the emotional side of Prostate Cancer

TomBk

Hi,

I had a real roller coaster ride of emotions and depression foloowing my bout with this disease. I never found a survivor to talk to and my truck was broken down while I was dealing with cancer, actually, for 8 months until I scraped up the money for a new engine.

I was 53 when I was first diagnosed with the disease and now I am 54. I survived the disease but the surgery caused additional emotional stress and anxiety. I eventually had another surgery to put Humpty Dumpty back together again.

Even though I never got the support I needed and still need I would still like to help anyone who just needs to talk. I realize it is a rough road for all of you out there and each will find his own way of dealing with it. I am not ashamed to talk about it and I am not embarrassed that I had the disease. I did not hide it from my co-workers or relatives or anyone. I have actually tried to explain how bad the disease is to many.

Before I came down with PC I was totally ignorant and now I feel like the poster child for the disease. All my brothers were alerted to the need to get a PSA test now and they have. The PSA test saved my life.

It was accidental how I found out. I got a bladder infection, which I never have had before and was having raging fevers. On the 5th day I broke down and went to the doc and he did a random PSA blood test and my numbers were slightly elevated. The Byopsy followed with conclusive evidence that yes I did have PC. I went straight into denial. I just could not accept it. Since I am single I had no one to bounce thoughts off and it just got worse emotionally from that point on. How I held on I 'll never know. of course, I was praying like crazy. Not so much because of the threat of death; I am not afraid of dying. I was praying to keep my sanity and emotions under control.

In any case should any of you ever need a survivor to talk to I am here.

Hang in there guys.

Tom B.

stuart

Tom, your one of the few men who are willing to talk about the emotional aspects of PC...I have been going to a support group for five years and we have never had a discusion regarding the psychological and emotional aspects of PC...It's really the hardest part to cope with but I feel there's nothing one can do about it...The fact is PC is an emasculating condition and it's never going to be the way it was...Sorry for being so down but what's the up side?..

KMiyoko

My husband was diagnosed with prostate cancer in June of 2005. His PSA was 6.55 and his gleason was 3+3(6). He had the Da Vinci Robotic Laproscopic Surgery at the City of Hope in Duarte California on August 22nd 2005. He has talked to a number of men that need to talk to a prostate cancer survivor about having the robotic surgery. So, contact me if anyone would like to talk to someone who has actually gone through the surgery. If you want to know what to expect before and after the surgery from a guys point of view.

Willx

Tom, I am glad that you posted your thoughts about the emotional aspect of having prostate cancer. Being men, I guess we are to be tough about all this but I can totally relate to the stress and depression you have had. We can get a lot of information about the disease itself, but there is a paucity of information about how to deal with such a change with our bodies inside the head. I was diagnosed with prostate cancer over 7 years ago, but there is not a day that goes by that I do not wish I had never had this awful disease, and while I know my body will never be the same, that does not mean I can't wish that to be the case.

Thanks for posting your thoughts, and perhaps others will chime in.

popsvdb

Funny! I'm a year out from LRP. Been on many forums and involved with many support groups, just not this one. It doesn't seem that this is a very active forum. I can vector you to others if you are interested.

Meanwhile, regarding the emotional aspects, there is no question that they are significant. Still, one of my mantra's is that to be sucessful in beating the Prostate Cancer beast, one must be in charge of his disease; its treatment, its effects, its psychology. A half full glass is very important.

I think about my disease every day - actually I'm involved with it for probably more than an hour on average through activities like this, and others more direct.

I'm alive, I feel good, and BOY do I smell the roses these days!

jweindel

popsvdb said:

Funny! I'm a year out from LRP. Been on many forums and involved with many support groups, just not this one. It doesn't seem that this is a very active forum. I can vector you to others if you are interested.

Meanwhile, regarding the emotional aspects, there is no question that they are significant. Still, one of my mantra's is that to be sucessful in beating the Prostate Cancer beast, one must be in charge of his disease; its treatment, its effects, its psychology. A half full glass is very important.

I think about my disease every day - actually I'm involved with it for probably more than an hour on average through activities like this, and others more direct.

I'm alive, I feel good, and BOY do I smell the roses these days!

Hi, popsvdb.

I wonder if you are the same pops I see over on the alt.prostate.support newsgroup.

I agree that this forum is not very active, compared to that newsgroup, at least. In it, and in the Man to Man meetings I attend, we certainly explore problems with the emotional aspects of this disease. And, of course, there are many.

