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William H lives in Georgia, USA. He was 51 when he was diagnosed on August 13, 2007. His initial PSA was 5.0 ng/ml, his Gleason Score was 6 and he was staged T1c. His choice of treatment was Radical Prostatectomy . Here is his story.

My advice so far to anyone with this diagnosis: Take your time; Talk to as many doctors as you can; read everything you can in the library and on the Internet. Be wary of the newer treatments especially if you are younger than 65. The newer treatments have no long term survival statistics yet and you are 'rolling the dice' with cancer. Also, make sure your biopsy is done by a good urologist and the glass slides are reviewed by at least two pathologists because this determines your options to a large extent.

I would even go a step further and seek out the best prostate cancer centers in your area. Here in the USA, they are Johns Hopkins, Memorial Sloan Kettering and MD Anderson. Mayo Clinic and Duke also have good programs. If you are treated by the best, you will have no second thoughts or regrets in the years to come.

I live in Georgia and travelled to Johns Hopkins. I will be going back to Johns Hopkins in November for an Open Surgery with Dr. Walsh.

 

UPDATED

December 2007

 

 

I had open prostatectomy surgery (non-robotic) at Johns Hopkins (Baltimore, MD, USA) on Oct 14th by Dr. Patrick Walsh. Everything went very well and I was extremely pleased by the doctor, hospital and the staff. My final pathology was good: Gleason 6, organ confined, negative surgical margins, lymph nodes and seminal vesicles. Dr. Walsh saved both nerve bundles but trimmed a little close on one side due to the extent of tumor and its location within the prostate. Even though my cancer was non-palpaple, the biopsy revealed that there was a lot on one side and in the area close to the nerves (where most prostate cancer seems to grow). I have no incontinence issues and have been dry since the day the catheter was removed. As far as sexual function, time will tell. This can take as long as 2 years even with both bundles saved due to the trauma to the nerves.

All in all, I can say this operation was not too bad. I flew up on a Tuesday, had surgery Wednesday, was discharged Friday AM and flew home Sunday afternoon (by myself). I stayed in a hotel in the Baltimore area. When I traveled back home, I used the airport wheelchair thoughout the journey (tipping liberally) and had a limo take me from the airport to my home. I was not an invalid by any means, but the wheelchair helped in dealing with the crowded airports, luggage, etc.. As far as pain, I didn't have any constant pain but it did hurt when I moved (sitting, standing, etc.) and I had a hard time getting comfortable. On a scale of 1 to 10, I would give it a 4. I was moving slowly the first few days but I was alert and awake and functioning. They give you a narcotic pain killer day 1 and day 2 but I asked them to stop giving me that the morning of day 2. They gave me a non-narcotic after that but I don't think I needed it. I took Tylenol for the first 10 days in successively smaller doses. I was constipated the first few days and had little appetite. Milk of Magnesia helped move things along.

The biggest issue I had to deal with was the catheter. It didn't hurt, it just was a nuisance and constant reminder. Sleeping was difficult while the catheter was in because you are forced to sleep on your back on the edge of the bed. As the days went by and the pain diminished, I learned to sleep on my side a little bit but I never really got a good night's sleep. I was up and walking about on the 2nd day and by the 7th day I was walking almost a mile (albeit slowly). I wasn't able to walk much or very fast because of the catheter and irratation from it, but once I got the catheter out, I was immediately able to walk 2+ miles without difficulty. By week 3, I felt normal and felt like I could do my normal routine.

Today, at the four week mark, I am pretty much back to a normal routine. I had been working part time since the beginning of week 2 but pretty much full time after week 2. I was driving a little on day 11 and that was probably as soon as I could have because of the seat belt and the movement getting in/out and the bouncing. They don't want you sitting for more than 1 hour so frequent breaks are in order. I am walking almost five miles now and will venture out for golf today or tomorrow. Not sure I could run, play tennis or lift heavy objects but with Christmas coming up, I can focus on recovery rather than force activities. BTW, my timing on the surgery was excellent. With this being the holiday period, business is slow and I can rest/recover as needed. I don't know if I would want to go through this in the summer with all the activities going on.

I have a lot of tips for anyone going through this surgery: In particular dealing with the catheter, going to the bathroom, etc.., and if you write me, I will let you know how I coped with this on a daily basis.

