a poison to the mind and spirit, its best not to go down that path if one can help it.

As far as relationships go, if it was strong before, it often stays the same or gets better after. For those that had touchy relationship prior, it often can lead to a deterioration along the way. A serious medical event in one's life is a sure way to see what a relationship is really made of.

Thanks for sharing your story and update.

David
Posted 8/20/2014 8:09 AM (GMT 0)
Great story Rick...Keep it up.
Posted 8/20/2014 11:17 AM (GMT 0)

RickRed40 said...

Sadly I found my healthy friends were clueless. Especially when I was depressed. When I received the news that cancer was confined to my prostate, rightly so friends and family went into a celebratory mood. They were delighted. Not me, I couldn't share their joy and they didn't understand my depression. A comment such as "What are you depressed about you were cured of cancer" really shuts down the desire to share.

Good health is a crown only the ill can see.

Everyone fears cancer. Sometimes I think the dismissive remarks from well meaning healthy friends are really externalizing a type of self-talk. They are claiming a future vision that if they ever had such a diagnosis, that they would be thrilled just to have it cured. They have no way of understanding the reality of the treatment side-effects, and for sure don't want to hear about it. Most folks would far rather just whistle past the graveyard, and not think about it. Or, think about it in a fanciful way that it is for sure curable.

That's why some things get so much publicity too, like the idea of just avoiding sugar so you don't "feed" the cancer. People like to think that if they were ever diagnosed, then they could just take the mildly unpleasant dietary route of avoiding sugar and they'll be right as rain. (By the way, "sugar feeds cancer"? Duh, sugar feeds every cell in the body! It's glucose, and that's how fundamental cellular metabolism is fueled. I don't see that "avoiding sugar" does any particular physical good, FWIW.)

This forum provides empathy, people who REALLY understand. We're mostly walking the same road to varying degrees. Come here to find people you can really talk to about this. Most healthy people are scared by the topic and just don't know what to say.

My wife and I have grown closer through this, even though the physical relationship has certainly changed.

Jerry
Posted 8/20/2014 3:59 PM (GMT 0)
I appreciate those who took the time to share their story as well. Receiving the initial diagnosis of prostate cancer is frightening. For those who choose aggressive treatment, whether it's surgery or radiation for the majority of those men is a different life on the other side of treatment.
Men and couples aren't given much information or support with regard to what to do and how to cope with the aftermath of their treatment choice.
For men with surgery, here's my list of things I didn't know about until they happened:
1. Temporary impotence after the biopsy-for 2 weeks. I to find out about this on a google search.(Few if any pre biopsy consent forms list this as a possibility)
2. Extremely painful bladder spasms following surgery. I'd never heard of a bladder spasm and no idea
what that pain was about. On occasion, they were was so strong they could knock me off my feet.
3. How do you know when it's time to change a diaper. I had to learn the hard way which involved wetting my clothes for days, until I refused to leave the house until I figured out how long I can stay in a diaper.
4. Urinating during orgasm-Didn't even know there's a word for this "Climacturia" I was too ashamed to discuss this. If I had known you can greatly reduce this leak by having your partner assume the top position and urinating right before an orgasm which isn't romantic, but then again neither is urinating on your sheets or on your partner.
5. That men are capable of an orgasm with a flaccid penis and that's something most men will need to adjust to and experience post-surgery.
6. That I'd lose the ability to ejaculate-didn't know that until AFTER surgery.

There's a lot for men and couples to cope with after treatment. Being a prostate cancer survivor is more than fighting against prostate cancer, it's also about adjusting emotionally, relationally, sexually and for some spiritually to a new reality.
Posted 8/20/2014 5:16 PM (GMT 0)

Rick,

                 Thanks for a great post. Most of the issues you have mentioned has been an issue for me to some degree. I didn’t know all this stuff was going to happen to me. I watched all of the You Tube videos were the men was dancing a jig 3 days post surgery. I watched the actual surgery on you tube as well. Nothing to it, a few little snips of the robot and all was repaired. The first clue should have been the pain from the biopsy that I wasn’t warned about. Man felt like he left a D 9 Cat up there still running. Then the five days in the hospital, now that pain felt like he left a freight train up there loaded with D9 Cats. On my last visit to the URO I told him about HW. I suggested to him that he should give this info to all of his patients.

I also suggested to him that he needed to get some help for his patience that may be going thru depression over this surgery. He is a great guy and I feel he will follow through. My marriage has strengthened thru all of this. I have a very understanding wife; she has been a true blessing. She helped keep me sane during some dark days. I had ED before surgery so it hasn’t been a big deal for us. I am looking into getting an implant hopefully in a few months. I am down to a pad a day but still leaking some at night. I have been taking Myrbetrig the past couple weeks. It has helped me a lot and has stopped most of the leaking at night.

I left mine in Smyrna, Tn

 

        

Posted 8/21/2014 2:34 AM (GMT 0)
TC,
I watched some of the same You Tube videos. Guys bragging the went out golfing weeks after surgery. They were all praising surgery and the fast recovery process. I never saw a video made by someone who said "I went through 15 diapers a day and needed a pad for 19 months." Too many men have surgery without any real preparation as to what life without a prostate is like.

Glad to hear your wife as been supportive. I've heard from many men who've had implants. Do your research as to what type of implant you choose. The men I've heard from say there is a lot of discomfort/pain after the surgery, but they thought it was worth it because they were so pleased with the results. Wish you the best.

I have a Facebook page where men from all over the world share where they left their prostate. Appreciated reading where you left your prostate.
Posted 8/21/2014 5:10 AM (GMT 0)
I was never bitter about the DX - always stayed more on the, "shocked and can't believe this crap." side. Not sure I am better but I am still alive and living life.

That's all that matters to me.
Andrew
Posted 8/21/2014 8:54 PM (GMT 0)
That is funny, my wife told me I had this look on my face of confusion. She said it was like I was saying, WHAT JUST HAPPENED TO ME? Really guys do your research and don't get dazed and confused. You will get used to this new norm. I notice in these blogs that men that has never had ED or married to a young woman seems to struggle the most. Mr Happy is important to me, but he isn't my world or my wife's. We can monkey around, be creative and have a ball. Besides that we save a lot of money on kleenex. about to retire, gotta watch the pennies. LOL
Posted 8/22/2014 7:38 PM (GMT 0)
..Great thread..
Posted 8/22/2014 7:45 PM (GMT 0)
Thanks
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