Experience at Hopkins (VENTING)

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.

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.

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Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.

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?

That's awful. I'm so sorry.

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Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

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

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Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Four PSA tests undetectable, latest Oct 30

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?

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Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (extraprostectic extension in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV negative. Gleason 3+4 (no change from biopsy). PSA results: April 2008 0.1; May 2008 0.0; August 2008 0.0; November 0.0; February 2009 0.0; May 2009 0.0; August 2009 0.1; September 2009 0.3. Met with radiation oncologist and began process for salvage radiation. CT scan and bone scan done on October 8. One spot on bone scan (clavicle) being investigated. Third PSA taken on October 16 - PSA IS UNDETECTABLE! Next PSA scheduled for early December. Urged not to begin radiation treatment until it's needed (no problem there!).

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.

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57 year old
1st. biopsy atypical
2nd. biopsy 7/07/09 3 out 12 cores positive all 3x3's Gleason 6
PSA 3.4
T1c

Had a moderate BPH for past 4, 5 years. Medication did not help.
cycling, walking and other physical activities decrease my "voiding problem by 75%.
Driving my car, sitting around at work or watching TV and inactivity increase it by 75%

Diet: 98% animal fat free for past 25 years at least.
I watch what I eat, mostly organic and well made products, but I am always on the look out for any food or drink that causes me any digestive problem and I eliminate it from my diet.

Drinks: Mostly red wine with lunch/dinner

Activity: Walking 5 to 7 miles every other day. Cycling 15 to 20 miles every other day.

Action taken: Still in the research and learning stage.

FJGolf,

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.