New Memeber....Refrences?? Questions

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MIZRAV
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 10/11/2009 7:02 AM (GMT -6)   
Hi Everyone ,
i am a new member on this site which came recommended to me by an old friend with the same disease....i was DX with Gleason 6 cancer by my Uro DR Antonio Reyes in Pembroke Pines FL which i am considering to do a Da Vince procedure with him but i could not get any references about him
If anyone knows or heard about him i would appreciate a response....

Thanks a lot
Age 58
DX September 2009 by Dr Antonio Reyes
Biopsy @ Memorial Hospital Pembroke
Gleason 6 (3+3)

2 out of 10 with 10%

no treatment decision yet ....

Post Edited (MIZRAV) : 10/11/2009 8:32:50 AM (GMT-6)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 10/11/2009 7:10 AM (GMT -6)   
MIZRAV, hopefully someone will come along soon to answer your question.

If I might correct you, there is no grade 6 cancer. I suspect that what you have is Gleason 6 - this is the grading system used in prostate cancer. Gleason 6 is usually very treatable but should you choose surgery, the final pathology report will provide more details about the extent of your cancer than the biopsy did.

Good luck with your surgery, and please keep us posted.
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 (bone scan clean!).


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 10/11/2009 7:15 AM (GMT -6)   
Mizrav,

First, welcome to this site. This is a great place to find information, support and share a little of yourself with a bunch of great guys and some gals. As we always tell the newcommers, sorry you have to be here, but glad you found us.

I assume that when you said stage 6 PCa, you mean Gleason score of 6. Depending on your age and other factors, surgery is not an only option. Have you considered other alternatives?

A big theme here at the forum is getting second and third opinions from specialists in different field, like oncology, radiation, and urology.

If you could share a little more about your stats in the signature, it would make it easier for the crowd here to give you their opinions.

Lastly, to your original question. I am sure others will be replying shortly. Since we have several Floridians here, it is likely they may know about your doc.

Best of luck on your journey. Keep a cool head and take your time making a decision.

Greg

Father died from poorly differentiated PCa @ 78 - normal PSA and DRE

5 biopsies over 4 years negative while PSA going from 3.8 to 28

Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere+Avastin)

PSA prior to treatment on 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60

RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins

PSA undetectable for 8 months, then 2/6/2009-0.10, 4/26/2009-0.17, 5/22/2009-0.20, 6/11/2009-0.27

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 7:39 AM (GMT -6)   
Welcome here! Glad you found us.

There are 4 stages of the cancer, and Gleason numbers up to 10. Chances are, you are a Gleason 6. With a Gleason 6, depending on a few other factors, you usually would have the most primary treatment options. It would be good too study and know these options before locking down on a choice, if you haven't already.

We are here to support you regardless of what treatment you choose.

David in SC
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: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - first treatment IMRT.


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 10/11/2009 1:48 PM (GMT -6)   
Greetings, MIZRAV.  Welcome to the forum.  I live in Virginia so don't know anything about your doctor in FL. I know we have lots of folks here that have ties to FL so hopefully one of them will join in soon.  David
Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


bchbab
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/12/2009 2:05 AM (GMT -6)   
hey, your best bet in FL is Jan Manarite in Sanibel. She works with the PCRI. My dad was diagnosed with stage 4 pc and lived for 7 years. trust me. pcri.org, melody (you can reach me at mel81570@hotmail.com

BigG
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/13/2009 11:29 AM (GMT -6)   
MIZRAV
 
I was diagnosed November 2008, Gleason (3+3)6  2 of 12 5%  PSA 3.5 and fairly steady over about 5 years  stage T1c
 
From your intial post it sounds like you have time to investigate, you do not need to rush to a decision.  Some additional information would be helpful.  Has the doc staged your cancer?  Do you have a PSA history?  Do you know your prostate volume?  Calculations of PSA doubling time and PSA density can be helpful.
 
There are many good resources available.  As mentioned in other posts the Prostate Cancer Research Institute has a wealth of information.  There are calculators for PSAV and PSAD.  In addition there are mailing lists on several topics including surgery, radiation, new diagnosis, asking a physician, incontinence and intimacy as examples. 
 
