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craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/15/2010 10:08 AM (GMT -6)   
This forum has been great for me-- first-- thanks. I got my pc dx last week. My psa had gone from 4.7 to 5.2 over 2 years so I got a biopsy.3 of 12 cores positive for ca. All 3 near rt apex. Glson 3+4=7. I am 55 and in great shape.I am going for a prostiscint ? scan next week. I told my uro to send out the tissues for a second patho opinion. And I have a full blown 2nd uro appointment next week for a second opinion. I am scared of course.My uro said I shouldn't worry-- funny how I cling to that and it helps very little. Any thoughts? I am unconcerned about the procedures I will face and simply concerned with staying alive.-- craig

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/15/2010 10:09 AM (GMT -6)   
Craig, welcome to HW, hate you're here, glad you came.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/15/2010 11:27 AM (GMT -6)   
Craig, welcome here, glad you found us. Great place to be for support and advice ahead in your own PC journey. A dx. of cancer always invokes fear in the heart of a person. It wouldn't be normal not to.

Looks like you are doing the right things, getting that second opinion. Wouldn't hurt to talk to a radiation oncologist as well, before any firm decision is made.

We are here for you, by the nature of your dx, you are now a brother of the PC, like the rest of us.

Come and post often, ask as many questions as you please.

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
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 in at the same time, 2/8-Cath #11 out - 21 days


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 2/15/2010 2:25 PM (GMT -6)   
Craig, sounds like you are doing what needs to be done to understand your particular disease. Being scared is part of this journey.

The second opinion on your biopsy should help you make the decisions that are ahead of you. Once you have your "full blown" appointment with the uro, please feel free to come back and talk to us.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV 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. Thank you God!


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/15/2010 2:31 PM (GMT -6)   
Hi Craig,
Welcome to HealingWell. You have to learn as much as you can now to make sound decisions on what to do later. There are many experiences to draw from, and you have time to do it. The second opinion idea is a good one. Don't be afraid to get them from doctors that practice different treatment modalities. I have a rule of thumb I tell all patients ~ stay positive. I believe in the power of positive thinking. And remember that fear is always strongest early on in a cancer diagnosis. It gets lightened up with education.

Peace to you,

Tony
Prostate Cancer Forum Co-Moderator


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 2/15/2010 2:38 PM (GMT -6)   
Craig: Welcome to the group. Most of us here have been in your shoes. Time now to get educated and the wait for your appointment with the Uro. After that you will have the big decision as to what treatment is best for you, if any. We are brothers in PC and a here to support each other as best we can. Good luck and I wish you well. Happy Mardi Gras

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.
15 months out injections Caveject (success)


gold horse
Regular Member


Date Joined Nov 2009
Total Posts : 360
   Posted 2/15/2010 2:58 PM (GMT -6)   

Hi Gray when I was told  by my dr that I had pc there was a silence inside my head for about twenty seconds,then my doctor

said you will be fine.but thet was not enough for me;that was five years ago and my psa today is 0.04 that is the reason I posted today to give new comers the encourament from patients whom had experinced almost all kind of treaments.get educated and like I was told you will do fine God bless you.yeah

 


DIAGN=46 YEARS
GLEASON=3+3
FATHER HAD PC,THEN I THEN MY BROTHER STILL HAS TWO BROTHER PC FREE.
MARRIED,TWO CHILDREN.AGE 13 AND 8.
LAPROSCOPY SURGERY 6/2005
PATOLOGY REPORT.
GLEASON=3+3
TUMOR VOLUME=5%
LYMPHOVASCULAR INVASION=NEG
PERINEURAL INVASION=POSI
TUMOR MULTICENTRICITY=NEG
EXTRAPROSTATIC INVASION=NEG
SEMINAL VESICLES BOTH=CLEAN
MARGIN ALL=NEG
PT2ANXMX
DEVELOP SCART TISSUE AND NEEDED A SECOND SURGERY BECAUSE COULD NOT URINATE,
PSA 6/05=0.04,0.04,0.04,6/06,0.04,0.04,0.04,6/07,0.04,0.04,0.04,6/08,0.04,0.04,1/09
0.04,10/09,0.04
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/15/2010 3:50 PM (GMT -6)   
Your scan(s) will not showing anything and Prostascint is not worthy because of possible false positives, but with your lower numbers(stats) any scan should be clear and as Dr. Strum mentions alot of $$$$ are wasted on these test, different if one has higher appearing stats...but hey you will see how crazy PCa is on a daily basis from now on. Put on your A game for interpretting bias, agenda and/or possible b.s. I am mentioning this for your own good, even though others will say how dark or negative...it is your life and quality of life that is in the balance (value to you is ?????)

