call from doctor about biopsy...

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twotall
Regular Member


Date Joined Nov 2009
Total Posts : 38
   Posted 12/3/2009 11:51 PM (GMT -6)   
 
 On 1/14/09 I signed up on this forum and had several questions concerning a very fast rise in my PSA level.  A very brief history which shows why I have become much more aggressive concerning what doctors tell me.
 
PSA test about a year ago 9.4.  Doctor said no cancer, your problem is prostatitias.  Started meds. for one month.  After a month the doctor called and said I think that you may have cancer, psa level now 11.4.  Did 12 needle biopsy.  No cancer found.  Started more meds.  Six months later another PSA test came back 15.9.  Doctor started more meds for a month, psa now came back 20.  Doctor told me that he would just about bet that I didn't have cancer but a bad case of prostitatias.
 
I finally said enough is enough and made an appoinment at the Mayo Clinc in Phoenix.  Doctor did an exam and said that prostate felt fine and that meds. were all that I needed.  I told him that I wanted to know why the psa was so high.  He finally agreed to the flow test, blader scope and and another biopsy, 18 core this time.  Blader scope showed a very enlarged prostate (front part) and infection at the blader opening.  These folks are fast, they did everything in one afternoon, with the biopsy reports within 48 hours.
 
I finally received a call about five hours ago that he found cancer in one area of the prostate.   While in shock, I did ask about the gleason score (thanks to this forum I had some idea what it means)  He said 3+3=6.  I didn't think to ask about anything else at that time.  He did indicate that he thought my high psa could be caused by the enlarged prostate.  What got me on this is that everyone who has checked my prostate always said it was not enlarged and felt fine, while the upper part was indeed inlarged.
 
He said that the cancer score was low but he was concerned about the high psa levels.  He indicated a bone scan and ct could be done.  My question is:  At what psa level will these tests show if the cancer has spread?  That is my next main concern.  If I knew the cancer was confined to the prostate I would have it removed as soon as possible.
 
Any thoughts or suggestions would be appreciated.
 
Bob

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/4/2009 12:58 AM (GMT -6)   
Wow, a tough journey and you haven't even gone anywhere yet. It is not too surprising that a DRE didn't catch the front part of the prostate since the doc only gets to feel the back. (Yeah, I know it feels like he wraps his whole fist around it)

So where are you? A PSA of 20, one core out of 18 (or out of 30) positive and an enlarged prostate. You don't say how old you are and that gets to be an issue since all prostates grow with age. No matter what your age you have a lot of time and a lot of choices.

You need to get your doctors to lay out your options. For example, use hormone therapy to shrink the prostate and then use seeds. and of course surgery is also a possible choice. You have already embarked on a path of learning and asking questions and that will see you through -- this da*med PC can act in so many different ways that each appearance is its own puzzle
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


Colin45
Regular Member


Date Joined Feb 2009
Total Posts : 216
   Posted 12/4/2009 1:02 AM (GMT -6)   
You would not be able to have the prostate removed till about 4 to 6 weeks after the biopsy so you do not have to rush to do anything as for worrying about the doctors checking the prostate I had 3 doctors check mine the first one checked it at three different times and found nothing the second found 2 lumps and the third only 1 lump
 
 
Age 64 From UK now in Thailand Baby boy born 2/14/2009
First PSA was showing 9.73 on 1/21/09.   on 5/7/09 PSA 9.78  Free PSA 0.83   Free:Total  PSA 0.08 
1/28/09 Biopsy carried out 12 core results show no adenocarcinoma
5/15/0924 Core biopsy results Gleason'S Grade 3+2=5
Involving approx 30% of one out of 12 cores on each side no perineural or angiolymphatic invation identified
One side PIN High Grade Bone scan clear 
Open surgery 7/27/09
Prostate Gland weighting 34 grms lost one nerve bundle
Gleason upgraded to 3+3 Tumour not close to prostatic capsule Seminal Vesicles not involved by Tumour 6 Lymph Nodes negative for Malignant cells
First PSA Nov 2009 was 0.06 Continence 99% occasional stress dribbles no ED from first day after catheter removed


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 12/4/2009 5:26 AM (GMT -6)   
Hey Twotall
You'll see my stats are close to yours. When my first PSA came back at 17 my GP put me in Cipro - obviously a case of protatitis as he, too, did not feel anything - "maybe a little firmness". A few weeks later the PSA was 22. Oops!
Biopsy, 6 weeks delay to let it heal, DaVinci, and 4 months later the PSA is 0.04. Alive and well in wet underpants.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 12/4/2009 9:23 AM (GMT -6)   
Well, as unsettling as it is to hear the doctor say "You have cancer", there is some relief in knowing what is going on.