Another excellent resource is USToo (www.ustoo.org).  There are links on their site providing lots of info.  You may also be able to find a chapter near you that you could contact.  At our chapter in Illinois we are lucky to have a very knowledgeable individual to talk with.  At our monthly meetings there is the opportunity to talk to men that have been through what you are thinking of doing.  There is also a partners group providing information and support to partners of men with PCa.
 
I strongly agree with the suggestion made to get second (and third and even fourth) opinions.  One of the first places to start is by having your slides read by another pathologist.  Did a local lab read your slides?  Reading slides is as much an art as a science.  Most labs do not have an issue in sending the slides to another lab for reading.  If yours does, remind them they are your slides and you have the right to have them sent.  The original slides should be sent and they should be returned.  One of the top labs to have your slides read at is Bostwick Labs in TN I believe.  If you go to another doctor he may have his own lab read them.
 
My wife coordinated having my slides read by 4 different labs.  I was lucky, as in my case all readings agreed within a very small range.  I felt confident then that I was dealing with good (accurate) numbers.  There have been many cases where the gleason score was upgraded (or even downgraded) with further readings. 
 
Unless you are dealing with a Urological group that has different specialists on staff (radiation oncologist, urological oncologist, surgical urologist and others) you are probably dealing with a Urologist that provides one treatment, and in your case, it sounds like his specialty is surgery.  The unfortunate thing is that it is then up to you to investigate and understand the options.  That in part is why you need other opinions and why the resources above are so valuable in helping to understand the options, pros and cons and complications.
 
The Dattoli Center is a radioloigcal oncologist group in Sarasota, FL that has a very good reputation and is doing advanced work with radiological treatments.  They are however concentrated on radiology and could be one very good source of information. 
 
In dealing with a surgeon one thing that is very important is the experience the surgeon has.  Ask your doctor how many surgeries he has performed, both open and robotic.  The more the better.  In one retrospective study I read was a coorolation between the number of surgeries done and long term outcome.  The number they quoted was 200 surgeries.   
 
Any treatment has risks.  The doctors. may not tell you all the risks.  For example, in radiation there are possible rectal issues that the radiologist had not mentioned to me.  In any surgery there is a risk or reaction to the drugs and death (around 0.3%) as well as the risk of infection.  Even with nerve sparing there are complications.  Incontinence runs about 10%, impotence about 32%.  All these numbers are only numbers or odds until they apply to you (both numbers from  European Association of Urology Supplement 8 (2009) 418-423).
 
There is not a perfect option.  It is your decision.  The decision needs to be made both on medical and emotional factors.  How well you can tolorate an option, what quality of life issues are important to you as well as things only you know.
 
I have been researching PCa and options for the last year.  As I learned I had time, I cancelled surgery to give myself time to think.  My wife has been very valuable in helping to organize and set up appointments as well as helping me to slow down.  As a result and given my numbers I have chosen Active Surveillence as my current treatment.  I have recently joined an AS research study with a Urological practice at the local hospital.  It involves regular blood and urine testing as well as exams.  The disease will be monitored closely.  Should there be a change in the numbers or staging I will then seek other treatment.
 
This option has advantages as well as disadvantages.  The pros are that I don't have the complications of other treatments and that it allows time for further advances which are being made in PCa treatment all the time.  Robotic surgery is fairly new and has reduced complications as experience grows.  There are trials that should be starting soon with nano-robotic delivery of medication directly to the tumor that holds promise. 
 
There are also downsides.  Quarterly blood tests,  semi-annual DRE's, annual biopsies.  They all have risks.  The risk of blood infection from a biopsy is less than 1%.  Unfortunately for me, I became one of the less than 1% after my last biopsy.
 
I have probaly gone on too long.  I have been a part of USToo for a year now.  I have done a lot of research.  The best advice is follow the resources listed here and in other posts.  Talk to guys who have been through it.  Don't let anyone tell you what you "should" do (including the doctors).  Get second opinions, include your feelings in the decision, as quality of life means different things to different people.  Most importantly, make your own decision from a position of knowledge.
 
Good luck.   
 

