Welcome new friend- FLABeachgal

In another thread, she posted for the first time. She said:

.......the stage that my husband (age 65 at diagnosis) and I were in this time last year. Hubby had a gleason 6 with 2 positive cores and a small palpable nodule. In addition to our local urologist, we consulted with the head of GU oncology at Moffitt Cancer Center in Tampa and with a nearby radiation oncology group that could provide seeds or CyberKnife procedures.

All along the way we were told that his cancer was small and slow growing, and that we could take our time (up to 5 years) to decide upon a course of treatment. After seeds and the CyberKnife treatment were ruled out due to his "unique" anatomy (born with only 1 kidney and a large bladder diverticulum), he decided to have surgery. His local urologist recommended Dr. Patel at the Global Robotics Institute. Hubby had his robotic radical prostatectomy in November of last year. The good news was that he did very well and regained his continence almost as soon as his catheter was removed. The bad news is that his cancer turned out to be much worse than everyone had believed - Gleason 5+3=8, positive margins, extraprostatic extension, perineural invasion.

Dr. Patel and his staff have been absolutely wonderful. The care at both his office and the hospital has been outstanding. I'm a retired nurse and kept an eagle eye on everything that was said and done to him throughout our journey up to this point, and I can only echo the remarks made by a previous poster about her and her husband's experience.

Dr. Patel spends time with us, talks to us in terms we can understand, is honest and up front about the possibility of a recurrance due to the aggressive nature of hubby's cancer. We've had two followup visits so far at 6 weeks and 3 months post-op, and so far his PSA's have been undetectable! We go back again in June for another check. Dr. Patel told us that if the PSA goes up at all, hubby will need to have radiation therapy, and also that there is a good chance that it will. We're learning to live from PSA test to PSA test, and it will be that way for years to come.

Best wishes to you both as you begin this journey!

Welcome to the forum, glad you're here, sorry for the reason.

Welcome to the site.

Hi FLBeachgal,

Welcome to our little corner of the world. Sorry that you have to be here, but glad that you found us. Also glad to hear that hubby is doing so well thus far. I'm hoping for many more of those good PSA test results for him and all of us.

All the best to you.

Magaboo

Goodlife,
Having any treatment, be it surgery or radiation without knowing the full extent of your cancer is like closing the barn door after the horse has escaped. A lot of doctors and patients believe that surgery is the only way to get a good handle on your disease. It may be, but the cost is too great and it's after the fact. There are much better ways to stage PC without the affects of surgical removal. PAP, PCA3, Ploidy analysis, algrithims that correlate gleason, psa, core samles and tumor size, color doppler or MRIS. All these combined are less than the cost of a CT and bone scan. Proper staging is also an art that few doctors are capable of.
There are certain things I want to know BEFORE anyone starts cutting on me:
1. Is my gleason grade correct.
2. The exact size and location of my tumor or tumors. (50% of all positive margins are in the Apex)
3. Is there indication of micro mets or lymphnode involvement.
4. Is there extra capusular extension.
All these can be reasonable determined without surgery. Then one can make an informed decision using partin tables and PC tools to arrive at the best treatment for the best probable outcome.
JohnT

Hi rhb47,

Responding to your question about the length of time between diagnosis and surgery.....diagnosis was a year ago, March 2009.  Surgery was Thanksgiving week this past November.  The time between initial consultation with Dr. Patel and the surgery was about 3 months.

In hindsight, we think that the initial biopsy of 12 cores did not include samples from the very small palpable nodule he had, since the 2 postive cores were on the other side of the prostate. 

In the middle of all the consultations and trying to decide what to do, I had to have unplanned major surgery last summer that set us back about 6-8 weeks in hubby's treatment decision-making.  Had that not happened, he might have been able to have his surgery a few weeks earlier.

Goodlife,
I have to agree with you. I think it depends more on the doctor you get. My 1st 5 doctors were supposedly PC experts, but none of them were aware of, or recommended futher staging tests. My last two doctors, Scholtz and Bahn, ran my data into their computer program and it told them that my original staging was wrong and they had to look futher. These tools are readily available on the PCRI website for any doctor to use. All the test that I mentioned are also readily available, but few doctors use them, but they continue to order worthless CT and bone scans for low psa patients.
The problem is that doctor's are using established protocols and don't think past these protocols and don't realize these protocols don't fit all patients. This is why we are seeing a high rate of reoccurance.
These protocols may work for the majority of patients, but most doctors just can't distinguish when something just doesn't fit and need more information to make a good recommendation. The old adage is that if you only have a hammer then every problem is a nail. If you only have a scaple then every problem requires surgery.
A golfing budy of mine just had surgery for a G6 and it turned out to be a G9 not contained. This was a big surprise. I know beyond all doubt that Dr Scholtz would have caught this. This is the difference in knowledge and protocols used. There are staging protocols that work, they just aren't being used.
JohnT