Just found this site about a month ago, wish I had found it in September 06 when I was diagnosed. Here is my long story.
I had my prostate checked for the last 10 years by urologist with DRE and PSA. Never new exactly what PSA was, he just said numbers were good.
In September 05 I had a case of prostatitus and went to local Dr. as it was bothering me enough that I didn't want to wait for a week to get in to see urologist. He said it was firm on the right side and he gave me Cipro and since I was scheduled for my yearly appt. with urologist if 2 weeks to let him check the prostate condition.
The urologist did not mention the firmness so I just chalked it up to the prostatitus I had for 2 weeks, according to urologist DRE and PSA was normal.
In September 06 during my yearly prostate check up the urologist said he felt a nodule and the psa was 4.7 which was above the magical number of 4.
biopsy revealed what he thought, cancer on the right side, gleason 7, no perineural invasion noted. I asked the urologist my psa the last few years, and he told me 2003-1.8, 2004-2.8, 2005-3.5, 2006-4.7, and as I have read and learned later during my research, the urologist evidently had never heard of psa velositiy as this rise over a year was a good indication of cancer.
He refers all his cancer patients to Emory in Atlanta, but the soonest they could get me in was December 3rd and this was October. I was scheduled to see Dr. Fray Marshall, head of urology and formerly of Johns Hopkins.
A friend of mine suggested a leading urologist in Atlanta, he is mentioned in Scardinos book and men fly in from all over the country for surgery. I saw him in 2 weeks. After talking with my wife and I for a few min, he did an exam, after my wife came back in he told me, I don't know how to tell you this, but you are not a candidate for surgery as your cancer has escaped the capsule and I can feel the nodule and it and your prostate is very hard. He said he would love to do surgery, that is how he makes his $$, but it would do me no good, I would have POSITIVE MARGINS and all he could do is hormone T. and radiation, he said prognosis is 5 years. He said my urologist missed the DRE and Psa over the last 3 years as this cancer has been growing for about 3-4 years and with my rise in psa over the last 3 years a biopsy should have been done 2 years earlier
He said if it was him, he would get another opinion and said that if it was him he would go see a friend of his, Dr. Jerome Ritchie, head of urology,
Dana Farber Cancer institute, Havard Medical in Boston. So we made appt and saw 3 drs, medical and radiation oncologists and Ritchie. Radiation and and medical oncologist (Sartor) agreed with Atlanta surgeon, no surgery as it had escaped and they felt in was also in seminal vesicals, they talked to the surgeon and by the time I saw him, he didn't even bother to examine me, he said they don't do surgery on men in my condition, Sartor said prognosis was 5 years. Needless to say it was a long flight back to GA.
We saw Marshall at Emory and he agreed that it had escaped the prostate but he would do surgery. so here was my pickle, 2 leading surgeons and one leading oncologist say no surgery and it could do more harm than good as surgeon my cut through cancer cells in removing prostate and spread it even more.
I didn't make up my mine for sure until I was on the pre-op table at Emory and had agonzized and prayed over this delimma for weeks. My surgery was 1st scheduled for 14 February but I asked to be put on a cancellation list, well in a couple days they called and said they had 2 cancellations on December 13 becasue they didn't want to have surgery on the #13, Marshall only does 2 surgeries per day, Monday and Wednesday.
After surgery I waited for the final path report, had surgery on 13 December didn't get letter from Marshall until 3 January. Don't have all the #s with me as we are now on vacation, but here is what I rembember: NEGATIVE MARGINS,NO SEMINAL VESICLE cancer noted, gleason 3+4, cancer on both sides instead of just one as biopsy noted, 40% of gland cancerous, mulitfocal perineural invasion noted, needless to say my wife and I cried over the fact that is said negative margins. but the perineural invasion does concern me, because if the original biopsy would have shown that then Marshall wouldn't have done the nerve sparing on the left side.
We still had another test to go and that was the 3 mos psa test, it came back <0.04, another relief, 6 mos psa in next week and as with most we be sweating another one, but I am satisfied so far since I was twice given 5 years. Incontinence only lasted 2 weeks after catheter removal so I was blessed with not having to go through that. I friend of mine who is the same age as me, 55, had incontinence for 6 months. A lot of prayers on my behalf by my church and community have been heard and answered
I just pray that my urologist failure to detect and realize about psa velosity doesn't makes that 5 years come true.
thank you for listening
Ron in Georgia