I got bad news today--need advice

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 11/20/2009 11:52 AM (GMT -6)   
Let me summarize and then I have some questions.
 
I had my routine physical in August. Unfortunately, I was informed my PSA test was 4.01.
 
I was put on an antibiotic for a few months and then retested. Ideally, if it is an infection, the PSA would go down. Mine went up to 4.19. They also did a "free PSA" test. This is more specific for cancer. Ideally, you want a number above or equal to 25. Mine was 24. Once again, not good, but all of the above numbers were in a grey area. But the fact that my PSA 18 months ago was 2.97 and that the last PSA went up even after the antibiotics was not good.
 
I then went to Univ. of Mich. hospital for a second opinion. They have a brand new test, the PCA-3,  that is really specific for prostate cancer. 35 is the cutoff point there. Higher than 35 is not good.  I just got the bad news today. Mine was 75.9, which is just not good at all.
 
None of the above is diagnostic, but it is suggestive. I have to undergo a prostate biopsy and do it quickly. Now, this is interesting. I indicated that I would like to get the happy juice (ie: the colonoscopy type of sedation) for the procedure as I am feeling rather wimpy about all of this. The doctor didn't really want to do it that way, but would. Anyway, she talked me into not going that way. I then had to talk to scheduling I want it done ASAP. Well, I could get it done on 12/18 or they can squeeze me in on 12/11, OR if I want the sedation, they can do it in the OR on 11/30! That convinced me! I'm doing it on 11/30.
 
Now for my questions. I usually do my own research but I am now in scared panic mode and I am just not thinking clearly. First, is there still a decent chance that I do NOT have PC? It appears from the research I did that there is about a 55% chance of a positive biopsy. It seems if the PCA-3 test is that good, there would be a much higher probability, so maybe I didn't read it right (this was awhile and I am having problems finding the reference again). Can someone help me out on this? Also, we know that biopsies can certainly miss cancers, so saying there is a 55% chance of a positive biopsy does not mean there is a 55% chance you have cancer. Am I correct? Wouldn't  it be much higher?
 
Finally, I am now worried about having aggressive cancer, based on that stunning number. I recall reading that they hope to use the PCA-3 to find aggressive cancers, but I'm not sure if they quantified any of that or maybe they even meant subsequent to one positive biopsy?
 
I'd appreciate any information.
 
Mel

PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro!
 
History of BPH/prostatitis.
 
Awaiting results of my PCA-3 test which will determine whether a biopsy is in my immediate future


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 11/20/2009 12:12 PM (GMT -6)   
Mel


Firstly my reply may not fit your situation so don't let if seem like good news or bad news. Carry on using HW and more sources to build up the supply of information you may need.



Take a deep breath. And then another one.

If there is something inside you, then all you can really do it tackle it and not get too wrapped up in the Why me? and Why now? aspect.



If it turns out you do need treatment then you do actually have plenty of time to make the decisions about what and when and also plenty of time to get help, support and advice (including from HW)



I recommend sedation for a biopsy. I wasn't given any and it hurt, but the guy operated on the same day as me had his without sedation and experienced no discomfort.



The risk about a biopsy missing something is true but it depends to some extent on how big your prostate is and how many cores they take. The ultrasound measured mine prostate as 26gms and he took 12 cores. So that was a lot of coverage. I have seen prostates of 145gms mentioned and some times only 6 cores are taken so that could obviously miss. So that is a case of checking with the doc what they'll be doing.



And remember if you have a biopsy to get the doc to give you antibiotics to take in time. I had to take them for three days, but start on the day BEFORE the biopsy.



I am sure everyone wishes you well.





Alfred

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 11/20/2009 12:33 PM (GMT -6)   
Mel,
I agree with Ohio and Alfred and would just take this one step at a time. It's hard to convince the "mind" to do that in this type of situation. Plan your next step and that is the biopsy. Your not a wimp as I didnt like it, but my wife was there and came over and held my hand when she saw me grimace. But the next day I was out running, or at least I had to wait 24 hours from the procedure. Take care and keep us posted.
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 11/20/2009 12:34 PM (GMT -6)   
Mel,

Now you have to take this from a supportive view from a fellow PCa brother, okay.