If there is good news, the G 6 is certainly better than 7 ,8, or 9. Now you can set about figuring out what to do.

Good luck. Sorry you are joining us, but you are in good company here.

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 injections


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 12/4/2009 10:03 AM (GMT -6)   
Doctors - can't live with 'em, can't live without 'em.
 
After much experience, I now believe that the best technique for dealing with anyone in a white coat is to follow Ronald Reagan's advice: "Trust but verify."
 
Zen9
No family history of PC.  PSA reading in 2000 was around 3.0 .  Annual PSA readings gradually rose; no one said anything to me until my PSA reached 4.0 in September 2007, at which point my internist advised me to see a urologist.   
Urologist advised a repeat PSA reading in six months = 4.0 .  Diagnosed May 2008 at age 56 as a result of 12 core biopsy.  Biopsy report by Bostwick Laboratories = Gleason 3 + 3. 
Interviewed two urologists - the one who did the biopsy and another - the latter had the biopsy slides re-examined = Gleason 3 + 3. 
Then went to M. D. Anderson Cancer Center in Houston in July 2008 and met with a urologist and a radiologist.  Biopsy slides re-examined yet again, this time by MDA's internal pathology department = Gleason 3 + 4.   
Chose da Vinci surgery over proton beam therapy; surgery performed at M. D. Anderson Cancer Center on August 15, 2008.  Post-operative pathology report = four tumors, carcinoma contained in prostate, clean (negative) margins, lymph nodes clear, seminal vesicles clear.  Gleason = 4 + 3. 
Minor temporary incontinence; current extent of ED uncertain due to lack of sexual partner; refused treatments for ED as being pointless under the circumstances. 
PSA readings: 
November 2008 = <0.1 ["undetectable"]
June 2009 = <0.1   
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 12/4/2009 10:47 AM (GMT -6)   
Zen- exactly my mantra on this forum, all experts????

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 12/4/2009 11:09 AM (GMT -6)   
Twotall,
Most doctors know very little about PC and how to diagnose and stage it. You've already experienced this with conflicting opinions. I went through 10 years of this before I found a couple of doctors that really understand how this disease works and were skilled enough to provide a correct diagonosis.
Dr Lee in Rochester Mi, Dr Scholz in Marina Del Rey Ca, Dr Bahn in Ventura Ca,
Stephen Strum in Ashland Ore, Dr Myers in Earlysville Va. are all well qualified to evaluate you. There are certaintly others, but these are the best.
Right now you have a very high PSA with a very high velocity that puts you into a very high risk catagory, and you don't know what's causing it. Seeking treatment without knowing the exact cause is just asking for an unfavorable outcome. If you just had a G6 with a low PSA that would be one thing; but your PSA and PSA velocity suggest you need the help of a specialist to really understand what is causing it.

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


medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 12/4/2009 11:43 AM (GMT -6)   
John T has a good list of leading experts. There are others (including both urologists and oncologists) who I would personally put in the same category in terms of CaP expertise, so you have some options depending on, among other things, your geography, financial resources, insurance, etc. Some I would add to the list are: Scardino and Scher at MSK, Logothetis at MD Andersen, Sartor at Tulane, Carter, Partin and Eisenberger at Hopkins, Klein at Cleveland Clinic.
Age 45.  Father died of p ca. 
My psa starting age 40: 1.4, 1.3, 1.43, 1.74, 1.7, 1.5
 


kodiak
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 12/4/2009 5:59 PM (GMT -6)   
TO TALL,

My uncle had a PSA of 246 6 yrs ago and the cancer hadn't spread .To this day I have never heard of a score that high.

Charlie
Age 52
PSA4.5
Gleason 6
Robotic surgery Oct29, 2009
Pathology margins good
1 week off cath 1 pad per day
St Clairs hospital, Denville NJ
Dr Colton
Flash up date! Nov 21,2009 50%hydralics back useable erection 1st time woo hoo!

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