consultation and still questions

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Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 9/22/2010 9:19 AM (GMT -6)   
Good morning all,

We did have our followup with the urologist who did the biopsy. Can't say that we learned much new. Apparently our request to have the slides read by a different pathologist was never processed, so we didn't have new information to go on.

I did ask about the prostate size in cc's, and was told 21. Guess that's good. I forgot to mention earlier that the DREs have all been normal. The doctor said Carter's 6.7 PSA was still considered to be low, but didn't discuss the rate of rise (velocity?) over the past couple of years.

He had no answer as to why only six cores were biopsied other than to say there is controversy regarding the appropriate number, and the size of prostate comes into play in the decision. He said the high grade PIN was just there because of the tumor, but when I pointed out that the PIN was found on the OTHER side, he just nodded. He did say that the presence of the PIN should not be a factor in the treatment choice.

He said there is no evidence of perineural invasion (how can he tell?), and that the 20% figure of malignancy found in the biopsied material means that the tumor is small. He said we don't need to worry about taking as long as three months to begin treatment.

It looks like our choice will be between robotic surgery and radiation. Carter is leaning toward radiation at this point. The doctor said it would be equally good, but when I did the Partin tables, I came up with a 78% progression-free probability for brachytherapy in five years, versus a 93% probability with surgery. I can't remember now whether that computation was based on BT alone, or a combination of BT and external beam. This urologist didn't seem convinced that a combo was better, but considering the fact of the Gleason of 7, that is probably the only way to go.

So...much to consider. We will go with the suggestion to see a radiologist and let HIM decide if Carter is a good candidate for radiation, and if there is a doubt we'll start looking into the surgery. We are less enthusiastic about surgery than most because we know surgery can come with unexpected consequences and complications. It has happened to me, and has had far reaching effects on my health and quality of life.

I have to say, though, that the numerous accounts on here of post-path reports containing more diseased tissue than predicted really worry me. I have so many concerns about either approach.

Didn't mean to write a book! I'll keep you posted, and will continue to follow your stories and wish you each much luck!

Juliet

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 9/22/2010 9:35 AM (GMT -6)   
Thanks for the update Juliet.

I really think this is the hardest part of this disease...figuring out a treatment choice. Everyone is different when it comes to treatment, thus we are left with trying to figure out what impact each type of treatment will be for us individually. Problem is, just because one person had a success...doesn't mean you will and vise versa...one persons failure doesn't mean you will fail.

Good luck and keep us informed on the next step in your journey.
You are beating back cancer, so hold your head up with dignity

Les

Signature details in Sticky Post above - page 2

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 9/22/2010 10:07 AM (GMT -6)   
A 21cc prostate is small and may have something to do with how many biopsy needles can be aimed into it. The shape of the gland is also relevant as the biopsy can only aim from one direction.
There are also all sorts of places round the prostate that the uro does not want "stab" with the biopsy needle.

Good to hear that you have a uro who has told you that you have time to think about what to do next/first

Perineural Invasion (PNI) refers to the growth of a tumor along the nerve (perineural) branches of the prostate gland. This path may act as a highway, allowing the tumor to escape outside the confines of the prostatic capsule. If it has not been detected then it suggest that there were some bits of nerve tissue in the biopsy sample that were clean, but it may also be one of those things that goes down on a report as a "zero" simply because it was not tested for. The rule here as with all this aspects of PCa is that if you are in any doubt about what he meant ask him to clarify things.

(As a comparison I believe lots of us get an MX on our staging rather than an MO. MO means mets were tested for and not detected, MX means they were not tested for.)

Alf
Born Jun ‘60
Apr 09 PSA 8.6
DRE neg
Biop 2 of 12 pos
Gleason 3+3
29 Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
17 Nov 09 PSA 0.1
17 Mar 10 PSA 0.4 sent to RT
13 Apr 10 CT
28 Apr 10 start RT 66Gy
11 Jun 10 end RT
Tired
BMs weird
14 Sep 10 PSA <0.1
Erections OK

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 9/22/2010 10:22 AM (GMT -6)   
Juliet,
 
Sounds like a normal visit, although you always hope for more information. The decision for me was based on a combination of facts and educated speculation mixed in with some good old fashioned fear of the unknown.
 
