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Life 16 months after RRP for early stage disease

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Posted 9/6/2013 12:10 AM (GMT 0)
I have not posted for a while. I wanted to post an update as I always found it interesting when I was just out of surgery to hear what I had to look forward to down the road. I apologize in advance to any one who has a tough situation who may think that I have little to complain about. I realize that those with advanced disease face challenges that are beyond the lifestyle issues that many are concerned with.

In my case I have done well medically. I have been undetectable through 15 months. I can honestly say I am essentially 100 continent. I don't feel like I did when I had a prostate but I don't get up at night, don't wear pads, can drink alcohol and excercise without fear. Certain positions can lead to a sense of impending leak - but it doesn't happen. This gets better every month - even now.

ED has been more of a challenge. I was young and thought that I would be OK in six months. Boy was I wrong- I had nothing for nine months and very little until a year. I have been slowly improving. I take cialis 5mg night and sometimes ten on the weekends. I can get an erection with stimulation to about 70%. This allows for normal foreplay and I take a quick 15mic caverject shot at the bedside to finish the deed. This allows for a fair sex life with my wife. I was depressed for the whole first year and essentially did not have any sex for 14 months although I took shots for rehab. It's all gradually improving but I now realize that I will likely not be what I was. I never have a spontaneous erection. I can't imagine I' ll ever get off the pills -just hope to not need shots at some point.

So where does this leave me mentally? I think about death more often than I ever did. This was my first medical scare and I realize at some point we all face something. I am not as positive of a person as I was. My energy is good - still excercise and work is ok. I am close with my wife. Our kids are out of their own and we have really been through a tough time. She enjoys our initimacy. Doesn't complain about the odd sex life but I'm sure its not what she imagined. I have changed and mellowed in some ways. I have lost my masculine energy. I used to like to flirt - tell a raunchy joke etc. I don't feel "like a stud". ED changes the way you see yourself.

Would I do it again? Not sure. I feel better than I did six months ago. Sometimes I wonder if you get better or you just forget how life was before prostatectomy and you get used to the new normal. I think about maybe I should have done surveillance or seeds of some other therapy. Other times I am glad its out and the medical side is hopefully behind me.

My advice to the newbies on the board. If you chose surgery - it's a long road to a new life - not a quick return to the old you. Wish I had realized this at the outset.
Posted 9/6/2013 12:19 AM (GMT 0)
Thanks for your well thought out update. Many here will relate with much of what you said. I am glad that most of the areas of concern post surgery are behind you. I have had both surgery and radiation, and your remarks about the ED/sex side post surgery is a good general warning to anyone considering treatment options.

For me that have long term ED issues, it can be a devastating part of their lives, adjusting to the "new" way, and the methods one has to undergo to even have sex. Even the dry orgasms take some adjustment. Personally, I like the intensity and lengthy of the new orgasms, but nearly 5 years out of surgery, there are times that I still miss the "old" way. Sometimes, it just doesn't seem natural for nothing to come out. In my case, since I don't have a prostate, and since I have an Urostomy and urinate from a hole in my side, its like my penis is more for display only now, lol. It no longer serves
some of its former use.

I hope you continue to do well. I see you were a Gleason 7, so you definitely needed treatment. Whether you should have chanced AS or considered seeds is a very mute point of course now. So don't beat yourself up re-thinking what could have happened or should have happened.

You are dry, and pulling PSA zeros, so from that vantage point, you are doing well.

David in SC
Posted 9/6/2013 12:27 AM (GMT 0)
Hi HCV,

I think you're doing well overall. My first two goals were 1-cure, 2- urinary control. You have both of those. That's a lot to be thankful for in my opinion.

I was lucky with ED as I skipped that step. But even I noticed continued improvements for 2 years straight so don't stop hoping and trying. If all else fails, there are measures you can take.

I'm actually happier now than my pre-cancer days. I think getting cancer and going through what some termed a cure helped me realize how bloody good I have it and how great life can be. It doesn't say much for my attitude pre-cancer, but I think I enjoy this more now.

