Kinda freaked out

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mljsher
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/3/2010 10:04 PM (GMT -6)   
Hello everyone, I was just diagnosed last week, and I'm just trying to deal with it. My PSA jumped from 1.4 last year to 3.6 this year. My urologist ordered a second PSA test, which came back at 3.0, prompting him to perform a biopsy. He took 20 samples and 2 came up positive. He informed me last Tuesday the 29th. We're meeting this coming Tuesday to get the details and discuss options. Based on what he said (the two areas are tiny), and the way he said it, I was left with the impression that it's not a very big threat at this time, and based on everything I've read, it looks like I have a real good shot at beating this. Still, I find myself on an emotional roller coaster. I'm sure I'll feel differently after my appointment, but I just have to get this out to those who've been there. Thanks.
Age 54
PSA 11/08 - 1.4
PSA 11/09 - 3.0
20 samples, 2 positive


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 1/3/2010 10:16 PM (GMT -6)   
Welcome to HW,

You have definitely come to the right place for information and support. This is a very knowledgeable and supportive bunch of folks.

The roller coaster you are on has been experienced by all of us. You are not alone or unique in how you feel right now.

It would appear that you have caught it early and as such you have many options available to you. Try to take a few deep breaths and dig in to understand where you are and what options you have for the future.

Your biopsy report and the visit with the dr. will give you much valuable information. Be sure to take someone with you to the visit. Your head will be spinning and it is good to have someone there to help you remember all the little details that come out.

Bless you and your family. Come back here as often as you like. I can attest to the fact that this site is an endless and deep well of support and caring. I have drawn from it often since I was diagnosed in July of this year.

Sonny
61 years old
PSA 11/07 3.0
PSA 5/09 6.4
Diagnosis confirmed July 9, 2009
12 Needle Biopsy = 9 clear , 3 postive
<5%, 90%, 40%
Gleason Score (3+4) 7 in all positive cores
CT Organ Scan - negative
Nuclear Bone Scan - Negative
da Vinci 9/17/09
Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
NERVES SPARED-positive margin, extra-prostatic extension
30 day PSA 0.4, 50 day psa 0.53, 64 day psa 0.6
IMRT scheduled to begin Nov 30,2009 (74 days post surgery)


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 714
   Posted 1/3/2010 10:19 PM (GMT -6)   
Hi mljsher,

Looks like attendance here is light, probably because of the holidays (which I have been on also). So let me be the first to welcome to the club that no one wants to be in. It sounds like your uro is handling things a bit better than mine did--my guy told me over the phone that I had cancer, and he was immediately referring me so someone else. Of course, I was sort of in shock, like you probably were. I was also at work at the time, and wasn't really able to do much. But as you have seen if you've looked around here, your number are much better than many of us here, so your odds are at least as good. I'm about the same age as you, had my diagnosis and surgery a little over a year ago, and am feeling pretty good these days. Of course everyone is different. You will have a few weeks before your doc will even let you have any treatment, so that your tissues recover from the biopsy. Spend the time doing research, talking to doc and to the guys (and gals) here, and also try stay healthy in general, which will help you through whatever procedure you wind up choosing.

Good luck,

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)
4/23/09, 07/30/09, Oct 2009 still undetectable!


Rolerbe
Regular Member


Date Joined Dec 2008
Total Posts : 235
   Posted 1/3/2010 10:24 PM (GMT -6)   
Hello and (sadly) welcome, mljsher.  You've come to a good place for help and info.
 
Of course you are kinda freaked out.  When I was first told my mental response was "Well, that's just ridiculous" (i.e. denial).  Little did I know just how ridiculous it was about to become...
 
Look through some of the threads here and you will find a couple of themes.  First is to take your time, gather info and try to dampen down the panic.  You do have a real good shot at beating this.  And you have a minimum of 8 weeks waiting time until you can even possibly enter into the next treatment (to heal from the biopsy), so you have time to sort it all out and decide what to do.
 
Second, there are a lot of treatment options, and there is no clear winner in terms of outcomes, so it will come down to personal comfort and potentially any other complicating factors you might have, etc. that will help you decide what's right for you.
 
Third, there are basically three primary concerns:  Far and away the most important is survival.  Given that, then continence (and for some treatments, the possibility of rectal issues).  Given that (give or take) then ED.  Some pass all three tests. 
 
Ask questions.  On treatments, on impacts and how to deal with them, or just for help keeping your sanity throughout.  Lots of good folks here to give you support.
 