JoeFL
Regular Member


Date Joined Oct 2009
Total Posts : 420
   Posted 10/13/2009 1:22 PM (GMT -6)   
MISRAV,
 
We are very similar at this point in that I was DX in Sept. also. While I am a newcomer, I can give you one piece of advice....your Gleason score of 6 indicates that you can slow down on making a quick decision. I am a good example of someone who is heading in a different direction after talking to my Urologist, two Radiologists and an Oncologist and doing a lot of reading on this website. I recommend that you read the string that begins with "Firmly on the fence". It is a good, frank discussion among a lot of the guys on this site about the decision between surgery vs. seed implants (with or without accompanying radiation). Tudpock and John T. have some very good points to consider....as do the proponents of surgery.
 
My first reaction early on was that I wanted surgery. Further research (and my stats below) have changed my mind. While I have not made the final decision yet, I am almost positive it  will be seed implants with 5 weeks of IGRT.
 
As several of the guys have already pointed out, there is a lot on information to process and you have some options available to you. The choice in the end shoud be the one you are the most comfrotable with.....nobody has "the answer". Best wishes on the journey....I'll be on the road with you.
 
_________________
 
Age - 67  PSA - 4.5  Gleason - 3+3=6  Stage T1   Cancer found in 5 of 8 sections. Ct and Bone Scans were negative.
 
 

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/13/2009 1:56 PM (GMT -6)   
Hi MIZRAV,

Just wanted to say hello and be sure to read BigG's post above on Active Surveillance (AS) protocol. Your numbers and his are very close to each other.

BTW Hello to BigG as well. Not many AS members here and it's is most refreshing to see some of the folks that have gone this route to come here and give us their insight into this protocol.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08


MIZRAV
New Member


Date Joined Oct 2009
Total Posts : 6
   Posted 10/14/2009 3:01 AM (GMT -6)   
Thank you all for all the great info and suport i hope to read more posts and knowledge anywhere i can get it from and make the right decision for myself.... i will keep visiting here to hear and read more opinions as you are the more experienced ones....

Thank you Big G and i hope we both come out well from our similar journey....

JM
Age 58
DX September 2009 by Dr Antonio Reyes
Biopsy @ Memorial Hospital Pembroke
Gleason 6 (3+3)

2 out of 10 with 10%

no treatment decision yet ....


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 206
   Posted 10/14/2009 3:18 AM (GMT -6)   
Hi MIZRAV,

i am glad you found a crowd that can respond well to your fears and questions, i recall my days of fear and urgency .. wish i had found this forum myself before surgery ....

take your time with your decision ... the key factor is who is the surgeon as it is a delicate operation, from my experience and knowledge , and after a long research ....if an operation route is chosen, it seems that the DaVincie robotic procedure is mostly not only popular but also the one with the better chances for faster and easier recovery as well as gives you the best chances of better quality of life there after
(oppose to open surgery or LRP (Laparoscopic procedure).
one of the more popular and known surgeon i have heard of , was through this forum where one of the members here had done his procedure at Mount Sinai Hospital / NYC with Dr. David Samadi ..there is a wealth of knowledge and videos on their site

http://www.roboticoncology.com/

check it out my friend....

good luck and if i can be of any more help just let me know!!!

GB
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response. 3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
PSA  still Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 


BigG
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/14/2009 10:06 PM (GMT -6)   
MIZRAV,

This is one of the most important decisions that you will make. It is an irreversable decision in most aspects and you cannot really ever know if you have made the right one. Each option has pros and cons. You do have time for research. As others here have counseled, take your time and do research.

If you choose DaVinci, there have been studies that have shown, with the right surgeon it has significant advantages. There is significantly reduced blood loss reducing the need for a transfusion. Shorter stays in the hospital reducing the risk of a secondary infection from the hospital environment and complications, though not eliminated are significantly reduced. The experience of the surgeon is key. Do not be afraid to ask how many surgeries he/she has performed and what the outcomes were.

One concern with surgery for some men is obesity. DaVinci in particular and surgery in general becomes significantly more complex in obese men. Don't know if that is a factor for you but something to keep in mind. In one study I read the breaking point was a BMI (body mass index) greater than about the mid 30's. Above that there was incresed concern. I noticed the topic on a different thread.