Sounds like you and your wife have a fantastic relationship, that will help tremendously.
Posted 9/6/2013 11:14 PM (GMT 0)
Thanks for your response guys.  Seem like a lot of people read my post but little feedback. I realize its not what people want to hear but its real and important.  I proceeded with my surgery due to the experience of two of my aquaintances who did well.  I think that prospective patients should hear all sides and outcomes.  I wish I had heard more experiences and opinions at the outset.  DavidG - I do have a good relationship with my wife and maybe I cherish more than  I ever did. 
Posted 9/6/2013 11:33 PM (GMT 0)
HCV -- you've done very well and my life is different too after BT and HT and IGRT but i'm thankful for the treatment I've received and grateful to be alive.  I have never experienced incontinence but I do have to take Cialis to have sex and it is "different" and certainly not better.  the disease and treatment was also hard on my marriage.

would I do it again?

you betcha!

i'm three years past the end of treatment and I gave blood a week ago for a PSA test.  I could have gotten the results the past few days but i'll wait till I see my uro on Monday.  am I concerned?

you betcha cool !

I think the difference between you and me is one day you may be convinced you were overtreated but I will never be. that creeping doubt is because you are alive and well.  can you imagine the conversation if we both failed treatment?

ed

 

Posted 9/7/2013 12:32 AM (GMT 0)
HCV -- I can relate well to your situation. I'm 19 months post RP. The post op pathology report showed 10% of the prostate involved. No margins or lymph nodes involved. I've tested 0's on subsequent PSA's.

I still have incontinence issues and significant penal & abdominal pain. I was being treated for bladder spasms. My urologist referred me to a physiotherapist who specializes in pelvic floor problems and she suspects the pain is caused by pudendal neuralgia. The urologist issued a prescription for gabapentin, a nerve stabilizer this week. Apparently Kegel exercises tend to aggravate the situation and of course I have been doing them regularly up until the last few weeks.

On the ED side, nothing up to this point. I took low dose cialis for 6 months with no effect. My wife abhors the thought of a pump & I haven't brought myself to the point of using needles.

There are days when I wonder "what if", but take some comfort in knowing the cancer has been removed.

I certainly relate to your last paragraph "My advice to the newbies on the board. If you chose surgery - it's a long road to a new life - not a quick return to the old you. Wish I had realized this at the outset."
Posted 9/7/2013 8:43 AM (GMT 0)
We can all relate. I'm dry now, but I still use a thin shield "just in case". I guess it's my security blanket, since I get a little drip here and there if I wait too long to void.

The ED issue is a mixed bag, really. I've been dealing with some degree of ED since I hit 40, so I guess it's not as much an issue for us. We adjusted and my wife says it doesn't really bother her a lot. (I'm good at other things.) She just wants me around and kickin' for a few more years. We really are soul mates and we've weathered a lot. I can honestly say that the pump is interesting and we really don't mind it. I probably could have used one before this. It beats bone pain by a long shot.

I'm no stranger to adversity. I lost my left leg in '78, and I've been stomping around on an above knee prosthesis for quite a few years now. You could say I've learned to adjust to life changes. This PC gig is different, though. I also contemplate my mortality more now, but I think that's normal as we age. This is just more of a kick in the head. I'm more pensive now, but the little things don't irritate me like they used to. They don't matter as much.

At 50-60% involvement, I'm not sorry my prostate is gone. It was no longer my friend. I viewed it as my enemy at that point. Like Dave G, my priorities were to get rid of that rogue gland, be dry, and deal with the rest. My ED is relative, and we'll manage. Still plenty of time to heal. We are thankful for our blessings.
Posted 9/7/2013 3:09 PM (GMT 0)
Since I have not yet had surgery or radiation, I cannot speak to that portion of your post.

I can relate to how Lupron has at least temporarily destroyed a previously strong libido. I can still get an erection, just not as much desire to use it.

The part of the post I wanted to comment on though was the mental aspect. I guess I always knew I was mortal, but having aggressive PCA has taught me more to value the moment, and not sweat the small stuff.

Previously like my fellow Flordians (in my case by way of Midwest and NE) I tended to take sunshine, backyard swimming pool and lanai, and good weather for granted, I no longer take any good fortune for granted.

Thanks for posting. Posts such as yours help those newly diagnosed with PCa particularly the Gleason 6 guys to realize that they have time to evaluate their options carefully before embarking on something that may result in incontinence or ED earlier than necessary.

HCV, in your case though I reinforce what David said. As a Gleason 7 (4+3) rather than (3+4) or Gleason 6, you should not doubt your decision to take action against the beast.

Glad things on balance are going so well for you.