JerryW

TomBk

stuart said:

Tom, your one of the few men who are willing to talk about the emotional aspects of PC...I have been going to a support group for five years and we have never had a discusion regarding the psychological and emotional aspects of PC...It's really the hardest part to cope with but I feel there's nothing one can do about it...The fact is PC is an emasculating condition and it's never going to be the way it was...Sorry for being so down but what's the up side?..

Stuart,
I appreciate your viewpoint. You are right, it is a very negative and irreversible situation. It is just that when you talk to other guys in the same boat, it helps. It helps me at least. I wish I was the only man with this disease but since I am not it is helpful to know that there are other guys out there going through what I went through, guys who understand me. People with out PC don't understand me. But you probably do. We can encourage each other, help each other through the difficult times so we all beat this disease. Never in my life have I felt as alone as when I came down with PC. I have many friends, but none with PC.
Does that make any sense to you?

TomBk

Willx said:

Tom, I am glad that you posted your thoughts about the emotional aspect of having prostate cancer. Being men, I guess we are to be tough about all this but I can totally relate to the stress and depression you have had. We can get a lot of information about the disease itself, but there is a paucity of information about how to deal with such a change with our bodies inside the head. I was diagnosed with prostate cancer over 7 years ago, but there is not a day that goes by that I do not wish I had never had this awful disease, and while I know my body will never be the same, that does not mean I can't wish that to be the case.

Thanks for posting your thoughts, and perhaps others will chime in.

Will,
You know what? I agree with you 100%. I hate this disease with a passion; I hate what it did to me and what it is still doing to others. I just thought if we'd open up and talk about the emotional impact then maybe it wouldn't seem so bad. I am getting past it one day at a time and I am not sitting idly at home waiting for the pain to go away. I am getting on with my life by diverting attention towards the needs of others. People worse off than myself. But talking about it with you guys helps me to feel normal again. For a while I thought I was the only one going crazy from the emotional slam from PC. Just reading your responses helps alot. Thanks.

TomBk

jweindel said:

Hi, popsvdb.

I wonder if you are the same pops I see over on the alt.prostate.support newsgroup.

I agree that this forum is not very active, compared to that newsgroup, at least. In it, and in the Man to Man meetings I attend, we certainly explore problems with the emotional aspects of this disease. And, of course, there are many.

JerryW

Dear jweindel,

Could you share with me some of the things your support group has come up with in their discussions on the emotional impact of PC? I would be very interested in knowing how you guys overcome it. Thanks.

TomBk

popsvdb said:

Funny! I'm a year out from LRP. Been on many forums and involved with many support groups, just not this one. It doesn't seem that this is a very active forum. I can vector you to others if you are interested.

Meanwhile, regarding the emotional aspects, there is no question that they are significant. Still, one of my mantra's is that to be sucessful in beating the Prostate Cancer beast, one must be in charge of his disease; its treatment, its effects, its psychology. A half full glass is very important.

I think about my disease every day - actually I'm involved with it for probably more than an hour on average through activities like this, and others more direct.

I'm alive, I feel good, and BOY do I smell the roses these days!

Hi Pops,
This forum is not as active as I suppose it could be but it is the first one I have found where someone was actually willing to discuss the emotions that come with this disease.
I personally, am not into mantras, no offense, but the notion that it helps if you actually think about the disease each day instead of trying to sweep it under the rug is worth considering. Cancer is so negative that I find myself trying to block it out. I do stop and smell the roses and take time out for things I used to think were unimportant now. When I found out I had cancer my priorities did a maJor shift. Apparently my life is no longer threatened, but who ever knows for sure? Still coping with all the changes and doing it alone is a real challenge for me. I intend on coming out on top. Thanks for your imput, sir.

stuart

Sex
It's about time that the issue of emotions came up but doesn't that also include sex...Let's face it, it's not the same...If you have had surgery or radiation how can it ever be the way it was...I'm 57, so the fact is sex does matter to me... I would like to know how guy's deal with a deminished sex life...I have been married 29 years and until I started to treat this cancer, it was pretty damn good...I miss it...I take the meds so functionally it kind of works but not really...Sometimes I wish I never treated...But than again I did...Has anyone found a way to make it work emotionally and sexually?

jweindel

TomBk said:

Dear jweindel,

Could you share with me some of the things your support group has come up with in their discussions on the emotional impact of PC? I would be very interested in knowing how you guys overcome it. Thanks.

Tom,

I don't think any of us have come up with any pat solutions to the kinds of problems you bring up. Some of the guys who are having problems with anxiety and depression have found some relief in discussing their issues with others who have been through it. Looking for support and encouragement from family and friends is a big help. Often, just being able to talk about the issues that are causing the emotional problems, and finding out that there is some kind of normal life on the other side of all this helps.

