Florida Cancer Centers

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

jerryg
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 1/28/2009 10:35 AM (GMT -7)   
Has any one received treatment at either Moffitt Cancer Ctr. in Tampa or MD Anderson Cancer Ctr. in Orlando?  My PSA is rising after Proton treatment at UFPTI and I have been told to consider HT (ADT) therapy.  Any comments or thoughts on these 2 places would be appreciated or recommendation of a Medical Oncologist who specializes in PCa. in the central Fl. area.
Thanks, Jerry
Prostate Cancer diagnosed Dec. 18, 2006
Biopsy 12/13/2006 Gleason score = 3+5=8
RRP Jan. 5, 2007
Pathology - negative margins from succesful surgery
10 mg Cilias M_W_F for 8 weeks
Almost no leakage after 5 weeks
Used Vacurect pump for 4 weeks before useable erection.
Presently using injections - PGE and Trimix caused really bad pain.
Now using Bimix - Bingo, good times are back.
Using very little Bimix and 50 mg Viagra-best combo
1-yr PSA .02
PSA July 2008 - 0.08.
PSA Aug. 2008 - 0.10
Started salvage Proton radiation treatments Sept 2008 at UFPTI.
35 treatments ended Oct. 21st.  Ending PSA .20
Minor uniary and rectal problems cleared up after a month.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4168
   Posted 1/28/2009 12:49 PM (GMT -7)   

The Postate Cancer Research Insitute's web site has a list of doctors and oncologists specializing in PCa and their locations. I would look at this list for doctors in FL.

If you are going to go through Hormone Therapy you shoud read Beating Prostate Cancer: Hormone Therapy and Diet, by Dr Charles Snuffy Meyrs.The PCRI web site also has a lot of info on side affects and methods to minimize them. Also Dr Leibowitz's web site, Compassionateoncology.com has a lot of info in the publication section.

Good luck.

JohnT


I had a psa of 4.4 in 1999 and steadily increasing psa every 3-6 months before reaching 40 in 5-08.Free psa ranged from 16 to 10%

I had biopsies every year, 13 total in all. I saw 5 different doctors, all urologists or urological oncologists at Long Beach, UCLA, UCSF and UCI and had an MRIS at UCSF in 2007. All tests were negative and I was told that because of all the biopsies I most likely didn't have PC, but to keep getting biopsies every year.

in Oct 08 my 13th biopsy of 25 cores indicated 2 positive cores, gleason 3+3 less that 5% in 2 cores. Doc recommended surgery.

2nd opinion from a prostate oncologist, referred by my wife's oncologists said cancer found wis indolant and statistacally insignificant, but PSA histor was a major concern and ordered a few more tests.

Color Doppler ultrasound with targeted biopsy found a transition zone tumor 18mmX16mm, gleason 3+4 and 4+3. CT and bone scans clear, but Doc thinks that there may be lymph node involvement (30% chance) because of my high PSA, and referred me for a Combidex MRI in Holland, currently scheduled for Feb 14.

Changed diet and takiing supplements while I wait. The location of the tumor plus the high psa make surgery an unlikely option. I'm still evaluatiing all treatment options and will make a decision once I get the results of the Combidex scan.

JohnT


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/28/2009 3:02 PM (GMT -7)   
We had a second opinion at Moffitt in 2002. The mistake we made was telling the oncologist that it was a 2nd opinion. He concurred with the first doctor....I have learned never to tell the second doctor that it is a second opinion. AND AT MOFFITT THEY DO ASK.... Pete had radiation and brachy in 2001 in Gainesville, FL...at North Fl Radiation....then the PSA began to rise a few years later.......and he had salvage surgery at Sloan Kettering in NY...a difficult decision, that was not productive in the end....I think that the more that men are treated for Pca, the more that salvage is going to be a percentage of the outcomes.
Your first shot should be the best,, but who knows what it is. The more I learn, the more I realize that really no one can be really sure...not yourself, your doctor, your neighbor, your wife, your second opinion doctor, and your third opinion doctor. . No one. You must read all you can, learn all you can..and also educate others all that you can. Then , after all that, get up on the diving board and take the plunge....Swim to the top and look to the sky! Good luck to you. Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!


AstroNerd
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 2/2/2009 7:58 AM (GMT -7)   
I had a robotic (da Vinci) prostatectomy on 1/22/2009 at Moffitt. My doctor was Dr. Pow-Sang. He's the Division Chief of the Genitourinary Oncology department. There are not enough words in any number of dictionaries to describe how happy I am with both the doctor and Moffitt staff. Everything about that operation is first class. They cover details I've never seen handled at any other facility. For example: free valet parking, at all times for everyone - not just the patient.

