Hello all, I am today doing my final choice on treatment after about eight weeks of contemplating and searching for info. My story starts one year ago when I was diagnosed with arthrosis in my right hip and had a very successful hip-replacement. One year later I had the same pain in my left hip and took contact with my doctor. She confirmed that I had arthrosis in the left hip also and sent me for the standard blood tests needed to start the surgery process. A week later she called and said I had a strange kidney reading and I had to do more tests. A week later she called again and told me the kidney value was normal again (this can happen if you are mildly dehydrated when the test is done) but that she had also tested my PSA which was not so good (5.8 with a free PSA quota of 11%). I already had seen this since we have access to our medical journals on-line where I live so I was not so shocked. (When I saw it on-line I cried like a baby...). She said I needed a DRE and two days later she performed that first in a line of humiliating experiences. She asked me "Have I ever felt your prostate before? You probably would have remembered that..." Well she felt nothing strange and send me to a specialist urologist.
Three weeks later I had a biopsy, twelve shots where 2 are saved for some science project. Very experienced doctor (I checked on-line) and apart from the degrading goodbye standing with your pants down in a room with two nurses and a medical student (all young women) it went fine. It is not every day a young woman says "here is some paper to wipe your butt and here is your diaper!" to you.
In the car home I broke down in an anxiety attack and my wife had to stop the car to let me puke. This is really the first time I realised I probably have cancer.
Two weeks later (Nov 21 2014) a new visit to the urologist and the biopsy showed cancer in eight of ten shots, Gleason 3+3 in six and 3+4 in two. That was not so good. The urologist said that it is curable and although big the tumour is contained in the prostate and I could have surgery, however he is not so optimistic on nerve-sparing since basically my whole prostate is cancerous. He suggested I had a new meeting with an urologist and an oncologist at the same time to discuss treatments and side-effects, I gladly agreed to that. Strangely my strongest memory from this gloomy meeting is that also in this meeting a medical student attended, a young, thin, bleak girl of maybe 23 years, probably there to witness how bad news is to be delivered. She shook hands with me and my wife and her hands where drenched in sweat and icy cold. She must have been very nervous...
A week later (Nov 28 2014) we had the joint meeting with an urologist and an oncologist (both senior and both ladies) and this was something I really can recommend if you are getting the opportunity, we could ask all questions we had and have them answered from bot surgical and radiation perspective. Both doctors told me that they can cure me and that I will be fine.
So today (Dec 1 2014) I sit at my kitchen table and have decided to go for surgery. I will call tomorrow and get a date for this. What made me make this choice is that it just feels better and that given the size of my tumour I want to have a detailed analysis of it to be sure of the diagnosis. I know that ED will be an issue with me since nerve-sparing will be hard and a risk but my surgeon have made a second look and is willing to give it a try without given that it looks low risk which he will see in surgery. The ladies which we had the choice discussion with gave me about the same odds of incontinence and ED, mostly since if I were to choose radiation they would perform both external beam AND brachytherapy so my nerves would be fried here also.
I have a very understanding wife and we have discussed this and we both agree on surgery and if ED is bad we will go for injections. None of the doctors I have spoken to gives much hope on Viagra.
Surgery will probably take place in January so basically I will give my wife a hard (pun unintended) time from today until new-year and then live on the memories. I will keep you all updated.
Hello again, I have now received a date for surgery which is Jan 7th (or 8th they are still doing the Christmas planning). This is not much of an update but just to say that I have no real second thoughts and my advice to those of you struggling with what treatment to choose is to listen to your gut and your (if applicable) wife, and then go for it.
Merry Christmas to all of you.
Had a bumpy road and came home today after 6 days in hospital. Surgery went well, no issues with bladder spasm and in the wake-up I felt fine, slight leakage from the catheter but a young nurse rapidly washed my boys and I was fine. The surgeon spared the nerves on one side and partly on the other side but given the size of the tumor he was happy. There was a small leak in the suture so I had to have a drain in place. The most remarkable memory was the handwritten note taped on the daVinci robot saying "Do not unplug, batteries will drain!" (True!)
However the drain added one day in hospital to check that leakage stopped. But then came the hard part, I bloated severely, my digestive system shut down.
Day three I looked pregnant and started vomiting and where given morphine against the pain in the bladder area where gas probably pressed the bruised areas. The drain was removed which did not hurt but felt straight unnatural.
Day four a minor fart and more vomiting. Nurses actually at one point said "we can see that you are in such pain that you should take more morphine". No BM but clear fluid. I did walk around as much as possible, I did take laxatives.
Day five monumental fart happened after actual doing toe-touches in bathroom and pain stopped however the doctors said that evenso the swelling was so big that if it did not go down I would need an x-ray of my abdomen. However on day five things continued to get out of me and in the evening yesterday I could eat and basically feel ok. Then I also realized that the pain from the surgery as such was very minor.
And day six I was released.
I recognize the stomach issues from my hip replacement and I believe that this is a side effect of surgery that now and then can happen but with a prostate removal you worry more because the pain is in the same area.
So here I sit and watch TV with a bag at my leg and a pregnant stomach but feeling ok.