Also, some guys get into treatment and are able to make some headway there. Again, I don't think any of us that I've talked with certainly have all the answers for you. Being single makes things even more difficult, I presume. I would seek out a good support group that you can interact with. Even if the group is hesitant about discussing emotional issues in group meetings, you may find some individuals with whom you can share your concerns and from whom you can get some positive feedback.

Jerry

TomBk

jweindel said:

Tom,

I don't think any of us have come up with any pat solutions to the kinds of problems you bring up. Some of the guys who are having problems with anxiety and depression have found some relief in discussing their issues with others who have been through it. Looking for support and encouragement from family and friends is a big help. Often, just being able to talk about the issues that are causing the emotional problems, and finding out that there is some kind of normal life on the other side of all this helps.

Also, some guys get into treatment and are able to make some headway there. Again, I don't think any of us that I've talked with certainly have all the answers for you. Being single makes things even more difficult, I presume. I would seek out a good support group that you can interact with. Even if the group is hesitant about discussing emotional issues in group meetings, you may find some individuals with whom you can share your concerns and from whom you can get some positive feedback.

Jerry

Jerry,
I appreciate your honesty and the fact that you are willing to share with me what you guys discuss. I think in my case just talking with other survivors helps. I can get on with my life for the most part but knowing that other guys were impacted emotionally and hearing how it affected them makes it easier for me to deal with my own feelings plus hearing what other guys did to help themselves gives me some ideas that I can try. I had never felt as isolated and alone as when I had no one who understood me to talk to. and even as you mentioned men usually are not wanting to even talk about it at all whether they have had PC or not and this makes it doubly difficult. But I am doing better since I have talked with you guys. I appreciate it alot. Like you implied it would be great to talk person to person with another guy. I may be too frank sometimes and open but the doctors did it to me! haha. I lost every shred of modesty going through the whole cancer treatment process. I am not bashful at all. It may be harder to talk in person about these things though because it is much different than talking like this.

TomBk

KMiyoko said:

My husband was diagnosed with prostate cancer in June of 2005. His PSA was 6.55 and his gleason was 3+3(6). He had the Da Vinci Robotic Laproscopic Surgery at the City of Hope in Duarte California on August 22nd 2005. He has talked to a number of men that need to talk to a prostate cancer survivor about having the robotic surgery. So, contact me if anyone would like to talk to someone who has actually gone through the surgery. If you want to know what to expect before and after the surgery from a guys point of view.

Hi KMiyoko,
One of the guys I have been talking with in this forum is going in for that surgery tomorrow. I had the Radical Prostatectomy surgery. I think the surgery your husband had was less invasive. by the way how is he doing? I will let my friend know that he can talk to your husband if he wants to.

TomBk

stuart said:

Sex
It's about time that the issue of emotions came up but doesn't that also include sex...Let's face it, it's not the same...If you have had surgery or radiation how can it ever be the way it was...I'm 57, so the fact is sex does matter to me... I would like to know how guy's deal with a deminished sex life...I have been married 29 years and until I started to treat this cancer, it was pretty damn good...I miss it...I take the meds so functionally it kind of works but not really...Sometimes I wish I never treated...But than again I did...Has anyone found a way to make it work emotionally and sexually?

Stuart,
I think like you do...that sex is important and very much so. In my case that was one of the major reasons my emotions plummetted so badly and I went into depression. I was impotent in a major way. For me the meds didn't do much and the penile injections only helped a little but I still couldn't get a firm enough erection to accomplish penetration. I finally had to go the way of penile implants. Of course I wish likw h**l that this never happened to me but it has so I have to deal with it. Sex is mainly in the brain anyways and if you can get an erection then getting your mind sexually stimulated is very important. With implants you can have an erection about as often as you want for as long as you want. In my case the orgasms are more powerful than before. The penis looks a little different which bothers me a little but it works just fine. Of course you are firing blanks so nothing is actually coming out but you still feel the pulsing climax. If you don't need implants then I am not recommending it for you because you have to realize you probably will never again have a natural spomtaneous erection again. You have to pump it up each and everytime. My suggestion would be for you and your wife to get together and be creative and try new ways of exciting each other. In the past you knew what worked for you and it was great but now the circumstances have changed and you have to learn all over again. I am sure your relationship is based on love and that goes a long way in a sexual relationaship. I certainly am no Sexpert but in reading various cancer recovery publications that is what I have read. Wish you the best, man.

TomBk

popsvdb said:

Funny! I'm a year out from LRP. Been on many forums and involved with many support groups, just not this one. It doesn't seem that this is a very active forum. I can vector you to others if you are interested.

