Welcome new friend- FLABeachgal

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James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 3/25/2010 10:06 AM (GMT -6)   
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.

FLBeachgal
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/25/2010 2:07 PM (GMT -6)   
Thanks for the welcome James!  I have been a lurker for several months and want everyone to know what a great resource this forum is - lots of our questions have been answered here, and we've learned a lot along the way.
 
Kudos to all the guys and gals who make this forum so valuable!

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 3/25/2010 3:26 PM (GMT -6)   
Welcome to the site.
Age 55   - 5'11"   215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6 
06/25/08 - Da Vinci robotic laparoscopy
05/14/09  - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/25/2010 3:31 PM (GMT -6)   
I know I shouldn't say it, because someone will accuse me of being a surgical bigot, which I am not,  but every once in a while we find an example of where surgery is the only way in some cases to know what really is up.
 
I realize the counter argument is to have a color doppler and maybe a Combidex, or some other not so readily available procedures to do a better job of diagnosing, or everyone has a 32 or 48 saturation biopsy to be sure that we correctly diagnosed the PC.
 
Until medicine and the insurance companies can come up with a protocol that keeps these misdiagnosed cases from occuring, for many, surgery is still a very good choice of treatments.
 
With a Gleason 9, I felt I didn't really have a better choice, so I went that route and it has been good.  Upgrades of Gleason 6 to 7 are not rare, but 6 to 8 is quite a jump.
 
Best of luck to you guys.  Glad you are in competent hands with Dr. Patel.  We have heard good things about him.
 
Welcome to HW, and thanks for sharing your story.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 3/25/2010 3:44 PM (GMT -6)   
 
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


Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
Open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 3/25/2010 3:55 PM (GMT -6)   
Welcome to the best prostate cancer forum there is!

I too am the wife of a prostate cancer survivor...your husband's story is a classic example of why surgery can be the better treatment option. That nasty Gleason 5+3 needed to hit the road...

Sounds like you and your husband are doing well both physically and emotionally. And yes, your life for a while will be measured in terms of when the next PSA test is scheduled...sure does make the time go quickly (LOL)!

Hope you'll stay with us.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (solitary focus of extraprostatic extension). Perineural tumor infiltration present. Apex margin, bladder neck and SVs negative. Final Gleason 3+4. PSA: 0.0 til July 2009. August 2009 - 0.1, September 0.3, October back to 0.0, December 0.0, March 2010 0.0. Next PSA in 6 months. Thank you God!


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/25/2010 4:04 PM (GMT -6)   
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

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


rhb47
Regular Member


Date Joined Mar 2010
Total Posts : 208
   Posted 3/25/2010 4:22 PM (GMT -6)   
Hi FlBeachgal (I'm one too) Thanks for the info on Dr. Patel. Sounds like you guys did a lot of reseach between diagnosis and surgery. How long was it between biopsy and surgery?

FLBeachgal
Regular Member


Date Joined Mar 2010
Total Posts : 46
   Posted 3/25/2010 7:10 PM (GMT -6)   
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
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/25/2010 8:24 PM (GMT -6)   
John,

I knew you would catch me. You know I agree with you in principal, but what I was really saying is that we just don't seem to have a universal protocol to follow. So many doctors do their own thing and follow what they have done for 20 years. If a patient is fortunate enough to live near a major cancer center or centers like I was, we have that information to a much better degree.

The other issue is when it is diagnosed as a G6, everyone seems to relax a little and start thinking AS or whatever, and maybe not pursue second opinions as agressively.

It just seems as tho some major medical group of Urologists, Cancer Society, etc. could develop a kind of standard for PC diagnosis, biopsy regimen, and lab testing that would insure proper diagnosis and staging for the guy in Podunk, as well as for the guy in New York.

Until that time, I still insist there is no absolute way of knowing what it is until we slap the prostate on a table, cut it up, and make slides.

May be crude, but it is effective.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 3/26/2010 11:44 AM (GMT -6)   
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

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


deer hunter
Regular Member


Date Joined Jan 2010
Total Posts : 250
   Posted 3/26/2010 2:25 PM (GMT -6)   
Hello FLBeachgal sorry you jioned us but its a GREAT place to be with our pc sound like ya'll are doing okay under the circustances hope ya'll end up in the zero club!!!!!!!!!
DEERHUNTER
dx age 57 01/06 open RP 4/06 psa in 01/06 8.1  surgery path report Gleason 3+4=7 poorly differentiated  tumor was 90%involved in both lobes surgical margins postive. in the right apex and right radial margins tumor grade G3  perineural invasion present high grade of PIN found  T2c NX MX PSA 0706  .01 10/06 .02 01/07 .03 04/07 .04  06/07 .05  07/07 .08 07/07 bone scans pelvic ct neg. 08/07 proscintic scan neg.9/07 psa.10 net with rad onc. wanted to do SRT but i did not do it 10/07  saw a new dr at Emory University [my old dr urg. suggested second opinion ]  bone scans negs ct scans pelvics neg. biopies of the bladder and adrinal glands neg.another proscintic scan neg.12/07 Psa .11 clinial trial Emory injected with protons to try and find the cancer cells no luck 3/08 psa .17 06/08 psa .23 psa 09/08 psa .32 12/08 psa .39 3/09 psa .39 6/09 psa .43  meet with medical onc. he said  i might have waited to long to start SRT 7/09 psa .50  another bone scan ct scan all neg.MRI neg. meet rad. psa the last of 7/09was .55 onc. 7/09 started casdex 50mg 1 day for 30 days 2 shots of lupron started rad treament 10/09 40 treatments 75 gm 12 shots each time all aroud pelvic finished 12/09  psa .07 and psa 01/10.05 next dr visit 03/10 wait and see 3/10 psa.05

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