Moffitt is quickly earning a national reputation - I now understand why.

Best of luck.
Diagnosed on 9/23/2008, age 47
Gleason 6, T1c
open hernia surgery scheduled: 10/21/2008
da Vinci scheduled: 1/19/2009
clueless otherwise


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 2/2/2009 8:14 AM (GMT -7)   
Hello Astro,

Sounts like you had a good experience both with doctor/staff, and your stay. It's nice to hear that positive a report for a change. I hope you continue to heal well, and welcome back to the other side. Look forward to hearing more from you. Best to you.

David in SC
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 2/2/2009 8:22 AM (GMT -7)   
Jerry, sorry you are in this postition, it is similar to mine.
 
There is concensus that early administration of ADT does not ultimately alter the disease course if in fact the disease has gone distant.  I dont see that you have had any to date and you need to be aware that there can be substantial quality of life issues while on it.
 
The same suggestion was made to me but I insisted on knowing as much as possible if the source of my PSA was still local, my case differs with yours to the extent that my surgeon left after half my prostate in the robotic surgery.  By doing full body scans blood tests and an additional biopsy I am reasonable convinced that the cancer is gone and that my remaining PSA is being expressed by normal prostate tissue which escaped both the surgery and salvage IMRT.  I also think you are too soon out of radiaiton for the PSA to be truely meaningful at this time.
 
I talked to people at Moffit concerning a clinical trial I was researching and was very impressed with the kind and through manner in which they treated me.
 
Best wishes.  Scott


Diagnosed @ 48yo 04/07
focal, low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 PCA3 negative
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/2/2009 8:55 AM (GMT -7)   
Astro,

I live in SW Florida and have just about decided on robotic LRP. Lots of good choices in our area (Florida Hospital/Orlando, Aventura/Miami, Moffitt/Tampa). Was your surgery nerve-sparing? If so, how are your continence and ED issues? How experienced in robotic LRP is your doc?

Any other details about your history and experience at Moffitt would be appreciated. If you'd prefer to write to me directly, my e-mail address is included at left.

Good healing...

Tony
Age at diagnosis 61
Resides in SW Florida
12/07 PSA 2.6  12/08 PSA 4.0
Biopsy 1/09 - 6 of 8 nodes positive 
Left - 2 of 4 positive, 15% involved, 3+4=7 Gleason
Right - 4 of 4 positive, 40% involved, 4+3=7 Gleason
DRE small nodule on right - Prostate 22.6 cc's
Planning da Vinci - searching for surgeon


AstroNerd
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 2/2/2009 10:15 AM (GMT -7)   
Tony,

Yes, I had the nerve sparing robotic (da Vinci) procedure. He saved 100% of the "veil" and sphincter. I don't recall the exact number he's performed, but it's in the thousands. My procedure was just last week, so I'm still doing the catheter thing (ugghhh). Comes out Wednesday morning and I can't wait. I don't expect many incontinence issues since he was able to save the sphincter, and, I was doing my "keagals" for about two months prior to surgery. I won't know anything about ED issues for a while, but, there are already promising signs - 3 to 4 inch expand/collapse, even with that !@#$% catheter in place, so that's a good sign, right?

Pow-Sang wasn't the first doctor I met with, but he was the last. He's done a bunch of da Vinci LRP's, and the first thing he tells me (in a very kind manner) is that it's "not magic" and much of what I read about it is "hype". He went on to describe in detail, with hand drawings, all about this Veil of Aphrodite we're all so worried about. Any other doc I asked about it would simply reply "oh, yea, we'll try to save it". There was no aire of superiority at any time - he was very patient and kind through-out the consultation. I felt very "easy" in his presence and decided pretty much on the spot "this is the guy". I gave it the weekend, called Monday and scheduled the procedure.

The day of surgery (Thursday, Jan 22) we arrived at Moffitt 5am. I live about 30 mins from Moffitt so it wasn't that bad. I get banded and the wife does the paper-work thing. After about 30 mins they call back the first group, which I'm in, and we're off to get prepped. I get a stylish new garment to wear, they IV me and we wait a bit. Friends/family are allowed back at this time. The doc and one of his associates come by and chat for a few minutes (confirming what we're doing, etc). I don't remember much after that....

Surgery is scheduled for four hours (he's also doing a hernia repair). Throughout the procedure someone in the O/R kept my wife updated via phone at the various milestones. She wasn't just sitting out there worrying for four hours (actual time in O/R was 4 hours 15 mins).