 
51 YO
PSA at Dx: 8.2
DaVinci RALP: 10/31/08 -- Great MD in New Haven, CT
Negative margins, no extra-capsular involvement
One nerve spared
PSA at 0 for just over a year now.
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 1/3/2010 10:30 PM (GMT -6)   
Welcome Mljsher,
Pity you had to be here but you could not have come to a better place for support and info. Sounds like your doc did a good job in taking 20 samples...........that should give a pretty good idea of the extent of any abnormality. PSA is reasonably low so that's another plus for you. You'll find the general piece of advice is take your time, understand what it is you have and learn of all the treatments. (including if any is really required at this stage). You can really learn a lot about this disease from the great group here. One who's decision making process you should read carefully is "Compiler" who really threw himself into a study-fest and is probably a very good example about a great approach in dealing with the disease. Doesn't mean you should come to the same conclusion but the process is what's important. Make sure you get a copy of the biopsy report following your next consultation. Again, welcome,
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01
PSA August 09 (2 year mark), <0.01
PSA December 09 <0.01

My Journey: www.yananow.net/Mentors/BillM2.htm

Post Edited (BillyMac) : 1/4/2010 3:09:24 AM (GMT-7)


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 1/3/2010 10:30 PM (GMT -6)   
Welcome to the club that hates to have new members.
Every one of us has been through much the same feelings that you have and we know about the emotional roller coaster. So the first thing is take a deep breath. Prostate cancer is slow moving and there are many good options. In fact, one of the problems is that you will do best if you take some time and learn about the disease. Look at the top of the topics list for many good information links as well as some recommended books.

Learning more will also help you understand what your doctor tells you. For example, your biopsy results will include a Gleason score which characterizes how indolent or aggressive the cancer cells seem to be. Thus a 3 + 3 = 6 is better than a 4 + 4 = 8

In any case, this is a place where you will find answers and support from people who very much understand the emotional impact that the diagnosis has
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


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4089
   Posted 1/3/2010 10:46 PM (GMT -6)   
We have all been there buddy. Unlike you, I did not find this place till after surgery. You can get a welth of knowledge about PC and options. No one here will tell you what to do but many will give you their progression through the journey. Do not hesitate to ask questions. Most of us have had the same questions and others have answered them for us. Now we will walk with you through you process.

Bring a recorder with you to your Dr. visit. Bring you Partner with you for a second set of ears.
Start writing questions that you want answered.

Somewhere on this web seight there are a list if great questions.

Get a copy of you Biopsy report.

After your visit post your stats and let us know what the Dr told you then start fireing the questions.

Best of luck

Jeff T
Cajun Country
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


mljsher
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/3/2010 11:20 PM (GMT -6)   
Thanks for the support, guys. I'll post my results here when I get them, and then it's onward and upward. FYI to Sonny, your diagnosis was confirmed on my birthday. Interesting little coincidence.
Age 54
PSA 11/08 - 1.4
PSA 11/09 - 3.0
20 samples, 2 positive


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 1/3/2010 11:24 PM (GMT -6)   
I don't think there's one of us who wasn't shocked almost beyond belief when we were told we had prostate cancer and it takes each of us a different amount of time to calm down enough to consider the treatment options that will be available. My suggestion is that you listen to your urologist as carefully as you can, ask as many questiions you can think of and that you be completely candid with the physicians/specialists about your health history so they can make the best recommendations possible. If you're uncomfortable with or don't completely trust those caring for you then find other medical professionals with whom you can delvelop that confidence. Best wishes for good results and for a cancer-free life ahead.

Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


mljsher
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/4/2010 2:24 PM (GMT -6)   
Sage advice, Mavica. Thanks.
Age 54
PSA 11/08 - 1.4
PSA 11/09 - 3.0
20 samples, 2 positive


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/4/2010 5:27 PM (GMT -6)   
OK, I'll bite. I actually wasn't freaked out at all when I got the diagnosis, because I had read so much about the prevalence of PCa, all men end up getting it, very treatable under most conditions, etc. etc. Thought this thing would be like getting my tonsils out, at worst. Then my wife got hold of the biopsy results, including the aggressive nature of cancer found at Gleason 8, and I then completely re-worked my attitude ... I got completely convinced I was gonna die, and soon. (I'm not afraid of death at all, but now would be really inconvenient for a variety of reasons in terms of impact on those I love.)

Now I have a balanced attitude, after successful surgery and outstanding recovery so far, feeling optimistic about my future but aware of all possibilities. Bottom line: everyone reacts differently to the news, and it's OK however your emotions run. They are likely to be a bit of a roller-coaster ride, so buckle up! Great to have a resource like this forum to get perspectives from other guys who have been there.
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, lymph node involvement 0/9, perineural invasion, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 maxipad/day, with minor leakage when I get up from long seated position; ED pretty complete: some erection possible but current non-functional


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7197
   Posted 1/4/2010 10:30 PM (GMT -6)   

Believe me, your panic is understandable. This is not a pleasant journey.

For me, I was a basket case for a day or two. But I quickly threw myself into researching this disease and learning everything I could. HW is a great source. I never hesitate to ask questions here.

 

You will find that some folks are a tad predictable and they have a particular ax to grind. But that's fine. They have a lot to contribute. There are enough responses to questions so overall you can get a good and accurate answer and draw your own conclusions. Also, READ.

There are some good books (I like the ones from Walsh and Strum -- I don't have the titles here at the moment).

