I have no family history of cancer and am under 50 years of age, so even my urologist seemed surprised that I had 2 positive cores out of 12 with a Gleason 7(4+3) in 30% of one and a 6 (3+3) in less than 2% of the other. Despite the shock and fear of the diagnosis itself, I never doubted that a robotic prostatectomy was the way I had to go given my age and the Gleason.
I had read that surgeon skill was critical for outcomes, so we chose Ash Tewari of Cornell who, in my mind, is one of the top robotic prostatectomy surgeons in the world. This assessment has been confirmed many times over by many people and my outcomes so far. I would recommend him without hesitation to anyone as he is a Master of this procedure who teaches other surgeons who have "only" done hundreds while he has done thousands. Choosing the best surgeon possible cannot be emphasized enough!
This journey was a nightmare rollercoaster, with thinking every bone pain was doom to panic upon taking the bone and CT scans hoping they would be negative (thank God they were) to tough days of depression and wondering why and how.
Tewari has all of his patients get an endorectal MRI which showed no extracapsular extension (good for nerve sparing). Surgery performed the day before St Pat's this year and Tewari's skill showed through with no blood in catheter and quick removal of JP drainage bag. Worse part was definitely the gas that is put into your abdomen for robotic. Very painful for 1-2 days. You need to walk as much as possible despite pain to get over the pain faster. I know people who jumped in bed and this is definitely not the thing to do...only makes it worse in the long-run. Wearing catheter for a week not as bad as I thought it would be but walking 3 miles while wearing it was not fun.
One of the reasons we chose Tewari was his new catheterless procedure whereby tube is placed above your pubic area thus avoiding the penis part and being much more comfortable. I lost 16 pounds to get this but unfortunately it is Tewari's call at surgery and he opted not to do it. Anyway, it is an added possibility with this fine surgeon. From what I have heard, penile catheter discomfort can sometimes be a function of poorly chosen catheter size. I know people who had terrible experiences with too large a catheter for them while mine was not that bad. Certainly something to look into.
Just got final pathology report showing clear margins, negative lymphatic nodes and seminal vesicles so could not ask for more. Surgeon skill definitely helped in continence as about 40% of my daily urine volume comes out when I go and not otherwise. Hope to get "dry" within a month if not 2 weeks.
Now question of PSA readings every 3 months for 2 years (due to 7 Gleason) and then every 6 months for 1 year etc. Hope this nightmare is finally over and would like to work as a counsellor at Cornell for Tewari and associates given my counselling studies and personal experience with this tough event. Overall, thankful that this thing has made me closer to God and my wife and helped me appreciate what is really important. Look forward to family group hugs with my two daughters and wife and now when I look into my wife's eyes I see the most important person in my world which perhaps I had forgotten to appreciate in a while. Will gladly answer any questions or concerns as best I can and hope to provide updates as they come. This site helped me cope and I hope I can contribute the same for others.
It is now nearly 9 months since my robotic procedure, and I have been blessed with two PSAs of .01. My next blood test will be in early January so I will keep my fingers crossed. I chose this procedure because of my age and the Gleason of 7 and I wanted to just take the cancer completely out.
On the sexual side, I am taking Trimix injections to keep the penis tissues in shape. They say that at about 2 years whatever I have is what I will always have and it won't get much better than that. Right now it is pretty bad. I can only get an erection with the shots although the organ does get more full after Viagra. Found out I probably have an inguinal hernia so I will need an operation for that which stinks. [Inguinal hernia appears to be a fairly common, but under-reported, side effect of surgery].
I would recommend Dr. David Samadi of Mt Sinai over the doctor who did my procedure, Ash Tewari. My experiences with Tewari are that he is a master of the operation itself but is so fixated on his numbers and results that he is very careless on the sexual side. He completed my procedure in 90 minutes! I often worry that he just wiped out all or most of my nerves in his haste to get his 4 operations in one day done.
At this point, I will just have to wait. I will update when helpful.
Nearly two years since robotic. Thank God PSA has been insignificant.
Pretty much impotent however. Can have orgasm lying down but when standing will pee with orgasm [this is known as Climacturia] and penis gets more full, although nothing that I would call hard like before. Very loving and understanding wife so we have adapted as needed. We chose robotic because my wife is a nurse and felt that getting the cancer totally out is what matters, which I agree. Obviously had to accept and now deal with the impotence. Continence returned after a few months. Glad I chose robotic.
Although I am grateful to Dr Tewari, the surgeon I chose, because he removed the cancer, I wonder if I would have done better with Dr Samadi. Both are well known, but I wonder if Dr Tewari rushes his surgery procedures - he did four in a row the day he undertook my surgery and did mine in 90 minutes. Was it this haste that has left me with my erectile problems? I'll never know.
Tried injections with Mulhall of Sloan Kettering, but results not great and I ended up with Peyronies Disease. I think it was caused by injections. The doctor never mentioned that this was a possibility and later brushed it off saying no causation, but I disagree as area where injections done was were disease started. I have not treated Peyronies as I want to move on with what I have and stop torturing my penis any more.
Will be happy to answer any questions just email me.
