Glad I found you guys; but sorry I found you guys

New Topic Post Reply Printable Version
33 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 8/22/2010 9:04 PM (GMT -6)   
I surely hope everyone found the humor in my subject title. This is a great forum, but I wish I were not here. (you too huh?)
I'm 57, 6 2", and at the time of first doc appt, I tipped the scales at 227. I'm now 202 and still dropping. Lost 25 lbs in less than three months by just stopping the sweets and significantly reducing fat intake. No more rocky road for me. Uro doc said to eliminate all animal products that "might" have been fed hormone growth factors, and to eliminate all dairy - period. Free range chicken is okay, as well as venison. We buy chicken that is stamped - 'no hormones used in the production of this product'; Aside from that I'm almost vegan now.

So, I've got a wicked case of PCa. I'm now 4.5 weeks post op (rrp). My journey started out with an annual physical where my family doc did the routine blood work, and noticed that my psa was up to 3.07 this year, from 2.26 last year. DRE was negative. As I've learned, my velocity is an eyebrow raiser. So, I asked for the free psa test, which came back at 18%. Still gray area. But I was concerned enough that I made an appt with my urologist. He repeated the DRE, and immediately felt a nodule. Sooooo, he set me up for a biopsy.

Biopsy was ugly. 7 of 18 cores were positive ranging from just under 5% to 60% adenocarinoma, mostly on the right side, with one 5% on the left. Highest Gleason was 4+5=9. My uro doc has performed over 2000 rrp's and averages 60 to 80 a year. He flat out told me to not allow anyone to talk me into any form of radiation for my situation. I did not understand that at the time, but after conferring with a top oncologist, it made more sense. With a G 9, I'm at a high risk for re-occurance, so let's save the radiation bullet for if/when needed.

So, it's off to surgery we go, which was done on July 21, 2010, and catheter removed on Aug 5. At this point, I'm 98% continent. The only thing I liked about the catheter was that I could drink a great big glass of ice water right before bedtime, and not worry. At this point, I only dribble a tiny amount when I cough, sneeze or lift something from an awkward position. My uro doc also was not in favor of the nerve sparing, which troubles me a little, but it is what it is, and at this point I'm 100% ED. Mr Happy is now a sad little critter with only one use.

Next step is back to uro doc on Sept 3 for six week post op psa, and first shot of lupron which I'm NOT looking forward to. I'm a pretty high energy kind of guy, and spend a lot of time working in my shop and in my garden. Wife and I just finished our retirement home - moved in first week of Feb, and I've still got a lot of yard projects to do. (4 acres in country - new kubota tractor he he) Just waiting on cooler weather to start tackling projects, and I'm worried about lupron shutting me down. We'll see. I sure would love to hear the experiences of others with lupron.

oh yeah; post op pathology - still 4+5=9. Negative lymph nodes, negative seminal vesicles, negative bladder neck, and negative surgical margins. I think everyone was surprised that it was contained. perineural invasion was extensive. PT2c N0MX.

prostate was 4.5 x 4 x 3.5 and weighed 32 grams

If I've left anything out, just ask away. Otherwise, the above is more information about me that I ever wanted to know.

Although my wife is a couple years older than me, she presents herself much younger, and is still a beautiful woman and extremely supportive. My two children and grandchildren live within ten miles, and I desperately want to watch those grandbabies grow up.
As soon as I finish this long list of yard projects, I really do want to take grandson fishing.

Anyway, I would appreciate any and all opinions on my situation, and treatment plan. We're still hoping and praying for a good prognosis and a long life. But that's really not in my control is it?