You might wish to seek opinions from radiation onco-docs and a PCa onco-doc and compare what you learn and have heard....you would be amazed. As an idiot I got 8 opinions...what an education in the real world of PCa...priceless...no book could render the same. I was not shopping for the word cure, the first doc guaranteed me that (he was wrong also).

My scans wear found clear: bone and ct scans done.....Oh my stats: 2002 (Feb-Mar) total urinary blockage emergency room, psa level 46.6 Gleasons scores found 7,8,9's on both sides, 75-95% cancer in all 12 core samples (got PCa? more than idolent? LOL)...So far amazed I am doing as well as I am thus far, although the protocols and journey I took are far from average or the norm, that is another thread.

Get the book: A Primer on Prostate Cancer -Dr. Strum (AAAA++)
Youth is wasted on the Young-(W.C. Fields)


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/15/2010 6:59 PM (GMT -6)   
Thanks for your comforting informative comments all. Does anyone think I should not get the prostiscint scan? Is there a better one? How else will one determine if the ca spread?
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/15/2010 7:00 PM (GMT -6)   
does it sound like I may have gotten at this early ?
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


defender3
Regular Member


Date Joined Nov 2009
Total Posts : 98
   Posted 2/15/2010 7:12 PM (GMT -6)   
Welcome to the forum - good to see you're taking the time to learn as much as you can!

Im_Patient
Veteran Member


Date Joined Aug 2009
Total Posts : 665
   Posted 2/15/2010 8:02 PM (GMT -6)   
Craig, it's worth mentioning this - it's said a lot here. You have time to do research and make up your mind. Don't feel like you need to rush. That would probably be the biggest mistake. Take your time. My head was swimming for quite awhile after the diagnosis. You'll finally end up talking to a uro, surgeon, radiologist, whoever, that will instill the right sense of confidence in you and provide you with what you need to make the informed decision.
Peace
Jeff
Gleason, 3+4; PSA, 7
Robotic Prostatectomy, March 2008 (Age 48 then), nerves both sides spared, post surgery analysis confirmed 3+4 Gleason,
cancer contained, no penetration, lymph nodes clear
PSA consistently <0.1 since surgery until Oct 09, 0.1; retested Oct 09, <0.1, Jan 10, 0.2; retest confirmed 0.2


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 2/15/2010 8:13 PM (GMT -6)   
Craig,

Welcome, and you've come to a great spot for info. Your stats match mine almost exactly. I'm 54. I had my annual physical in March of 2009. PSA had gone from 1.3 to 4.6. Went on an antibiotic for weeks to rule out prostatitus(inflammation). PSA dropped to 2.9. Off ab's and PSA shot up to 5.6. Biopsy in September - 2 cores hit. Gleason 4+4. Scans clear. DaVinci surgery Nov 09. PSA now undetectable, and post surgery pathology showed left side tumor contained within the margins. They took my left-side nerve bundle. You sound like you've caught it early so keep the faith. PC fortunately is a slow grower. I had the most aggressive type, and we still got it early enough, so know that the cure rate for PC is very high and getting even better. Each of us here had to deal with it, and we each had to call our own touchdown pass. Good luck with your analysis, and bounce anything off of this forum.

Hoyt
Age 54
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable at < .05
Continance: Night and morning fine and improving
Doing 3 P's and now using trimix


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/15/2010 8:14 PM (GMT -6)   
thanks-- I have read a ton-- and talked to one uro, another next week and soon a surgeon or two and a radiation oncologist...---- but as you know you do feel the need to not waste too much time...I don't think that without the second patho report sand the scan that frankly there is enuf info here to decide any course of tx---- Peace to you as well --- criag
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/15/2010 8:17 PM (GMT -6)   
HOYT-- MANY thanks for that amigo--- you have helped me alot with that!
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/16/2010 6:07 AM (GMT -6)   
Craig get the book - A Primer on Prostate Cancer -Dr. Strum (asap) and read on brother, you will be amazed how much you will learn at a fast pace. The scans most patients get are generally useless, nice to make money on us through insurance, they are not definitive enough and usually unneeded on the majority of patient stat presentations (not my thoughts...Dr. Strum and others whom know PCa, know other docs, know the system, have seen patients globally at all presentations and treated them for years), has witnessed such and mentioned in his book(s).