I wake in recovery with no real pain in my abdomen, but it feels like there is an axe buried between my shoulder blades. They start pumping me full of morphine and I pass back out. This goes on for three hours. I'm moved to my room around 5pm. All rooms are private and there are sleeping arrangements in room for your spouse if needed. about 6pm I get an unreal pain in my right side. Morphine, oxycodone and dauladid didn't touch it. It was trapped gas and the only way to relieve that kind of pain is to get up, walk around and belch it out. That was 12 hours of very forgettable fun.

All those drugs they were pumping into me wiped out part of my memory. I don't recall big chunks of time the few days prior to surgery. I don't recall being told to count backwards, I don't recall leaving the pre-op area, etc. What I do recall is that no matter who it was, no matter what job they did, everyone I encountered at Moffitt was kind and patient with me. Everyone. Maybe because Cancer is all Moffitt does. If you're there, you have some form of cancer and the staff knows it.

best of luck,
Chris
Diagnosed on 9/23/2008, age 47
Gleason 6, T1c
da Vinci LRP performed 1/22/2009 at Moffitt Cancer Center
catheter due out on 2/4/2009


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/2/2009 4:38 PM (GMT -7)   
Chris:

Moffitt is now on the list to go visit. Thanks. I live in Venice, about an hour south of Tampa - where are you at? Someday when we can pee again, we should get a bite and compare notes. After all, we're in a unique fraternity fighting this beast.

Thanks again for taking the time.

Tony
Age at diagnosis 61
Resides in SW Florida
12/07 PSA 2.6  12/08 PSA 4.0
Biopsy 1/09 - 6 of 8 nodes positive 
Left - 2 of 4 positive, 15% involved, 3+4=7 Gleason
Right - 4 of 4 positive, 40% involved, 4+3=7 Gleason
DRE small nodule on right - Prostate 22.6 cc's
Planning da Vinci - searching for surgeon


AstroNerd
Regular Member


Date Joined Sep 2008
Total Posts : 56
   Posted 2/3/2009 2:03 AM (GMT -7)   
Tony,

I'm in Brandon - just outside of Tampa. I venture down to Venice a few times a year to dive for shark teeth. Scuba is one sport where a little leaking isn't a big deal. Warms you up in fact. :)

Yes, lets do lunch sometime...

cheers, beers & luck,
Chris
Diagnosed on 9/23/2008, age 47
Gleason 6, T1c
da Vinci LRP performed 1/22/2009 at Moffitt Cancer Center
catheter due out on 2/4/2009


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/3/2009 4:48 AM (GMT -7)   
Chris:

Catheter out tomorrow, right? I'm jealous you're on the other side and doing so well. I still have that hill to climb. By the way, I have an acre smack dab on the Gulf midway between the inlet and the pier. Walk through our back yard, over the viewing deck and you're in shark's tooth heaven. My wife has jars of mostly small ones she's picked up on our beach over the years.

Hope post op day #12 is your best yet.

cheers, beers and cigars,

Tony
Age at diagnosis 61
Resides in SW Florida
12/07 PSA 2.6  12/08 PSA 4.0
Biopsy 1/09 - 6 of 8 nodes positive 
Left - 2 of 4 positive, 15% involved, 3+4=7 Gleason
Right - 4 of 4 positive, 40% involved, 4+3=7 Gleason
DRE small nodule on right - Prostate 22.6 cc's
Planning da Vinci - searching for surgeon


Godfather
Regular Member


Date Joined Jan 2009
Total Posts : 64
   Posted 2/4/2009 4:34 PM (GMT -7)   
jerryg:

Didn't mean to hijack your thread. I've heard good things about Moffitt but don't know anything about the therapy you cite. Good luck in your search and let us know how you do.

Tony
Age at diagnosis 61
Resides in SW Florida
12/07 PSA 2.6  12/08 PSA 4.0
Biopsy 1/09 - 6 of 8 nodes positive 
Left - 2 of 4 positive, 15% involved, 3+4=7 Gleason
Right - 4 of 4 positive, 40% involved, 4+3=7 Gleason
DRE small nodule on right - Prostate 22.6 cc's
Planning da Vinci - searching for surgeon

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, February 19, 2018 7:11 PM (GMT -7)
There are a total of 2,931,036 posts in 321,590 threads.
View Active Threads


Who's Online
This forum has 160326 registered members. Please welcome our newest member, msritalalala.
445 Guest(s), 13 Registered Member(s) are currently online.  Details
Mak37, Crispix, scifigal2k, Solaris719, jovana, compiler, Bohemond, cakegirl, doors12, garyi, njs, three 5's and a jack, Bob656