I would strongly recommend anyone with prostate cancer to read Dr. Walsh's books as the starting point of your research. I am convinced he is the best surgeon in the world for this operation - I feel very fortunate to have had him as my doctor. His books are available in most libraries and bookstores.

Good luck everyone - My next update will be in about 2 months after my next PSA test.

 

UPDATED

March 2008

 

 

I had my 3 month post surgery PSA test and was very pleased to learn that it was undetectable (<.05). This was of course great news but I'm still not out of the woods as with all cancers, you never know until years later. What it means is that they probably got it all and no other treatments are required at this point. There is always the risk that some microscopic cell is loose in there and could grow to be a problem at some point.

I am not wearing any pads and I pretty much feel like I did before surgery with respect to continence - No problems there. With respect to ED, I am able to perform with the help of Levitra but it requires some patience - It is not as spontaneous as before but I figure it will improve with time - That is what Dr. Walsh is telling me so I will go with that.

I have no other issues - The scar is healing and is not a pinkish color. The hair has grown back and it is very hard to see it.

I will update again in a few months. I believe I have to have another PSA at the 6 month mark but if not I will update whenever I am required to have it done. Good luck and remember: The surgery is probably the least inconvenient solution out there and the best way of knowing the extent of the tumor. ALL treatment methods carry some risk of incontinence and impotence - Don't let anyone tell you otherwise. Get the best doctor that you can afford if these issues are important.

 

UPDATED

December 2008

 

 

Well, it has been one year now since I had my surgery and I thought I would provide an update. My PSA remains undetectable. I have no incontinence issues at all - I would say I am pretty much as I was before the surgery in this respect.

With respect to ED, with the help of Levitra I am almost back to where I was before surgery. I say almost because things seem to be slowly but surely evolving in the right direction here. Erections are no longer as spontaneous as before but Dr. Walsh tells me this too will improve with time. The main consideration here is that I can get a full erection that is pretty much as it was before so the functionality remains; It is just not as easy to get it there nor does it get there as quickly. In other words, the nerves were spared so there is no reason physically that would prevent it. But the nerves were jostled and it takes time for that to heal. Also, there is a component that is missing: The psychogenic response. I cannot say this will fully ever come back but Dr. Walsh tells me it will.

All in all I have no regrets. At my age, the way I looked at this going in was that had I done nothing the cancer would have progressed and I would have been impotent at some point anyway and if I was dead I couldn't have sex either. Radiation and HIFU were really not alternatives due to side effects and long term results doubt. Radiation will render impotence in almost all people eventually anyway. The robotic surgery was interesting but the long term results remain unknown. And believe me, the open surgery really wasn't that bad. So far, I am batting three for three: cancer free, no incontinence and I'm still able to achieve an erection just as before surgery. I am convinced that you need to do your research and pick the right doctor and preferably one from a major university hospital or cancer center that is ranked very high for this type of cancer.

 

UPDATED

June 2010

 

 

There has not been any change in my condition since my last post. PSA still remains undetectable and no incontinence issues whatsoever - not even any "stress" incontinence (laughing, sneezing, working out, etc..).

Some minimal ED issues but Cialis and Levitra help and this is getting better with time. The nerves can take years to heal and I am still seeing slow but positive progress in this area.

 

UPDATED

May 2011

 

 

Sexual function still continues to improve even now after almost four full years. Can perform without Levitra or Cialis but it is better with a little help. I buy the 20mg tabs and cut them into quarters effectively taking 5 mg at a time and I am pretty much back to normal function before surgery. It is different but erections are very full and strong and can maintain one without difficulty.

I still don't have the psychogenic function back yet so my libido isn't quite what it was but manual stimulation works to get that going. I am extremely thankful that I chose the treatment method I did and with the surgeon (Dr. Patrick Walsh @ Johns Hopkins).

I will also add that there are benefits to having your prostate removed. Primarily: I no longer have to get up 3-5 times per night to go to the bathroom. I may have to get up one time depending on how deeply I sleep. As a secondary benefit, the lack of worrying about getting my partner pregnant.

William's e-mail address is: sigmaindgrp*msn.com (substitute @ for *)