LupronJim
Posted 9/8/2013 12:32 PM (GMT 0)
HCV,

Thanks for the post. So thankful that you're speaking from your heart. As you can see, my PCa was a couple years too late in catching mine!! We all, deal with what we have!!! Everyday, I'm thinking and praying for all my brothers and family here and know it's a hard road to follow.

Just taking it one day at a time.

Take care,

Dave in Bartlett, TN
Posted 9/8/2013 3:37 PM (GMT 0)
Thanks, HCV (and others) for posting. As the wife of a newly diagnosed man, it is good to know all the permutations of post-treatment. Still more tests and consultations but we are leaning towards surgery. Sept 14 marks our 2nd wedding anniversary-- not the gift we were expecting. Looks like we will just be adding to the sex toy collection. . I know we will adjust--we love each other too much not to laugh and roll with all the punches cancer has in store for us.

PSA 147, then 103 a week later
Biopsy, 8 of 12 cores positive, 3 +4, 21% involvement
CT and bone scans inconclusive
Posted 9/8/2013 3:59 PM (GMT 0)
Sorry, new member forgot to add info to profile. Again, thanks all
Posted 9/8/2013 4:02 PM (GMT 0)
Good, honest post. Can't have too many of those. Thanks!
Posted 9/8/2013 4:11 PM (GMT 0)
Haliday,

I started a new thread for folks to say hello to you and offer their suggestions and support.

It is here: www.healingwell.com/community/default.aspx?f=35&m=2846277
Posted 9/8/2013 4:18 PM (GMT 0)
I am now at 2 years 8 months post robotic surgery. I also didn't have much response to ED in the first 12 months which was difficult to come to terms with. The second year was much better and gave me encouragement that I would be fine by the 2 year landmark. That came and went and I still had ED but could at least enjoy sex albeit with a difference. At 2 1/2 years I was starting to reconcile myself to realise that this was as good as it would get. I decided that I would try injections as a last resort. Well I am still waiting for my referral. Then a couple of weeks ago I slipped on my constriction ring and had a surprise. I use a Vacurect pump and have developed the technique of applying the ring first before pumping. Well on this occasion I sensed a natural response building. It wasn't much at first but I had the inclination to persist with manual stimulation. To my surprise and delight I managed to get a 110% erection! My wife was certainly delighted with the result. So after another depressing plateau I have discovered further improvement even past the 2 year mark.

I can now get a full erection using just a constriction ring and significantly one that doesn't need to be too tight. This has also enhanced the pleasure during sex and the orgasms have been great with it. I still hope for even more improvement but if this is as good as it gets then I can live with that!

I have now just ordered a magnetic penis ring which is only 6mm thick. I am hoping this will be even more comfortable for us both. The theory is that the magnets help the blood to flow. I will see when it arrives in a week or so.

www.ebay.co.uk/itm/100-Hand-Made-Silicone-Penis-Ring-Any-of-4-sizes-/110957907872
Posted 9/9/2013 8:41 PM (GMT 0)
HCV, You could not have said it better. I have had many of the same thoughts. I did think a bunch about what treatment to do. I am grateful that I am have stayed in the zero club, that being said I do miss my pre PCA self. I am a different person.

I was not surprised with my DX. I knew that I wanted to live longer and with that I take the consequences. Like you for the most part leak free, Stayed in the zero club, and I certainly think I will remain with drug induces sex.

Thanks for posting. I was not much older than you when I had this thing done.

Peace to you.
Cajun Jeff
Posted 9/10/2013 4:39 AM (GMT 0)
HCV, I showed my husband your post and this thread and he thought it was very interesting. He says he feels a lot like you regarding his situation. He is 10 months out from surgery. He is continent. He has ED, although he has nocturnal erections. Last night he noticed he had one as he was falling asleep. He does not get erections when he is awake, even in response to stimulus. He says that like you, he feels he may never have a spontaneous erection again. My husband is freaked out that he is approaching the one-year mark, and still has ED. For him this upcoming milestone is significant as he was hoping to have overcome ED by that point. I asked him if he could relax about the ED (I wish he would) but he can't. I feel as though there is a constant underlying anxiety in his mind as to whether he will get erections back. He says things are not the same at this point, but you make the best of it.

My husband is not sorry that he had surgery, as his cancer had escaped the prostate in one area, although he had clear margins.

So far his PSA has been undetectable but I am so nervous about his upcoming PSA test at the end of September.
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