I hope each and every person on this forum has a great week.

k

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3891
   Posted 8/22/2010 9:16 PM (GMT -6)   
Your journey sounds great so far and I love your upbeat attitude but I don't understand the HT (Lupron) at this point..The idea for the surgery was to CURE you and it sounds like it did. Has your doctor explained why he thinks this is necessary?
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 8/22/2010 9:18 PM (GMT -6)   
kbota
- very glad you found this place - it can be a wealth of support and information
- you seem to have your act together and coping well -
-wishing you and your family all the best and have a great week.
BRONSON
Age: 54 -gay with spouse, Steve - live in Peteborough, Ontario, Canada
PSA: 10/06/2009 - 3.86
Biopsy: 10/16/2009- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/2009
Pathology: pT3a- gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
Post Surgery-PSA: April 8, 2010 - 0.05 -I am in the ZERO CLUB - hooorah!
Next PSA: October 8, 2010 -TBA

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 8/22/2010 9:21 PM (GMT -6)   
Hey k, I've always wanted a kubota tractor to roto-till and snow blow and all that fun stuff. I do envy you that tractor and retirement at 57. I'm 11 years older than you and still showing up at work. Not everyday mind you, but too often.

Now that the important stuff is out of the way, onto the really important stuff: welcome. Glad you're here and sorry you have to be here.

We've got some members here who know more about PCa than most uros and you'll be hearing from them. And, I'll be watching with interest to see what they have to say.

In the meantime enjoy the fishing with your grandson. I write from our cottage on Lake of The Woods in far western Ontario Canada and I've just been down to the boat house to check out my fishing rod and the 'tin' boat (aluminum actually, but it's always called the tin boat) and I'm giving some thought to doing a little fishing myself tomorrow. It's GFMPH. And, as you'll discover here, GFMP means Good For Men's Prostate Health, and GFMPH is what we tell our wives as in, "I hear a 500mm lens for my camera is GFMPH," or, "You know that attachment fot the Kubota I've been wanting? Well I just learned it's GFMPH and so I'm off to the dealer to get it." Very handy GFMPH is. I use it for rum and coke every evening.

I wish you well, k, and I look forward to your future posts here.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

DS Can
Regular Member


Date Joined May 2009
Total Posts : 195
   Posted 8/22/2010 9:25 PM (GMT -6)   
Welcome k,
From the detailed information that you provided I assume that you have been checking in at healingwell for a while.  Your Uro visit next month should give you some indication of how the surgery went, but the 3 month or 6 month psa checks are more telling.  Having projects around the new home will keep you active and the mind thinking about things other than PCa.  Enjoy the family every day.  I wish you all the best in your recovery from surgery, keep healing.
Dan
PSA Jan'07:1.2,  Jan'08:1.9,  Jan'09:2.5
BIOPSY Feb'09  PCa DX, age 52
Right: 3+3=6, 3/6 cores 10% involved,PNI-Y
Left:  3+3=6, 1/7 cores <5% involved,PNI-N
LARP April 9,2009 nerve sparing. Final pathology:
GS 3+4=7, Margins uninvolved, 2 lymph nodes negative
Catheter 8 days, Last pad May 2,2009
latest PSA: April 8,2010 <0.1
 
 

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3988
   Posted 8/22/2010 9:25 PM (GMT -6)   

k -- how long will you be receiving lupron...two years?  i'm not going to jive you lupron can shut you down.  i spend more time "nesting" these days and i dread work more than usual tho i work very little anymore.  i have a difficult time pursuing hobbies and passions like photography and travelling ... tho we did lock in a trip to maui last night for december cool .

here's a good blog to read by a writer at the NY times who has PC.  make sure to check out "my brief life as a woman" ... Dana Jennings - Well Blog - NYTimes.com

good luck!

F8 


age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IMRT

Post Edited (F8) : 8/22/2010 8:37:33 PM (GMT-6)


kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 8/22/2010 9:39 PM (GMT -6)   
"The idea for the surgery was to CURE you and it sounds like it did. Has your doctor explained why he thinks this is necessary?"

Hello Mr Fairwind. We meet again (I'm Bentley from cancerforums.net) Trust me, the upbeat attitude is something I really have to work at. I couldn't do it without my dear wife. I assure you that two months ago, I was lower than a snakes belly.

