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KeyWestPirate
Regular Member


Date Joined May 2009
Total Posts : 60
   Posted Today 10:26 AM (GMT -6)   
First, thanks to ALL of you for making this site so informative and productive.  I've learned a lot since I found it several months ago.  HealingWell is heads and shoulders above the other sites I visit.
 
Second, I posed a question to my urologist that I know is of interest to the newly dx'd:  Can you visually see evidence of prostate cancer extension or invasion while you are in there (with the idea that this could influence what is taken out, i.e., nerves during the procedure)?
 
His answer was "Generally not, unless the tumor itself is visible, or there is significant PCa (more tumors) in the abdominal area or the lymph nodes are noticeably swollen".
 
What is significant about his answer is, and he concurred with the conclusion I immediately drew,   the judgement as to what they are going to take (or more importantly leave) is made pre-op, based on a complex equation that includes age and patient preference, but mostly based on Gleason and PSA numbers and the biopsy.
 
We all know that the Gleason score varies, and we also know that the biopsy is somewhat hit or miss (literally).  While we want ALL the cancer out, we also want to preserve the erectile nerves.
What's the solution?  A biopsy with more cores as someone has suggested?  The discomfort associated with a longer biopsy (which could easily be addressed with pain medication) might be a fair trade-off.  A second pathologist's opinion might produce a more exact staging.  In hindsight, we can all look back and describe what we could have done better.  Our insights provide guidance to the newly Dx'd.
 
Not only is choosing your treatment provider very carefully of utmost importance, it's obvious that you need to communicate very clearly with him. 
We're all Monday morning quarterbacks here, this is not as easy as it initially seems   . . .  there is a reason for med schools.  That said, you are still responsible for charting your own course and the consequences of your decisions  (or lack thereof).
 
FINALLY,   I had another undetectable PSA test, 8 months post op.  Am I out of the woods?  Maybe, but I immediately scheduled another PSA in 3 months.  Enquiring minds want to KNOW. 
 My testosterone is 680 with no supplementation.  I've recovered about 80% of my pre-op erectile function  (I no longer worry about it, that seems to help most of all), and I was dry the day after the catheter was pulled.  I'm at a good place in my life  -moving on.
I'm thinking of changing my name to  IdahoPosterBoy   -does it get any better than this???  I fervently hope that all our new visitors have my great results. 
But, you New Guys, YOU HAVE TO WORK AT IT!
 
 
Dx'd June2008,  Gleason 6,  PSA 6.5,  Prostate 89 grams,  PSA number 6-7 for years due to BPH,  free PSA number drove biopsy
DaVinci RP Nov 23, 2008 by  Dr Todd Waldmann, Boise  Dr Waldmann was my second urologist, I'd be sitting here with a limp dick, in diapers,  if I'd stuck with the first urologist.
 Nerves spared, erectile rehabilitation program w/ viagra first, then cialis w/ 3 x weekly VED  started immediately post-op  (began pumping at 3 weeks)
Up and walking immediately post-op (Walk a mile before you go home-big incentive)  Pain free, some tenderness, released at 3 wks to normal activity including intercourse.
Dry the day after catheter was pulled, some erectile ability at 3 wks, steady improvement, used ED med and pump until recently.  Still use daily ED med.
 
 
 
 
 

offpsa
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted Today 10:43 AM (GMT -6)   
I had a biopsy done in my little home town, then when bad news came I took the slides to the big city and they read them...same bad news, but they also said "they see no cancer outside the gland".
How did they come to this ?  I figured it was because they could see cancer in the ultrasound picture.

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4235
   Posted Today 10:52 AM (GMT -6)   
Key West,
There are a lot of things one can do to improve the staging prior to having a treatment:

A color doppler can see any agressive PC and it's exact location and a targeted biopsy can confirm. This is much better than a standard biopsy and I think more beneficial than a prostate mapping. The mapping may find indolant cancers whereas the doppler will find only agressive ones.
An MRIS can indicate if the tumor has penetrated the margin or is along the margin. Just be sure it's with a Telsa 3 machine not the Telsa 1.5 that many institutions use. An MRIS has difficulty in seeing transition zone tumors, color doppler can easily spot them.
There is also MRI fusion and an MRi which injects dye for a better look at the prostate.
blood tests like PAP and the PCA3 urine test can indicate the agressiveness of the PC and Plodgiy analysis can also identify agressiveness.
Most urologists are not familiar with these tests or just blow them off as unreliable. To me they provide one with much more information on which to base a sound decision.

JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DX BPH and continue to get biopsies yearly. Positive Biopsy in 10-08, 2 cores of 25, G6 less than 5%. Scheduled Surgery as recommended.

2nd Opinion from Dr Sholtz, an Oncologist said DX wrong, path 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. G 4+3 approx 2.5cm diameter.

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.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and burining urination. Daily activities resumed day after implants.

Scheduled for 5 weeks IMRT in July

JohnT


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted Today 11:35 AM (GMT -6)   
Keywest,

That was a good and helpful posting there, one worth saving and remembering.

It is an important point, we with PC are not victims, we may be patients, but not victims. We have to be pro-active at every stage, including pre-dx, dx, treatment choices, recovery from treatment, post treatment issues, and even salvage treatments if ever needed.

Being married to a nurse, I understand what it means to be a compliant patient. There are those that go to doctors, get good advice, treatment options, meds, etc, and the like mules, refuse to listen to sound advice. They get charted simply as AMA, against medical advice, and the doctor moves onto the next paitent. My own 81 year mother is in this category, and it makes it hard for any of us to work with her.

For those new to all of this, the doctors, specialists, treatment centers, hospitals, etc, are suppose to be working for you, you and/or your insurance is paying for it. Get the best doctors, the most experienced ones you can find and that your coverage or resources can afford.

And most importantly, constantly ask questions, no matter how silly you think they might sound. Doctor's aren'ts gods, they put his/her pants on the same as you. Take a note book with your questions all in order. Write down the answers. Bring a mini recorder with you, and tell the doctor you want to tape the conversation for your own use. Ask, ask, ask, until you are completely sure you understand. Bring someone with you, if you are not good at this part, doesn't hurt to have a second set of ears and eyes.

A good doctor will never be offended if you seek a second or third opinion, and often will even reccomend it.

As far as getting info off the net like we all do, or we wouldn't even be here, is to remember everything you see or read isn't 100% accurate or factual, no matter what "big" name is behind it. There is a lot of dilution and deception on the net. I use the information I find on the net to cross check things that my doctors tell me. More often than not, the information is the same, especially if you use doctors that really keep up in their field.

When you have cancer, any kind of cancer, you have to get the mind set that you are #1 perhaps for the first time in your life, you have to watch out for you first. I know that my wife of 35 years loves me 100% and that as a nurse she has a good general understanding of my situation, but she would be the first to admit that she doesn't know 1% what I have learned about prostate cancer in the past 18 months or so.

Be pro-active, newly dx. brothers of the PC, its your life and your body, and your peace of mind.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted Today 12:12 PM (GMT -6)   
Key,
First, congrats on the zero...That to me is the best point you made. But that certainly doesn't take anything away from your great post and sage advice for any newcomers. We do have another great story in Idaho in Barry, but if you want to make the change, you might also want to put your former name in your signature. This way folks know your background a little better.

Thank for your post, and great job on the zero....

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 7/17/2009 1:09 AM (GMT -6)   
Hey Key,

I'd love to have another Idaho handle on the forum... go for it!

Congrats on your great surgery results!

All the best,

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1

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