Meanwhile, regarding the emotional aspects, there is no question that they are significant. Still, one of my mantra's is that to be sucessful in beating the Prostate Cancer beast, one must be in charge of his disease; its treatment, its effects, its psychology. A half full glass is very important.

I think about my disease every day - actually I'm involved with it for probably more than an hour on average through activities like this, and others more direct.

I'm alive, I feel good, and BOY do I smell the roses these days!

I am not sure what you mean by 'vector" me to other forums. I guess it means connect me with them??

stuart

TomBk said:

Stuart,
I think like you do...that sex is important and very much so. In my case that was one of the major reasons my emotions plummetted so badly and I went into depression. I was impotent in a major way. For me the meds didn't do much and the penile injections only helped a little but I still couldn't get a firm enough erection to accomplish penetration. I finally had to go the way of penile implants. Of course I wish likw h**l that this never happened to me but it has so I have to deal with it. Sex is mainly in the brain anyways and if you can get an erection then getting your mind sexually stimulated is very important. With implants you can have an erection about as often as you want for as long as you want. In my case the orgasms are more powerful than before. The penis looks a little different which bothers me a little but it works just fine. Of course you are firing blanks so nothing is actually coming out but you still feel the pulsing climax. If you don't need implants then I am not recommending it for you because you have to realize you probably will never again have a natural spomtaneous erection again. You have to pump it up each and everytime. My suggestion would be for you and your wife to get together and be creative and try new ways of exciting each other. In the past you knew what worked for you and it was great but now the circumstances have changed and you have to learn all over again. I am sure your relationship is based on love and that goes a long way in a sexual relationaship. I certainly am no Sexpert but in reading various cancer recovery publications that is what I have read. Wish you the best, man.

Thanks for your input, so to speak...I never thought about an inplant and that seems a little drastic but it works for you...Is it major surgery? How does it work? Does it actually feel good?

KMiyoko

TomBk said:

Hi KMiyoko,
One of the guys I have been talking with in this forum is going in for that surgery tomorrow. I had the Radical Prostatectomy surgery. I think the surgery your husband had was less invasive. by the way how is he doing? I will let my friend know that he can talk to your husband if he wants to.

Hi Tom,
Just want to let you know that my husband is doing well. He went to the City of Hope a month after surgery and his PSA was basically undetectable. He just went in to see his primary doctor last month and he also said his PSA was undetectable. We will continue to see the doctor at the City of Hope every 3 months for at least this first year as a precaution. So, far everything is going very well. I have been talking to a number of wives about the other aspect of prostate cancer. The wives point of view. Hey, guys...most of the wives I have talked to want to be very supportive...but don't know what you need. Tell them what you need. If you have a good relationship with your wife, she will be willing to help you through the potency problems or any other problems relating to this disease. Write me if you have any questions.
Kay

TomBk

stuart said:

Thanks for your input, so to speak...I never thought about an inplant and that seems a little drastic but it works for you...Is it major surgery? How does it work? Does it actually feel good?

Stuart,

Yes, it is a serious surgery but not as major as the radical prostatectomy. If you are going to do it I would chose the best. They have various models to choose from. What happens is a small incision is made just beneath the neck of the penis and two cylinders are 'implanted' into the penis itself, a reservoir is placed in the abdomen and a pump is placed in the scrotum. There is no scar to speak of later on. No, they do not remove either testicle. Once healed most of the time you do not feel it at all. It will be tender for quite awhile obviously. But once that is past it is good, very good. I actually have more intense orgasms than I did before. You can pump it up anytime you chose to and go for as long as you want to. It looks pretty natural and once the hair has grown back out on your scrotum then it really isn't visible.
I do want to caution you that it is not a bed of roses. Right after the surgery you will be black and blue. It differs as to how much from man to man; for me it was isolated just to the sex organs for others it is more. My scrotum swelled up big and hurt too. I had to place a rolled up wash towel beteen my legs and pushed up against the scrotum to keep it elevated. Also ice packs were needed and they really helped. and I did take pain medicine as well.
You need to remember that this is a last resort for men who cannot get firm enough to penetrate. in my case everything else failed and this was my last option. Perhaps in time other options will become available. I have talked with other men who had this surgery as well and they all liked it too. You forget about the misery you went through; it just fades into the background and you feel so much better to still have the ability to have sex. My penis was shrinking in size after the radical prostatectomy and I was afraid it would keep doing so, so I went for the implant surgery sooner. I am happy with it. Your doctor would be the one to give you the best detailed information on it. They do last a long time as well. As you mentioned it was drastic and I freaked out when they first suggested it to me. but I got a grip on it and thought about it hard and made the decision to do it.
Lots of people get injured and lose a leg or arm or hand and have to get an artificial one put on their body. They didn't chose to have artificial limbs instead of healthy limbs but they are very glad they live in a time when such things are available to add to the quality of their life. It used to be that penile implants were not available but we who have them now are glad they are. Each man just has to sort it out in his own mind and make his own decision. I hope this helps.