Your question is a good one, and I've asked uro doc the same thing. Here is his answer which he was good enough to put in simpler laymans terms for my benefit; " All of our cells have a finite life which varies somewhat depending on cell type. PCa cells are primarily fueled by testosterone, so,....if we remove the PCa cells source of fuel, then hopefully, the cells will die off and not come back even after the lupron is stopped. Since your PCa was contained, two years of lupron should be of huge benefit in that regard." My uro doc has explained to me several times about how PCa spreads; 1. via lymph node system, 2. via extra prostatic extension into surrounding tissue, and 3. via the blood. Since my surgery, we have eliminated #'s 1 and 2. The lupron hopefully deals with #3.

I sure hope he's right.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 8/22/2010 9:48 PM (GMT -6)   
Kbota, What a great name. I knew what you were going to say. Kubota tractor what a great toy.

Nice blog and best of luck with treatment and recovery.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3891
   Posted 8/22/2010 9:56 PM (GMT -6)   
"I sure hope he's right."

He very well may be...But even the doctors disagree...Mine agrees with Dr. Walsh that some PC cells, usually a very small percentage, are hormone independent right from the start and HT has no effect on them....This percentage varies from person to person so HT is more effective in some people than in others..But it is never curative..

I bet your doc has found that this treatment profile has improved his outcomes and the side-effects are worth the benefit delivered...You can't argue with that...
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

eyetat
New Member


Date Joined Aug 2010
Total Posts : 5
   Posted 8/22/2010 10:11 PM (GMT -6)   
Thanks for sharing Just starting my journey I also am opting for the surgery and save raditation for a back up or latter on in life.
PSA
11/09-3
12/09-3.5
7/10-4.75
8/10-4.6
Gleason score 6
lt lobe 2of5 C
rt lobe 4of5 C

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6074
   Posted 8/22/2010 10:41 PM (GMT -6)   
Why not just wait till yo have the reoccurance your uro is so sure you will have, before you get additional treatment. A flag would have gone up for me when he did'nt even consider nerve sparing. If I thought you had the knowledge about the disease and yours was an informed consent, I wouldn't say anything. Looks to me like a case of trusting the good old uro/surgeon. I'll proly get slammed for saying it , but there it is.
age 67 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of Washington Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci, extensive PNI, That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " Francois de la Rochefoucauld, source courtesy of Tatt2

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/23/2010 8:01 AM (GMT -6)   
With Logoslidat and have questions about such and would have alot to say on such, some of it you wouldn't like to hear. Simple advice in PCa...question everything all the time (experts???? even they disagree), get second opinions maybe even right now before taking the Lupron, see an onco-doc or radiologist for their thoughts?
Lupron and drugs will mask you real psa post surgery perhaps for a few years, is that good? Makes someone else look good automatically. You decide or search the answers.
I questioned things in my PCa journey, and very glad I did, found errors, agendas, and other things that cause expletives to flow faster than urine (lol). Not all cases are the same of course.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 8/23/2010 9:03 AM (GMT -6)   
"Why not just wait till yo have the reoccurance your uro is so sure you will have, before you get additional treatment."

I've seriously considered this, but I keep coming back to my high gleason score of 9. What if I have this one chance to kick the PCa's butt for good, and I pass on it? I'm scared carrpless either way I go.


"A flag would have gone up for me when he didn't even consider nerve sparing."

This does bother me. Especially when he got in there, and the cancer was confined to the capsule. My opinion waffles somewhat between "he was taking the conservative approach to save my life in light of the gleason 9" vs "He was reimbursed by insurance company the same $ whether he saved nerves or not, and saving the nerves takes another hour or so." I would sure hate to think that, but it has occured to me.