It has been 3 years since my surgery. How time flies! Sometimes it seems like yesterday and other times like 1 million years ago. I chose robotic surgery because my wife and I agreed that getting the whole organ out asap was the way to go, regardless of any sides. The incontinence lasted a few months but cleared up quickly with the help of a medicine which was prescribed. Potency, however, has only gotten slightly better and it is clear that my nerves were mostly not spared, regardless of the story the surgeon told us (which he tells everyone). Have resigned ourselves to the idea that it will never be the same or near the same again in that department, and now just thankful for undetectable PSAs so far. Will be more than happy to provide info, support, and an ear to anyone who is afraid or newly diagnosed as I have a counseling degree and want to put it to use. Be brave, and have faith, and know that you are truly not alone.
Thank God, it appears PSA still undetectable 4 years out. Mostly impotent, however,and can perform somewhat with Viagra although I would say about 15% worth. Blessed with understanding wife who is a nurse and loves me. She has explained to me that surgeon probably went too far on nerves but that he was likely freaked out because, apparently, my prostate was huge and the biopsy made the cancer appear more spread out than it really was. Thankful for life and relative health. I chose robotic because, at my relatively young age, many told me that was the only reasonable and sensible option. Despite the side effects, I am glad I did as I would not want to spend the rest of my life looking over my shoulder on this one. I will be glad to connect with anyone who is interested. My doctor was Tewari at Cornell, who is an expert at removing the CA but not too concerned with keeping your erections ok. Take care.
Just passed the five year mark. Still have undetectable PSA as far as I know, and definitely still have, and likely will always have, impotence as a result. No doubts regarding surgery as the right path for me given my age and diagnosis, but not sure I chose the right doctor. As I have said many times, Tewari is excellent as far as cancer removal, but pathetic as far as impotence and bedside manner is concerned. What is done is done, and moving forward thankful for current status. I will be glad, as always, to answer any questions and concerns, so just ask. Take care and whatever you choose, have faith and be as positive as possible.
Hard to believe that it has now been I think 6 years since my treatment. Last reading was still 0 Thank God but looks like impotence is here to stay. Well, important thing is that I am alive and sharing life with my two beautiful daughters and amazing (plus equally beautiful) wife. We just celebrated 25 years of marriage and thankful for it. My original treatment was robotic surgery and I chose this because I was so young at diagnosis and wanted everything out. Do not regret the choice and accept the collateral damage. Will be glad to discuss and give advice if asked. Hope you guys stay strong and hug your loved ones and kick this thing out of your lives forever. Take care and God Bless.
Hi, sorry for not updating sooner but life keeps us all busy, which is good news because it means we have life to begin with. No change in my impotence or PSA levels, which is the ultimate bad news good news story. Someone who had the surgery with my surgeon Tewari emailed me a while ago wondering if I was ungrateful with him considering he had apparently cleared out our cancer. All of this because I have stated that I would have gone with another surgeon if I had to do it over.
I explained to him and here again that I am grateful for Tewari's surgical skill. What I am not grateful for, however, is that he lied to me repeatedly telling me that he had done nerve sparing when that was clearly not the case. I could tell from my few interactions with him after the surgery that once he operates on you, you become another statistic and outcome. He should have been honest with me from the first moment which, although tough to take, would have at least been honest. I still believe that his rush to complete the surgery in less than 2 hours contributed to his decision to not do nerve sparing. I have friends who had surgery with far less prominent doctors who took 5 or more hours to do the surgery and have better sexual results. Those friends also had the same or worse PSA etc than I did. Look, hopefully, for the last time, I am grateful for Tewari's surgical skill in removing the cancer. To say anything positive beyond that is neither necessary nor accurate.
Now I am just grateful for being cancer free for so long and looking forward to one day celebrating ten years hopefully. I thank God for all His blessings and will be happy to discuss anything you want to know about this experience etc. Take care and keep the faith.
Cannot believe it is now going towards 9 years since I was first diagnosed. Sometimes it feels like a distant memory/nightmare and sometimes it feels like it was yesterday. My wife and I chose surgery because her being a health professional and given my age it was the safest route to take. I was only 48 when diagnosed. As I have said before, we chose Dr. Tewari at Cornell who apparently did a great job on the cancer. I am thankful for that but again, what I did not like about him was that he lied to me about the nerve sparing, of which he did zero. He told me that he had done some nerve sparing but I soon realized that he says this to everyone. If I had to do it again, I would have chosen Dr. Salmadi who might be nearly as good as Tewari if not the same and appears to be much more sensitive and considerate on the sexual potency side. In any event, we are happy that my numbers are nil thanks to God and have learned to deal with the rest.
Someone recently asked me if I would have done CyberKnife if that existed or was at the development stage it is now back then, and I do not know. They claim to have less side effects but my wife says that the long term success of that treatment is still not longitudinal enough to be reliable. The bottom line is you review all of the treatments available when you are diagnosed and compare those with your goals and expectations. Ultimately, you have to choose one so you go with your instinct and do not look back. Treatment chosen is as personal as it gets so do not let others push you around but make your own choice.
Above all, have faith and be thankful for the support from above and from loved ones. Anyone with questions or concerns can email me as I have always responded fairly quickly. Take care and good luck with your path.
Gabe's e-mail address is: gbg1960 AT yahoo.com (replace "AT" with "@")