The typical uro doc and some other types are in the dark ages compared to what is already known, like the uselessness of most scans...like dumb uro's doing a DRE (rectal exam) first and then taking your blood test for PSA (it will be skewed higher because you disturbed the gland and gives off more PSA's) and still this practice is happening, by 'expert' Uro's. Many uro docs if and when putting patients on hormone therapies (especially if they have higher psa or stats) make the error of not using casodex or similar, first, so as to prevent PCa flare...my uro made that error and after a couple others..got fired. Now not all Uro's are dumb, but the fact they this goes on still should be a huge clue as to what the further intelligence that could be handed out to you, to make your quality of life or life decision about. Hope I didn't sugar coat anything (lol).

Plenty of time for coombye ya after you get your treatment and come back on the forum, hope you see clearly what your choices and the ways of PCa assessment, frankness and truthfulness is in actuality. Education is your best friend for living with the decision(s) or choices you can make.


Youth is wasted on the Young-(W.C. Fields)


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 2/16/2010 6:24 AM (GMT -6)   
Craig, regarding ProstaScinct, our uro said he doesn't use it because it is unreliable...have to agree with Zufus on this one. Trying to determine whether or not your PCa requires treatment at this time - and what that treatment should be - is not easy. Best of luck to you.
Husband diagnosed in 2/2008 at age 57 with stage T1c. Robotic surgery performed 3/2008. Stage upgraded to T3a (single small EPE in posterior left). Perineural tumor infiltration present. Apex margin, bladder neck and SV 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. Thank you God!


Bootheel
Regular Member


Date Joined Oct 2007
Total Posts : 300
   Posted 2/16/2010 8:57 AM (GMT -6)   

Hi Craig, and welcome to the forum. You have come to a great place for information and support.  Research all you can before making a decision on what type of treatment you choose and don't look back.  Good Luck to you.


Age 65
Diagnosed 10/12/07
PSA 6.3
Biopsy 18 core samples, 2 positive <5%
Stage T1a Gleason 6 (3+3)
LRP  1/29/08
Post-op
Gleason 7 (3+4)
1 positive margin (.3cm)
T2C
4/16/08- Started Bi-mix injections 
5/15/08- 1st Post-Op PSA 0.07 Undetectable
8/11/08 -2nd Post-OP PSA 0.02 Undetectable
8/15/08- No more pads as of today  Whoopee!!!
11/13/08- 3rd post-op PSA 0.02 Undetectable
03/02/09- 1 yr. post-op PSA .09 Undetectable
05/13/09   PSA .18 (ouch)
Started IMRT June 13, 2009
Completed 37 treatments July 31, 2009 (66.6gy)
11/23/09 Post IMRT PSA .18
2/12/10   Post IMRT PSA 0.00


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/16/2010 10:07 AM (GMT -6)   
Zufus-- et al-- thanks I am reading this all day I appreciate your thoughts! I read alot about the sensitivity issues on the prostiscint but is there a better scan? Do some of you think scans are not needed? I will get that book you mentioned...
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 346
   Posted 2/16/2010 10:18 AM (GMT -6)   
Hey welcome aboard, can't add anything that has not been said. Just wanted to welcome you and keep asking questions. Great bunch of folks here. Keep us updated.
 
Neal
age 45
psa 3.09
Biopsy results 12/9
Left side base 3+3=6 21% 2/2 cores positive
Left side mid  3+3=6 100% 2/2 cores positive
Left side apex 3+4=7 88% 2/2 cores positive
Right side - 0/6
CT & Bone scan negative
Davinci Feb. 5th 2010/ cath removal 2/16
 
Gleason-3+4=7
Extent of tumor-Bilateral
Extraprostatic Extension-Absent
Seminal Vesicles-Negative for tumor
Surgical Margins-Rt apical margin positive
lymphovascular invasion-Suspicious in areas of capsular involvement
Regional lymph nodes-One node negative
 