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 495
   Posted 8/23/2010 9:14 AM (GMT -6)   
Regret nothing. Move forward. Your surgery had risks and you accepted them. Today is forever, tomorrow a dream.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6074
   Posted 8/23/2010 10:23 AM (GMT -6)   
I wouldn't regret anything, but would get other opinions about hormone therapy at this point. Thats just a protocol I 've never heard of. Maybe your uro is on to something. I hadn't thought of Zufus point about masking any real psa rise post-op. Don't see how it will " take care of the 3rd route, " Don't believe Uro is being unscrupulous at all, just would really question the protocol. If the " Adjuvant treatment" sit well with you after learning more about it go for it. My Uro totally dismissed nerve sparing, with a you can get used to anything attitude, its better than dying. I like him and go to him for follow up but had surgery elsewhere and had 1 nerve spared. Even with the new surgeon who told me up front that he would only spare one side since biopsy indicate most was on the right side, I still felt he could have made the decision once inside, { maybe he did}. Point is trusted his knowledge on this point and went for it. I have no regrets on that. It was informed!! I would get other opinions, talk to uro about them, if he is not happy with that from you a red flag goes up for me. Heck since you are willing to go hormone therapy from the jump, don't and get ultra sensitive psa testing and with good prostate oncologist decide if and when treatment is needed. Side effects are real and may not even be nesearry in this case.
age 67 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of Washington Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci, extensive PNI, That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " Francois de la Rochefoucauld, source courtesy of Tatt2

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 8/23/2010 3:39 PM (GMT -6)   
The PCRI recommends combination therapy, that is HT and surgery, or HT and radiation for all high risk patients. There is a high probability for high risk patients that PC cells have escaped and HT is a way to deal with these cells while they are still few in number and have not yet had the chance to mutate. The only thing I would add is Casodex and Proscar or Adovart to the Lupron to insure a complete chemical blockade as this is what is required to kill these cells.
I know there is disagreement among doctors on this, but I would go with Strum, Myers and Scholz on this one.
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


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 8/23/2010 4:26 PM (GMT -6)   
Hey Kbota
Welcome to HW.
We share the same git 'er done date, only a year apart. Don't look at me to be your guide or inspiration. I, too, have a one trick pony in my pants and even that is not done well - l leak faster than an old B7100 HST tranny.
I won't discuss the PCa or it's treatment - smarter guys than I have radically different opinions (see above).
I will say start trying to walk down the Pills, pump, prick road. If the pills and pump won't do it, relax. With a little kickapoo joy juice injection you can be a po*n star again.
Good luck to you. (And remember to use the GFMPH ploy early and often.)
Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%. 8/9/10 Now at 0.24 still 90%
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. "There must be another issue."
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 "Short sphincter"
7/15/2010 one year: 2 pads per day. 140 ml/day, dry in bed.
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04
1/14 6 months - 0.05 (Siemens Centaur)
4/14 9 months - 0.04 (Siemens Centaur) and <0.01 (Roche ECLIA).
7/12 1 year - 0.03 (Siemens Centaur, direct chemilum); <0.01 (Roche Cobas 601 ECLIA)

kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 8/23/2010 5:16 PM (GMT -6)   
Hey everyone! Well, I had an interesting phone consult with my prostate cancer oncologist about an hour ago. He asked me to read him every word of the path.
He is with you guys and recommends that lupron not be used at this point. His recommendation is to check psa at least every other month for next two years, and watch closely. His concern (and I think john or fairwind mentioned this) was that the lupron might mask a rise in psa which could work against us in the long run.
Onco asked me to fax him my surgical path report which I will do in the morning. I've emailed him and asked him to contact my uro.
I sure would like those guys to be in consensus. (fat chance huh?)


We'll see, but this will be the top of my "to discuss" list when I see the uro on 9/3.

I sure appreciate you guys. Ya'll got me to thinking last night, and I decided it was surely worth a phone call to the oncologist. (After all, he was recommended by my uro - so, what can he say?)
I'll report back as soon as I know anything else. Untill then, Ya'll keep up the fight.

k

tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 495
   Posted 8/23/2010 6:11 PM (GMT -6)   
K:
Forget the uro. His work is done. Your onco is the guy for you. His attitude and decisions work. If any further treatment is necessay it will not be by the uro, therefor move on.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 8/23/2010 6:29 PM (GMT -6)   
K,
I know how you feel about life with permanent ED. I had my nerve bundles removed because of the high Gleason. I hope you get good results on the PSA test. Why are you schedule to get a Lupron shot?
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm in circumference.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 5 months
2 months PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1
11 months PSA test 1/21/10 result 0.004
14 months PSA test 4/19/10 result 0.005

julios
Regular Member


Date Joined Jun 2010
Total Posts : 38
   Posted 8/23/2010 6:38 PM (GMT -6)   

Hey there, sorry to hear you are like the rest of us. See below for my situation. Yeah, mine was even worse. I will start radiation and ADT in a couple weeks, probably followed by chemo. There is no doubt RP was the right way to go in my opinion. As for nerve sparring, I wouldn't worry about whether or not some could have been sparred without risking reoccurence. Most likely you would have had some level of ED anyway, as I now do, and from the research I've done, an implant is going to produce the best erection of any of the options (injections, pumps, etc). In fact, I hear it will be like you're 17 again!

