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Experience at Hopkins (VENTING)

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Prostate Cancer
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Posted 11/1/2009 2:31 PM (GMT -7)
Orig. scheduled for rp on 2/20/09 at 3pm. After spending 7hrs in the pre op area was informed they couldn't fit me in. Surgeon kept me overnight to Saturday but released me with apologies explaining he was unable to get a team together. Returned 0n 2/24,after a second bowel prep, what fun! Surgery was completed. Turned out the surgeon was leaving on a trip for two weeks. I was left in the post op care of residents. At that point I felt  I became a number rather than a patient. One resident said I was dehydrated and promptly pumped fluids in me until I swelled up, another said I was not dehydrated. They kept me over an extra night due to my pelvic drains filling up with a straw colored fluid that appeared to be urine. When the physicians assistant saw that he said I might have a leak at the connection. At that point I questioned my sanity on agreeing to come back. The #1 hospital, not so sure.

Gleason 6

pt3a-organ confined throughout

tumor extent-moderate

extraprostatic extension

summary margins positive millimeters in length (0.1),right, apex, posterior, focal

note indicates apical margin on the specimen focally positive, however, all additional tissues taken from this area are negative for tumor, indicating that the true surigical margin is "most likely negative"

lymph nodes negative

seminal vesicle negative

First two psa results May & Sept undetectable

The surgeon is telling me not to be shocked if the cancer returns in 2/3 years

Main question: Can one or two of you well informed friends out there make some sense of my path report? Organ confined but positive margins?

 

Posted 11/1/2009 3:04 PM (GMT -7)
fjgolf,

That is a terrible hospital experience, I would have been rasing holy h*** about that. I sometimes wonder myself, if the "big name" surgeons and the "big name" hospitals really add any value to our journeys. Unless you lived in Upstate SC, you would have no reason to have heard of any of my doctors or the hospital I go to for surgeries.

My pathology was organ confined, and one minute positive margin. Unfortunately, the one margin started the PC off again, and thus I am in the middle of Salvage Radiation.

Good luck to you.
Posted 11/1/2009 3:16 PM (GMT -7)
What an awful experience.  Goes to show you that being at the #1 hospital is no guarantee when it comes to an individual experience.  I hope you complained to whomever they have as a patient advocate, ombudsman, etc.  The hospital I used called me a few days after my surgery for a survey about my experience, and I told them both the positive and the negative (mainly positive).  I wonder if Hopkins does this, or if they feel they are too famous to bother with patient feedback?

As far as your pathology, that's a strange one.  Don't know how it can be organ confined and still have positive margins, unless the surgeon left some of the border of the organ behind, that is, didn't cut enough of the peripheral tissue.  Hopefully it won't matter, from these boards there are many who had a positive margin but the PSA went to 0, so I hope that is your case.

I have a strange pathology report also, with negative margins, extracapsular extension, but no extraprostatic extension.  Go figure that one.  I have my first PSA this week, so it becomes a moot point once I get my PSA, but it makes me wonder what's going on.

Posted 11/1/2009 3:21 PM (GMT -7)
That's awful. I'm so sorry.
Posted 11/1/2009 3:56 PM (GMT -7)
Hi fjgolf,

I'm so sorry your experience was so bad. It's bad enough that we have to go through the surgery and side effects of PC.

I had a pleasant experience at a small hospital. It started as I entered the facility and wasn't sure which way to go for admitting. A hospital employee who was going in the opposite direction sensed my confusion and without my asking, took me to admitting. The rest of my stay with all of the staff was similar. I was almost disappointed when I was discharged.

Even now when I go back to the Uro's office for my checkups the experience with all personnel couldn't be better. The receptionist is pleasant and helpful with any forms that need filling out. The nurse is very pleasant and remembers me even after a 3 month interval. The doctor is very professional and pleasant. He remembers me as well and we can kid each other. I wouldn't change a thing.

I hope your follow ups turn out a little better.

Best wishes,
Bob
Posted 11/1/2009 4:42 PM (GMT -7)
fgolf, what a horrible experience you had - at the top PCa hospital on the east coast! What a darn shame, and a disgrace.

Your pathology report is weird...t3a denotes extraprostectic extension (which is not, to my knowledge, organ confined). EPE means that the cancer went into the capsule and broke through it somewhere - it is different that capsular penetration which I believe might still be considered "local." My husband is a t3a and his disease is considered "locally advanced" yet all his margins and seminal vesicles were clean. The chance of recurrence is greater but by no means a sure thing. In my husband's case, the surgeon knew there was a chance of EPE because one of the cores was very close to the edge of the gland. The surgeon cut much wider around the prostate than he needed to in order to obtain a clean margin.

May I suggest you have a discussion with your surgeon about your path report as it seems contradictory especially in light of the statement "don't be shocked if the cancer returns in 2 to 3 years".

Fgolf, I truly hope you are recovering nicely and can leave your hospital experience behind. When do you next see the surgeon?
Posted 11/1/2009 5:39 PM (GMT -7)
FiGolf,

Your post is very alarming and unusual.

Who was your surgeon? For those of us who are considering going there.

You chose Johns Hopkins Hospital to have the best treatment from the best of the bests. What your post read is the opposite. If all are facts it is a shame.
Posted 11/1/2009 6:12 PM (GMT -7)
FJGolf,

That is pretty crook hospital experience you describe there. The report seems a little contradictory at first glance but all in all I think it is pretty good. The P in Pt3a means it is the pathology stage (report of the removed prostate as opposed to the clinical staging given before removal).   Extent of tumour is a comparison of tumour volume to prostate volume which is moderate (that's good). While the report says organ  confined it makes an exception because there is a point of very small focal extention. There is a point where the tumour is through the capsule ( a fibrous layer around the gland itself much like the skin on an orange) but it does point out that this is a very small focal point extending only 0.1 of a millimetre). Additionally the prostate is never removed clean as a whistle but surrounding fatty tissue is taken with it and the edge of this fatty tissue is called the surgical margin. Your report states that the focal extention ends barely into the fatty tissue therefore your surgical margin is clear of tumour. All in all a pretty fine result and it is a credit to your surgeon that he was completely upfront and  mentioned the slight possibility that it could reoccur rather than say "I got it all!" No surgeon worth his salt should ever say "I got it all and you are cured"

Bill

Posted 11/3/2009 1:11 PM (GMT -7)
Thanks all for the feedback.Very much appreciated. Its a very good thing to be able to discuss all the variables assoicated with this disease with those of you that have gone through this mental and physical misery . Thanks Bill, for pointing out some of the more positve aspects of my path report. I was mostly focusing on all the negatives with the whole experience. For the most part, I think Hopkins has an excellent program for treating PC with top notch surgeons, although I don't believe I would recommend the surgeon I had. Best of luck to all.
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