YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

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Gabe G and Pat live in New York, USA. He was 48 when he was diagnosed on January 15, 2009. His initial PSA was 6.6 ng/ml, his Gleason Score was 4+3=7 and he was staged T1c. His choice of treatment was robotic prostatectomy. Here is his story.

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.

Thanks.

 

UPDATED

November 2009

 

 

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.

 

UPDATED

February 2011

 

 

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.

Gabe's e-mail address is: gbg1960@yahoo.com