If you do choose to go this route feel free to talk to me anytime.

stuart

TomBk said:

Stuart,

Yes, it is a serious surgery but not as major as the radical prostatectomy. If you are going to do it I would chose the best. They have various models to choose from. What happens is a small incision is made just beneath the neck of the penis and two cylinders are 'implanted' into the penis itself, a reservoir is placed in the abdomen and a pump is placed in the scrotum. There is no scar to speak of later on. No, they do not remove either testicle. Once healed most of the time you do not feel it at all. It will be tender for quite awhile obviously. But once that is past it is good, very good. I actually have more intense orgasms than I did before. You can pump it up anytime you chose to and go for as long as you want to. It looks pretty natural and once the hair has grown back out on your scrotum then it really isn't visible.
I do want to caution you that it is not a bed of roses. Right after the surgery you will be black and blue. It differs as to how much from man to man; for me it was isolated just to the sex organs for others it is more. My scrotum swelled up big and hurt too. I had to place a rolled up wash towel beteen my legs and pushed up against the scrotum to keep it elevated. Also ice packs were needed and they really helped. and I did take pain medicine as well.
You need to remember that this is a last resort for men who cannot get firm enough to penetrate. in my case everything else failed and this was my last option. Perhaps in time other options will become available. I have talked with other men who had this surgery as well and they all liked it too. You forget about the misery you went through; it just fades into the background and you feel so much better to still have the ability to have sex. My penis was shrinking in size after the radical prostatectomy and I was afraid it would keep doing so, so I went for the implant surgery sooner. I am happy with it. Your doctor would be the one to give you the best detailed information on it. They do last a long time as well. As you mentioned it was drastic and I freaked out when they first suggested it to me. but I got a grip on it and thought about it hard and made the decision to do it.
Lots of people get injured and lose a leg or arm or hand and have to get an artificial one put on their body. They didn't chose to have artificial limbs instead of healthy limbs but they are very glad they live in a time when such things are available to add to the quality of their life. It used to be that penile implants were not available but we who have them now are glad they are. Each man just has to sort it out in his own mind and make his own decision. I hope this helps.

If you do choose to go this route feel free to talk to me anytime.

Tom...I appreciate you message...I'm not sure what to do...This is hard to talk about but my wife does not seem interested in sex with me since I was diagnosed... so the question I have to consider is; do I want to go through the surgery just for the psychological fact that I could have sex even if I don't...Does that make any sense? Also, do you have the desire or is it just mechanical?

TomBk

KMiyoko said:

Hi Tom,
Just want to let you know that my husband is doing well. He went to the City of Hope a month after surgery and his PSA was basically undetectable. He just went in to see his primary doctor last month and he also said his PSA was undetectable. We will continue to see the doctor at the City of Hope every 3 months for at least this first year as a precaution. So, far everything is going very well. I have been talking to a number of wives about the other aspect of prostate cancer. The wives point of view. Hey, guys...most of the wives I have talked to want to be very supportive...but don't know what you need. Tell them what you need. If you have a good relationship with your wife, she will be willing to help you through the potency problems or any other problems relating to this disease. Write me if you have any questions.
Kay

hey there KMiyoko,

Glad to hear your husband is doing so well. Sometimes what men need is to talk. We may feel like we are less the man we were. We are uncertain what the outcome will be. We don't necessarily want to be babied and pampered but we want to still feel like we are still the MAN! haha! We may withdraw because we are humbled and depressed by what has happened to us. Our identity is very much tied in with our being male. For many of us we are not used to being so vulnerable. We want to know that our wives are still attracted to us and we want to be the stud we were and worried that may be gone. wives can do all sorts of things, little things, that boost the self-esteem of their man. You wives know how to make us laugh , how to make us worship the ground you walk on. Most men probably don't even want to talk about it; they just want to get htrough it as intact as possible and get on with their life and put this nightmare far behind them. as you women know so well men don't always do what is good for them, that is why we have you. you make us do the right thing. many of you wives made your husband go to the doctor when he didn't want to and you probably saved their lives. Don't stop there. Our women are good for us and we need you. we aren't sure what we need because this is all new to us as well. But you women will figure it out.