Time to back up once again and take that deep breath. I know it ain't easy (had experience on this one)but, it is absolutely necessary.

Don't let yourself fall into the analysis - paralysis trap. You have done all that you can at this point to rule out PCa. You have even run a few tests that most of us haven't or weren't aware of.

Every guy out here responds differently to tests, treatments, medications and side effects. There are odds on the best and the worst of them.

Right now, in a logical progression you need to move forward with the biopsy. I understand your trepidation about the pain. Hell, we all have varying thresholds for it. The one constant in pain is the fear of the unknown and the fact that with most things, the anticipation of something, good or bad is usually far greater than the reality.

Personally, my biopsy did not hurt one bit. Whatever local they used was enough. I watched the process on the monitor right along with the dr. They told me you will hear a click and feel a stick. I had a 12 needle test and felt only 2-3 of the sticks. But I did watch the needle go into the prostate each and every time. The worst part was having to clean up my own greasey butt with a big hand full of paper towels the tech handed me when the test was over.

All of the tests you have done so far are predictors and prognosticators. The biopsy cores are the ones that can go under the microscope and be physically examined.

Can biopsy miss the cancer, yep, as evidenced by the stories here. Do more needles guarantee that the cancer will be found, nope, as evidenced by the stories here. Is the final result of the biopsy, i.e. Gleason Score, an absolute, nope, as evidenced by the changes that occur in the score once they have the entire prostate in their hands (after surgery).

You need to try to take this one step at a time. Mel, all of this is from the heart, from a guy who was very close to where you are just a few short months ago. I found out 3 days after my wife went into the hospital at the beginning of a 7 weeks stay. To say my mind was running a little rampant with computations, permutations, analyzations and considerations is putting it a little mildly.

One step at a time. One foot in front of the other. Analyze the next step only after the preceding one has been completed. Otherwise you can really drive yourself into a frenzy of chasing your own tail.

As I said, this entire chat with you is absolutely delivered with the love of a fellow PCa brother. It is also delivered with the experience gained when a couple of the caring brothers here at HW had the same chat with me.

Take the deep breath, slow down, and proceed,

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 Dr. Mani Menon Henry Ford Medical Institute

Post Surgery Pathology:
Gleason: Changed to (4+3) = 7
Stage: T3a
Tumor Volume 12.5%
ALL NERVES SPARED
Margins: focally positive right posterior mid level
Perineural Invasion: present
Seminal Invasion: absent
Venous Invasion: absent
Angiolymphatic Invasion: absent
Left Internal iliac lymph node: reveals zero
Right Internal lymph node: reveals zero


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 11/20/2009 12:34 PM (GMT -6)   
I would not stress out on the PCA3 test. It has not yet been approved in the US for standard screening protocol, though it will be. It usefulness is not a replacement for a pathology biopsy of the prostate. But you should start getting your plans for that biopsy completed. And the best of luck to you.

Tony
Prostate Cancer Forum Co-Moderator


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 11/20/2009 12:39 PM (GMT -6)   
My advice would be there is a good chance you do have PC, 1 out of 6 will get it, but it is very treatable, with several good options so don't get overally upset.  Also slow down, there is no rush, don't rush into decisions you will regret later.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 11/20/2009 1:04 PM (GMT -6)   
You still don't have enough info to draw a conclusion. You need the biopsy, most men would not need to be sedated for the biopsy, myself included, but if it makes you more at ease, it will also make it easier for your doc. to get good samples when you aren't so up tight.

Your mind is getting way ahead of the facts you know at this point, and all the "what ifs" and speculations will drive you crazy and fearful, already sounds like it has done that.

Get your biopsy done properly, and get the results. This story could still turn out several different ways, and there is no way of knowing at this point without a full biopsy.

It will show you if you even have PC at this point or not. If you do, will give you a good estimate of what stage it is at, and then you can start thinking about the best way of handling it.