More importantly, you will find that your emotions will calm down as you learn more. For me, after maybe a few days, there was kind of a tipping point, where I regained my equilibrium. Also, when I finally made a treatment decision, I became a lot more relaxed.

I'm sure I will start to "unravel" as we get closer to surgery, but that's to be expected.

Mel (surgery minus 3 weeks and counting)

 


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Latest: Surgery with Dr. Menon at Ford Hospital, set for 1/25/10

 


mljsher
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/4/2010 11:04 PM (GMT -6)   
All, thanks for the posts. I have regained some equilibrium. I spoke today with a local friend who has been cancer free for a couple of years. He put me at ease on several fronts. Our local library will be open tomorrow, and both my wife and I will be hitting the books. My appt with my urologist is also tomorrow, and once I have some facts in hand and a decision to make, I'll feel better. Thanks again.
Age 54
PSA 11/08 - 1.4
PSA 11/09 - 3.0
20 samples, 2 positive


Jim B
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 1/4/2010 11:35 PM (GMT -6)   
You can see from the responses that everyone here really wants to offer support and encouragement. Like everyone else, I wish you didn't have to pay the dues to join this club but I really do hope for the best for you. I'm glad your wife is going to the appointment with you. I know this cancer is really scary for those of us afflicted but it can be really difficult for our immediate family as well. Just be ready to support each other.

Good luck

Jim B
Dx age 48 PSA 11.58
Biopsy Nov 04
4 of 6 specimens positive
gleason 4+5=9
Perineural invasion at two locations
40 radiation treatments Jan-Mar 05
PSA May 05 0.07
Aug 05 - 0.15; Feb 06- 0.92; Oct 06- 0.55; Sep 07-0.42; Mar 08-1.13 Aug 08-2.26
Nov 08-3.98; Jan 09-5.81; Mar 09-9.02
Bone scan in Nov 08- one spot in pelvic region 1.9cm with SUV of 11
Bone scan in Mar 09-two spots. Original now 2.5cm with SUV of 22 and 2nd spot less than 1cm with SUV of 7.8
Bone scan in Nov 09 - NO CHANGE WOO HOO!


skeener
Regular Member


Date Joined Dec 2009
Total Posts : 214
   Posted 1/4/2010 11:44 PM (GMT -6)   
 
Glad to read that you have regained your equilibrium.
 
I can remember last spring when I was told I had PCa, even though it was Gleason 6 in 2 cores out of 12 and the urologist described it as nonaggressive, I was convinced the end was near.
 
You have received a lot of good advice from people in this thread.
 
I would make two comments.
 
The first is to do research and find the best solution for you whether it is AS or surgery or other.  I decided on open RRP with an excellent surgeon.  It was 4 months between the diagnosis and the surgery.  While I did not look back once I made my decision, it was a long four months.  PCa is very hard on the mind.
 
The second advice I give is to prepare yourself for your treatment physically.  I chose walking and eating smaller portions at meals so that I lost 20 pounds over the 4 months.  My doctor said I would be very pleased that I had done this and indeed I was.
 
The surgery went much better than I could have imagined.  Of course I still worry now about the PSA readings over the next year.  That is why  I chose surgery over AS.  I hope to hear a string of 0's over the next couple of years which will convince me that the cancer is gone.
 
Want to spend more time with my kids and grandkids for years to come!
 
Good luck in your further journey along the PCa road.
 
Carl
 

Age:  63 
Biopsy: May 09 showed 2 of 12 cores positive for prostate cancer -- 1 at 5% and 1 at 25%.  Cancer indicated as non aggressive.  Gleason Score: 3+3.
RRP on Oct 23/09 in London, Ontario.  Excellent surgeon. 
7 Weeks Post Op -  The fears I had about bad things about the operation and recovery did not materialise except of course ED!!.  Otherwise, everything went very smoothly.  Incontinence not a problem.  Wear a pad when out just in case. Pain was never a problem.
Pathology:  Unremarkable 
First followup PSA and Visit: Feb 07/10.      


mljsher
New Member


Date Joined Jan 2010
Total Posts : 7
   Posted 1/5/2010 3:27 PM (GMT -6)   
Carl, thanks for the post. Having just got back from visiting my urologist, I can breathe a little easier. Here are the facts:
Right Prostate: 1 core measuring 1.5MM with a Gleason Grade of 3+3=6.
Left Prostate: 1 core measuring 0.5MM with a Gleason Grade of 3+3=6.

My urologist calls terms my cancer "insignificant" in terms of any potential threat in the near term because of their size, and his recommendation is AS. Personally, AS bothers me, mostly for peace of mind reasons. It looks like the best treatment for me is surgery. I'm not a good candidate for radiation, mostly because I originally came into his care because of frequent urination issues, and radiation could easily exacerbate those. While the surgery also has drawbacks, I think it's the better option at this time. In terms of being in shape for the surgery, I'm a runner and have been for several years, and so my weight is in a good place. Thanks again to everyone who posted here. It's been a great help.
Age 54
PSA 11/08 - 1.4
PSA 11/09 - 3.0
20 samples, 2 positive

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