 

Best wishes


Age 52

At Diagnosis of PCa, had Gleason 9 and normal PSA

Radical Prostatectomy on July 7th, 2010 by Dr. Fagin using daVinci

25% to 50% nerves spared on left, 100% spared on right.

Continent from day one.

Pathology showed postive margins and extension beyond gland, including seminal vesicals and lymph nodes. Stage upgraded to T3b.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3891
   Posted 8/23/2010 7:20 PM (GMT -6)   
After surgery on high-risk patients, the standard adjunct treatment is radiation, IGRT...Radiation CAN produce a cure, HT can not. It's as simple as that..

It's truly amazing...This PC treatment business, it's like the wild west...Everyman for himself..
Age today: 68. Married, 6', 215 pounds, active, no health issues.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 8/23/2010 7:28 PM (GMT -6)   
Yeah I mentioned (masking psa's) and to get that second opinion from an onco or rad doc, that was fast with a phone call. Gee.....what a revelation, not a real surprise to me. Did like that you made that call, now you know to question anything and everything, look for the reasoning.  yeah     Since they are friends I am seeing a yield sign and Lupron in your future, ask doc thereafter...how about zoladex or even casodex.  No difference in effectiveness with zoladex, however the profit margin is much lower. There are no profits on casodex at the doc level, it is a pill Rx.
 
Maybe you should get the drugs with surgery, full disclosure from all angles should be known to you in fairness.  Don't ask about other drugs, they will not mention anything other than LHRH  types mentioned herein or casodex(flutamides).  It is rare to see uro-docs prescribe ADT3 with avodart or proscar to Lupron-casodex idea. 
 
Some patients have by passed surgery and do ADT3 per Leibowitz protocol...sounds insane but might not be all that insane..Rick K is at year 15 right now, no PCa found on new biopsies. Normacly as a man, can still do any treatment.  Go figure.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35 normal, ct and bone scans appearing clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off for 1 yr., controlled so well, resumed, using intermittently, pleased with results

Post Edited (zufus) : 8/23/2010 7:09:00 PM (GMT-6)


kbota
Regular Member


Date Joined Aug 2010
Total Posts : 487
   Posted 8/23/2010 8:58 PM (GMT -6)   
Well, I received an email response from my PCa oncologist. In quotations below is a copy and paste of his response;

"Thanks....My suggestion is frequent PSA checks but the hormonal therapy may obscure a PSA rise and I would not do that....if you have a PSA rise the only thing to do that is curative is radiation to the pelvis and hope you get it....I use radiation + hormones but that is experimental."

Thoughts? opinions? critiques?

At this point, I'm seriously, seriously considering a third opinion from either MD Anderson in Houston, (because they are close) OR, flying up to Johns Hopkins.

Somehow, I have to get off this fence and make a decision so I can move forward with whatever remains of my life. Dang, but that Gleason 9 scares me.

k

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3988
   Posted 8/23/2010 9:09 PM (GMT -6)   
k -- i wish you the best.  here are a couple cases that may interest you.
 
 
 
F8
age: 55
PSA on 10/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
ADT, brachy and IGRT
New Topic Post Reply Printable Version
33 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, September 20, 2018 11:22 PM (GMT -6)
There are a total of 3,005,328 posts in 329,217 threads.
View Active Threads


Who's Online
This forum has 161771 registered members. Please welcome our newest member, Sandy1222.
261 Guest(s), 6 Registered Member(s) are currently online.  Details
bobmars, TiitFromEstonia, Kent M., TheSunEone, Sandy1222, mufjem