After RP on May 17, seeing primary Urologist tomorrow for 1st time - Help With Questions?

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BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 6/16/2010 5:11 PM (GMT -6)   
Hi Folks.. as my heading notes I go back to Boston Medical Center do meet with with primary urologist for the 1st time since being in the hospital post RP - Davinci. I knew he would be out of town at catheter removal when my pathology was also available. Was told by the associate dr who saw me that gleason 3+4 went to 4+3, and there were positive margins.
 
That is basically the ONLY information I have regarding my situation, other than they have me pre-scheduled to meet with their Rad Onc next week.
 
While I respect and understand the incredible level of detail many post here about their particular PCa, I have not gotten into that level of detail yet... and to be honest, i'm not sure I want to. I DO want to make informed decisions, and I will be looking over my shoulder for the rest of my life, no doubt, but i'm not sure i'm emotionally ready to become married to the disease on that level...
 
I dont know half of the terms used to detail some of these things... Who knows how big the left 40% lobe of my prostate SHOULD have weighed, who wants to know the specific dosages of radiation they are going to use..? I mean, isn't this what expertise is for?
 
That said, of course I want to know what I need to know... and i'm only kidding myself.. i'll be expert on all the factors in very short time. I will be asking for the pathology report..... But other than that, if YOU WERE ME, what questions would you ask if you were me and wanted to ask him your top 7 questions? Thanks so much in advance.
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain!


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 6/16/2010 5:37 PM (GMT -6)   
Bob,

Got a kick out of your statement about not wanting to be married to this disease. Kind of like me saying I don't want to be ugly any more, or I don't want to pay taxes.

If only it were that easy. I have found that perspective for me is the difference between depression and optimism. As our friend Sonny says, "every day is a bonus". Attitude and education will help your perspective. Staying with us for a while will also.

Of course you want a copy of the pathology report, and the surgical report. Once you have that hard copy information, you can go to an oncologist, or radiologist and start to talk intelligently.

With my Gleason 9, some advised adjuvant radiation. My surgeon from Cleveland Clinic told me that the thinking there was to wait until a rise in PSA. Like most men, we all dread a round of radiation on top of the surgical assault we have been through, but I think as you read the many stories of guys on here, it really isn't that bad. Radiology has come a long way in the last few years, It is a very targeted, precision delivery of radiation to the areas that they hope the PC is.

Good luck, glad to hear you are recovering.
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 injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25394
   Posted 6/16/2010 5:37 PM (GMT -6)   
Bob, for starters, no one here is an "expert" with PC. Some are more informed and researched more than others. So don't feel bad about what you don't know, that's what your medical professionals are for.

While an upgrade from a 3+4 to a 4+3 is not what one wants, its not that uncommon. Yes, they are both Gleason 7's, but of course, in a 4+3 combo, assuming the pathology is correct, it is made up of more type 4 cancer cells, which are more agressive by nature.

As far as radiation plans go, thats the job of a radiation oncologist. Coming up with the "plan" is unique with each patient, and there are many factors they compensate for when determining how many treatments are needed, and at what amount (gys) and even how its delivered. Again, those are the things for the experts.

Just because a person has positive margin(s), doesn't mean its 100% will cause the cancer to recurr, just more likely. We have men here with no positive margins that have had recurrance, and men with positive margins that haven't. Such is the fickled nature of PC.

If I read your dates correctly in your stats, you haven't even had your first post-surgery PSA test yet. That should be coming up soon, I would hope you slide right into the Zero Club with a good reading.

The radiation oncologists I have met with, including the one I went with, don't like to start immediate radiation after surgery, until they see evidence of the cancer coming back. Some doctors do that differently, of course.

I fully understand your concern, as I am a Gleason 7 case with high velocity, and my surgery "failed" and I have recently finished salvage radiation, but dont worry your self sick at this point. You are clearly still in the post surgery recovery side. I will come back and post a few questions for you.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 377
   Posted 6/16/2010 11:07 PM (GMT -6)   
Dear Boston,
 
I can understand your frustration and disbelief that you are here but the people on this forum can really help you vent and give you good advice. I don't post here much anymore because I don't have a lot to add to what everybody else has to say. Still you are 4 years younger than me and if my psa ever starts to rise again I will definately go have radiation. You should too, if and when is the question. I'm at 18 months with still 0 psa. Sex life is gone but that's due to my wife's illness, not due to what's available with pills and injections. You say you don't want to irradiate yourself into a vegetable and that you've had a good 50 years of life. Come on, people live over 100 years sometimes if they are lucky. Radiation, from what you will read from others here is pretty tolerable. On the average it will make you a little more tired but it is still worth the effort. I would (and will) certainly do it if it's in my future.....
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
5 0's in a row now, 18 months out
Incontinence gone in early December '08,
ED still a problem, normal erections with manual effort but wife is now ill, not interested in sex anymore

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