Today it is 10 days since the catheter came out. It really was not painful but felt weird. Afterwards I was pretty continent but leaked when getting up and basically at every unplanned physical event (farts, sneezes, getting out of car, etc.) But today the leaking is nery small and I am fine with a small shield. ED is still there but I did not expect anything else. I have 5mg of Cialis daily and it gives some effect but basically only keeping the shrinkage we all fear at bay. It is almost a month since surgery and I am 90% back to normal. Just happy to be on track towards no leaking. Next milestone is the path-report which comes any day now.
Today it is almost exactly 3 months since my surgery. I never had big issues with incontinence and was almost dry after 5 weeks. Now it is only very small drops leaking at unusual movements or sudden laughter. As my wife says "you are as continent as any woman". ED is still an issue, I am on 5 mg Cialis daily and have tried Bondil (Muse) alprostadil inserts which only provides some "fullness" but nothing useful.
My surgery was quite successful with nerves spared and the cancer contained in the prostate, nothing outside. I did have small positive margins but that is according to my surgeon "nothing to care about". And with PSA <0.1 I feel cured even if things still may change.
The ED is not such a big problem as expected since only three months have passed, I hope it will get better with time and that the magic pills will start to work. It is however making me slightly depressed. It is a common view that we who have had a successful surgery should all of a sudden be happy that we are alive, (which is true compared to the alternative) but on the other hand if we were given incontinence and ED for other reasons we certainly would not be considered "lucky". This annoys me a little.
But all in all I am fine and am grateful for my very skilled surgeons work. Things could have been worse.
It is now 16 months since I did my surgery. I am still at a <0.1 PSA which is considered undetectable. I had a very smooth journey when it comes to incontinence, it is today almost 100%, a small drop when I stretch or move in certain ways but very seldom now. On ED it took almost a year to get back to almost normal. I now and then have a morning erection which is a good sign and it works well with Viagra.
I really have no regrets on treatment choice, compared to my hip replacement this was not bad at all. And it feels really good to have it out and to have the detailed pathology. I have almost stopped worrying about recurrence but it is still there now and then. I guess it is true that cancer changes you a bit when it comes to how you view life and family but I feel fine.
I wish all of you who have this ahead of you Good Luck and remember that a year moves on very quickly.
Hello, just had my 2 year PSA (25 months to be correct) and it was undetectable, <0.05. After two years I am as good as new, I have no urine leaks but occasional drops when I am tired or drunk. I still do Kegels every third day and it seems to work. On ED I am pretty much back, I use Viagra but I think it is mostly in my head.
Some ask me if I feel cured? and I cannot say I do, I am still nervous for the PSA-tests and I still worry that it will come back. But it does not affect my life very much and I can live with it. I realise that my surgeon is very skilled and that I have him to thank for a lot. I know that many are not as fortunate on incontinence and ED so my advice for anybody doing the surgery is to try to get a skilled surgeon. I think that is very important.
I will call in again in October.
Hello again, 3-1/2 years since I had my prostate removed. PSA has been stable <0.1 but then my hospital changed method and started using 0.05 as limit for undetectable and unfortunately I am exactly at 0.05, not <0.05.
This may mean nothing but it may also mean that there is cancer left, however if so very slow growing. I will continue checking PSA every 6 months until 2020 and we will see what happens. Next measurement in August.
I do not regret choosing surgery, the side-effects have been limted even if ED took a long time to go away. Hopefully next PSA-test will be <0.05.
Good luck to all of you
Hello guys, time flies, 4 years since surgery and I am fine. No incontinence (well if I sneeze while drunk...but that was probably so before also) and no ED. But ED took 3 years to battle. My PSA wiggles around 0.05 but I am not that concerned. We will see what happens.
But final message to you guys: surgery may be a risk but some of us come out of it without any scars worth mentioning. Good luck guys.
Well time flies, it is 5 and a half year since my surgery and all is almost well. No side effects worth mentioning, slight small incontinence when I lift heavy or make a very strange move but honestly I cannot say that this would not occur anyway. It is very seldom. I still now and then do my Kegel-excercises, that may help. On ED pretty much the same, it works fine but certainly not as when I was young but who knows what it would have been like anyway.
Less good is that my PSA is slooowly rising, still under 0.1 but rising. I will take the next one in August and if higher than 0.1 I guess I am in for radiation. My doctor advises to be calm since we are talking about very long doubling times it may never become an issue. We will see.
Best of luck to all of You
JW
Hello again. My PSA continued to rise to 0.2 so now I will do salvage radiation this autumn. It starts on tuesday Nov 9 and will go on until christmas. In total 70 gy. I also had a pet-scan and nothing could be seen on it which is good since it probably is only in the prostate bed that the cancer has reoccured. We will see later.
Good Luck to all of you
Well time flies, 2 years ago I had follow up radiation ttreatment since the PSA slowly crept up. I had 70GY in 35 sessions. The treatment was not very troublesome apart from a very upset stomach. My stomach or bowels are still affected and I have to be very close to a bathroom between 07.00 and 09.00 in the morning. I also have minor bleeding in the bowel but nothing serious.
PSA is still unmeasurable <0.1 so basically I am fine. I hope it never comes back. It is now measured every 6 months and that will continue for at least ten years.
Good luck to all of you
J's e-mail address is: jonas.r.wilde AT gmail.com (replace "AT" with "@")