You are getting a good start here - at least you will have a better shot than I did at being prepared.
 
The "no evidence" of perinural invasion would come from the biopsy report - mine mentioned it where it was found. The PIN - mine was "high grade". I'm not sure that it is a factor in chosing between surgery and radiation, it likely is for chosing AS, but then my uro brushed it off as common. I wound up doing DaVinci. I didn't like the percentages on radiation either, but now I've got the surgery side effects. Time will tell if I made a good choice.
 
I didn't see that you mentioned getting a copy of the biopsy report. If you did not, call and get one.
 
Not sure that I can offer anything else at this point besides my advice to proceed calmly, but with determination, and my best wishes.
 

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6078
   Posted 9/22/2010 10:37 AM (GMT -6)   
Juliet, you can still get the slides read by expert pathologists who deal with PCA everyday,but may have to go around your Uro to do so. What was the gleason score on original biopsy this has a lot to do with treatment. You seem very knowledgeable and proactive on this, continue this thruout. I hope, believe and trust the out come. This is NOT a death sentence!!
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 9/22/2010 11:11 AM (GMT -6)   
Juliet,
Sometimes the partin tables indicate results that are just way out there from reality. The most recent example was that it showed a higher dose of radiation achieved a much lower cure rate when in fact the opposite is true in just about every regard.
Although the tables are derived from thousands of patients, when they are broken down into small subgroups where the sample sizes is small you can get some results that don't reflect what is really hapening.
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 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


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 9/22/2010 11:47 AM (GMT -6)   
Juliet, Good Morning!

22cc prostate? There was only room for 6 needles! Mine was 72cc..

While the information derived from the Pardin tables has been proven to be very accurate, the published tables are derived from studies that are 10 years or more old..While surgeries percentages results have improved slowly over the years because of earlier detection and improved surgical techniques, the improvement in the results achieved by radiation MAY be even more spectacular as this field has seen tremendous advancements in recent years..Right now, today, radiation equipment is being upgraded as fast as treatment centers can afford to do so. If you should choose radiation as your primary treatment, the skill level of the Radiation Oncologist and the equipment he will use is more important than ever if you are to take advantage of these advancements..

Also, don't forget to investigate COST..Radiation treatment is much more expensive than surgery and some insurance companies impose heavy co-pays, so check THAT out too..The surgeons and R-docs will fight for your business (this is a multi-billion dollar industry) tooth and nail, so get ready for some heavy salesmanship..

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 9/22/2010 12:19 PM (GMT -6)   
Hmmm. I do have a copy of the biopsy report, but there is nothing there about perineural invasion. The urologist said it himself, so I assumed he could tell from the biopsy procedure, or the fact that any mention was omitted from the report. (Thanks for explaining what it meant, Alf.)

Reassuring information on the Partin tables!

Oh, I HATE to hear that radiation could be more expensive. That has been Carter's concern from the beginning...missing work and financial ruin. I think he is more worried about that at this point than about side effects from either procedure. I just want him to live!

I'll see if I can figure out how to go about assessing the radiologists and their equipment. I also need to educate myself on high dose and low dose brachy. In some ways, radiation seems more complicated.

Thanks for giving me more to think about, guys! Still going to head to the bookstore...

Juliet

Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 9/22/2010 2:48 PM (GMT -6)   
Hi Juliet,
 
I agree that your situation can be frustrating and confusing.
 
The one thought I would leave you with is that you are not in a fire drill situation.  You have the opportunity to truly understand the various options and talk to experts.  You can also speak personally and via forum with patients who have undergone all forms of treatment.  Dont limit you options up front either (I had an open RP)
 
The one step I would encourage is to set a date at which you would like to make a decision as to your short term and long term treatment options.  Depending on your comfort level that could be 1 month from now or 12 months from now (or perhaps longer?)
 
The paradox with pca is that it is usually slow growing but sometimes fast growing.  There is not definitive way to tell the difference (although there are many tools to build probability estimates).  Therefore, you really have to first assess how much you like/dislike risk.
 