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 2/16/2010 10:26 AM (GMT -6)   
Craig,
Zufus is correct. Prostascint scans are designed to pick up large tumors and your psa has to be in the 40s for tumors that large to appear outside the prostate. A much better scan is the Cambidex, which is only give in Holland, but again with a low psa and low tumor volume you would be wasting your money, and it would be your own.
If you really want to get more useful information about your PC I would recommend 1st a Color Doppler Ultrasound or 2nd and MRIS. These will at least tell you if you have extra capsular extension, and if the tumor is close to anything that may be hurt by surgery, or in a spot that has a high probability of a positive margin. Also a PAP test and a PCA3 test and even a plodiy. All of these will add to your information base. These later tests may indicate degree of agressiveness. Unless your psa is in the 20s the scans generally offered by most doctors are pretty useless.
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


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/16/2010 2:41 PM (GMT -6)   
Thanks guys-- Does anyone know any super experienced Da Vinci surgeons in Southern Calif?
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


craig10
Regular Member


Date Joined Feb 2010
Total Posts : 117
   Posted 2/17/2010 7:19 PM (GMT -6)   
I got a bit more info today--- 3 of 12 cores positive from the biopsy--- all 3+4=7 one 60% one 25% and One 20% I have a 20cc prostrate

I started the Prostiscint scan process today.
I have a second opinion appointment and the rest of the scan next week.
I am going to make an appointment tomorrow with a brachy guy and a rrp surgeon who is very experienced at University of California-Irvine--Thomas Ahlering MD.
While I am still reading and ordered the Sturm book, I am leaning towards robotic because of the increased options for salvage.

Does anyone have any input? Am I heading in the right direction?
age 55, married, kids and grandkids
2008 psa 4.7
2010 psa 5.2
biopsy 2-10 -- 3 of 12 samples positive ca
location rt apex
3+4=7
waiting for second opinion and prostascint scan and treatment... scared.


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6946
   Posted 2/17/2010 10:34 PM (GMT -6)   
two other books to read - Dr. Patrick Walsh's Surviving Prostate Cancer (there is a 3rd edition out this month Feb.2010, I read the 2nd edition) - brutally factual, my doctor thinks it borders on fear mongering, but still agrees it is worth reading; and Dr. Peter Scardino's Prostate Book - easier to read, a little less detail.
A third - For a survivor's point of view, Michael Korda's Man to Man. I didn't read it until after my DaVinci. Could have written the same book after the fact. A have to read.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/18/2010 6:10 AM (GMT -6)   
Craig do not be swayed to rush into any type of surgery quickly(or other choices), you need to look at all the modalities of treatments and understand them, and the risks/rewards trade offs. Alot of guys rush into surgery within 4-8 weeks of diagnosis and docs help them get there as it is well paying, and some uro/surgeon docs will do surgery on patients whom actually are canidates for W.W./A.S. because they can(you are not a candidate on that), inspite of the hypo-oath they take, the get it out I don't want PCa in me (great in theory not always so in practice).

It probably took 10-15 yrs or more for your PCa to show up on the radar (now), it usually is slow growing and usually in non-aggressive forms on majority of patients. So, you have more time than you are lead to believe in the majority of real cases. The land of PCa is full of inconsistencies, unknowns, imperfect sciences in many testings, subjective analysis of pathology and nomograms and Partin Tables statistical stuff based upon "averages" some are below the thresold and some above...you don't know for sure where you stack up...it is averages. All this wonderful stuff to consider for the decision of your life or quality of life thereafter.

Choices- flip a coin or analyze and education put in high gear and bring your 'A' game to this table. The choices become yours, you take ownership, the doc walks away and doesn't wish to take ownership of your consequences and really cannot do so if he wants to continue working without mental burdens upon themself, it is what it is. Also, you can do salvage scenarios even after radiation(s) and some other treatments, so surgery then salvage is not exclusive as you might have been thinking it was.

Ask your uro doc what he thinks about you getting a second opinion on your own, not a referral through the good ol boy network...that is not the best idea. Listen ever so closely to what is said and recommended, gives you an idea of what type of individual you have...patients need to interview and assess their practioneer, your money and your life and your choices. Even though some docs are full of themselves as Gods and all knowing and arrogant even, also some are wonderful too....so whom are you sitting in front of today???? I hope you and others get the righteous treatment, honesty, frankness that you deserve as a person.
 
Michael Korda has a tape on his surgery journey, that is worth listening to. The books mentioned on surgery are worth reading and Dr. Strums book has all modalities explained and patient cases, scenarios and more in that book, although it is time for update since publication.


Youth is wasted on the Young-(W.C. Fields)

Post Edited (zufus) : 2/18/2010 5:16:52 AM (GMT-7)

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