One of the hardest thing for us is to question the ability and judgement of our Dr. Now is the time though to overcome that fear. It is very important that you feel comfortable with the person who is going to (choose your option) on you. And as mentioned a surgeon will most probably not talk about other options. You need to research them yourself and be your own advocate. I have run across many men who have moved quickly to a treatment then had issues (as I almost did).

You do have time. I was fortunate, I started to research this disease and learned about it before I had made a commitment to a treatment. The more I understood the clearer it became to me that Active Surviellence was a good choice for me and fit my mindset. Due to advances in diagnosis many more men are being diagnosed earlier. In many cases radical treatment will not extend their life.

AS is not an easy decision. There are risks as well as the physcological facter of living with cancer. When I get a chance I will open a thread with the information I have learned and see what the interest is.

And to the others, thanks for the kind comments.

Good Luck MIZRAV and let us know how it goes. There will be many more men behind you that can learn from your experience.
DX 11/2008
Age @ DX 59  
2 of 12 cores positive
5% each core 
Gleason (3+3) 6 for each
Last PSA 2.87   (Hybritech access assay)
Currently in Active Surviellance study


GBINAB
Regular Member


Date Joined Apr 2008
Total Posts : 206
   Posted 10/15/2009 12:51 AM (GMT -6)   
BigG said...
MIZRAV,

This is one of the most important decisions that you will make. It is an irreversable decision in most aspects and you cannot really ever know if you have made the right one. Each option has pros and cons. You do have time for research. As others here have counseled, take your time and do research.

Good Luck MIZRAV and let us know how it goes. There will be many more men behind you that can learn from your experience.



GREAT ADVISE BigG

Mizrav is an old friend of mine and the first thing i had suggested (since i am also a survivor and a member here ) is to research research and research...and the first step is register in here and hear all of you.....the most important research is how qualify ids the Surgeon as you said... i for one rushed into my decision not knowing much about it ..but for my Uro/ Surgeon credit he laid out all the options for me and recommended to meet with other Dr.s as well (Radiologist and oncologist)... and even explained to me the pros and cons of a watchful waiting...i even read that Cyan tablets (which generated from spicy paper) with combination of nutritional approach such as healthy diet that consist of lots of greens vegies, fruits, Pom Juice, Soya etc etc will reduce the cancer or even may eliminate it in the non aggressive cases (most cancers being treated with green diet in addition to the medical approach..).

so i am sure that each one of us pick the right choice for themselves with the right know how... i am lucky enough to be able to have as close as to normal quality of life after my open procedure , thankfully to a good surgeon as well.

Good Luck as well and keep us reading and informed
and again thank you for your posts....


GB
April 2007 PSA 8.4 for last 6 months biopsy shows PC 3+3=6
June 13 2007 Nerve Sparing open RP / Dr. Christopher Johnson at St. Francis Hospital NY.
4 days later home for Fathers Day, and Catheter.
Removal of catheter 10 days later , incontinence not an issue, no pads used from the get go.
1 month PSA next to not detected

ED is a longer battle:
1 month out start using occasionally Cialis and 50MG Viagra to promote blood flow with no response. 3 months and 6 months PSA not detected
ED 6 months mark starting with VED therapy and being more aggressive with meds , in addition taking Folgard supplement daily.
April 2008 : 10 month out and start seeing some serious improvements with ED while using Meds and VED , can achieve erections, Mid nights erections almost on a regular basis , and uncontrolled 90 % erections spontaneously.

UPDATE 1 YAER FOLLOW UP
ED: With Viagra Usable erection for intercourse , AND AT 80% without any medications !!
Fully continent since removal of catheter.
PSA one year : 0.0 as of 6/13/ 2008 BIG Wooohoooooooooo!!!!
 
UPDATE AS OF Dec 2008 (18 months out)
PSA  still Undetectble!!!!
No continance issues!!!!
ED Mostly  getting better  with oral meds and the right woman  = good  sex
80% without any help   and 95% with oral Meds ... 100% with  VED
hope to keep progressing and by 24 months get back to 100% potency  WooooHoo!!!
 

Post Edited (GBINAB) : 10/15/2009 12:55:01 AM (GMT-6)

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