That will just tell you how quickly you have to go through the process.
 
All my best
 
Retire
45 Male, Prostatitus in Summer of 2009
PCA diagnosed in November 2009 due to elevated PSA level
12 core biopsy, 1 core positive 15% 3X3. T1c
PSA started around 10 at the end of last year escalated to 15 and is now around 5.0. RP scheduled for mid September
Still confused how my psa can drop by 2/3 with no infection

Retire1965
Regular Member


Date Joined Jul 2010
Total Posts : 38
   Posted 9/22/2010 3:04 PM (GMT -6)   
Juliet,
 
I also wanted to point out that you should indeed consider cost when you are looking at next steps.  I am in the financial planning field and know that the financial impact of this situation varies widely based on whether families are insured, what type of health insurance policy they have, the provisions of the policies and finally the deductibles, annual and life time caps for treatment.
 
One day at a time...
 
Retire
45 Male, Prostatitus in Summer of 2009
PCA diagnosed in November 2009 due to elevated PSA level
12 core biopsy, 1 core positive 15% 3X3. T1c
PSA started around 10 at the end of last year escalated to 15 and is now around 5.0. RP done September 20th
Initial surgeon feedback is no extra prostatic extension. Waiting on full pathology report.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 9/22/2010 5:20 PM (GMT -6)   
Juliet, remember this little request:

"Could you please get pre-approval from my insurance company so we know beforehand how much our out of pocket expense will be?" Thank You..

Newporter
Regular Member


Date Joined Sep 2010
Total Posts : 225
   Posted 9/22/2010 7:11 PM (GMT -6)   
As one who went through the same process of selecting surgery vs radiation, I can sympathize with your difficulty in deciding. I like to mention that the selection of oncologist/place of radiation and the selection of surgeons are probably more important to the final outcome than choosing between surgery & radiation. In my opinion, the ability to figure out treatment procedure and the skill of the doctors mean a lot for outcome and lack of complications.

I recognize treatment options are very individualized and different for all of us and I hope you can find what is best.

Regards
Age 65 Dx; 3/10 PSA 10.7, 6/10 biopsy positive Adenocarcinoma, Gleason 3+3 & several atypia; Clinical stage T2; 7/10 CT, Bone Scan, MRI all negative

8-23-10 RRP; Pathology Stage: Negative margins, Lymph nodes, Seminal Vesicle; multiple Adenocarcinoma sites Gleason 3+3 with tertiary Gleason grade 4. AJCC Stage: pT2,N0,Mx,R0

Catheter out 8-30-10 full continent partial potency day 1, great surgeon!

cooper360
Regular Member


Date Joined Jul 2010
Total Posts : 161
   Posted 9/23/2010 11:33 PM (GMT -6)   
Juliet........Listen well to JohnT's posts! They were the most helpful to me when my husband had a elevated psa. He's not emotional like the women posting here lol!!!It was very calming to read his ideas.He seems to be very knowledgeable about tests,scans & treatments. My husbands situation turned out fine [no PCa],John's voice was very reassuring. Just my thoughts!!! Cooper

BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 9/23/2010 11:54 PM (GMT -6)   
Juliet,
the PeriNeural Invasion (PNI) they speak of concerns the nerve pathways within the prostate gland. When they take the cores there may be some of this pathway within the core. No pathway portion nor evidence of tumour in a pathway, report says negative for PNI. There is no way the doc could see PNI ..... that is the pathologists job. Like Alf said PNI can be a pathway along the nerve sheaf to outside of the gland. Bear in mind that after most prostatectomies PNI is seen. In my own case, negative for PNI on biopsy but extensive PNI was seen post surgery. Biopsy usually misses it. I assume that so few samples were taken because of the gland size ......21cc is the size of a young man in his prime. DRE can be a little misleading as well. A uro can only feel the rear of the gland top to bottom so if the tumour is at the front of the gland, nodules may not be felt. Get yourself some of the recommended books and learn all you can before committing on a treatment.
Bill
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