Please keep us posted.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
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 - began IMRT SRT - 39 sess/72 gys cath #8 33 days, 11/2- SP Cath #9 in place


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 11/20/2009 1:25 PM (GMT -6)   
Mel...don't look at all this as all BAD news...now you have reasons to move forward with a biopsy.

For what it is worth, my uro said that while it is true 1 in 6 men at some point in their life will have some form of prostate cancer, he also cautioned that only 1 in 4 biopsies show positive at these low levels of psa. I went from 2.6 to 4.6 in 18 months which is very similar to yours, even though I came in positive, it was very early in the disease stage so I had all the options open to me. I feel certain that if you do have the disease it will be also in the early stage and very treatable. So as others have said...slow down and take some deep breaths.

BTW having a tooth filled is far more painful than the biopsy IMHO...but if you have the opportunity for sedation to take the edge off...why not.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month Apr 2009 .06
                   9 month Jul  2009 .08
                 12 month Oct 2009 .09 


Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 314
   Posted 11/20/2009 1:28 PM (GMT -6)   
compiler,
 
Allow yourself to be nervous and scared.  There's nothing wrong with being nervous and scared.
 
Your numbers (4.19 PSA; 24% free PSA; 75.9 PCA-3) do not in the aggregate point in any one direction vis-a-vis cancer vs. no cancer, much less "aggressive" vs. "regular" cancer.  However, that is not their function, and it's not fair to ask these numbers to do a job they are not designed to do.  Their real function is to determine whether a biopsy is warranted, not to determine whether you have cancer or not.  No doctor would operate/radiate based solely on your total PSA, free PSA, or PCA-3 numbers.  
 
Your numbers are enough to justify a biopsy in my opinion.  So get a biopsy. 
 
The biopsy will be either positive or negative:
 
If positive, you have prostate cancer and you can move on to the next group of questions.
 
If negative, you can put the "what if they missed the cancer" type questions back on the table for discussion - if you really want to do that.  I'd suggest instead to wait a while and get another PSA test, particularly with your history of BPH and prostatitis (which is notorious for appearing and disappearing, with or without antibiotics, and which can wreak havoc with PSA test results).
 
As for the biopsy itself, you will hear stories that range from "worse than the cancer operation" to "no big deal."  More of the latter, I strongly suspect, but everyone is different.  No one gets more anxious than I do about procedures like this - and I mean NO ONE.  But for me, it really turned out to be no big deal; one Valium taken 45 minutes before the procedure was more than enough for me.  But if you want a tranquilizer, a local anesthetic, or even general anesthesia, get what you want.  Believe me, there are many urologists who will want to do your biopsy - it's a very lucrative procedure for them.  So find one who will "do it your way."
 
Two final thoughts:
 
1.  They sometimes forget to tell you that the biopsy gun makes a loud noise.  It can startle you if you don't know it's going to happen. Obviously, the noise doesn't hurt.
 
2.  One thing is for sure - whether it hurts you not at all, a little, or a lot, the biopsy will be over rather quickly.  I've never heard of an hour-long biopsy....
 
Zen9 

Post Edited (Zen9) : 11/20/2009 3:02:54 PM (GMT-7)


kodiak
Regular Member


Date Joined Nov 2009
Total Posts : 27
   Posted 11/20/2009 2:14 PM (GMT -6)   

Compiler ,

             The biopsy isn't that bad, Have the doc give you a valium 10 Mg before you go and it will make it alot easier, My PSA was 4.5 and doc was sure it was the prostititus that caused the high reading .Turned out he was wrong as I had 1 core pos. Keep your chin up and be positive .

                                                         Charlie


Age 52
PSA4.5
Gleason 6
Robotic surgery Oct29, 2009
Pathology margins good
1 week off cath 1 pad per day
St Clairs hospital, Denville NJ
Dr Colton


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 11/20/2009 2:23 PM (GMT -6)   
Not much to add that hasn't been said all ready. But we do understand! I went through the biopsy last spring (Not as bad as I thought it would be). That was with no pain killers (Not my choice, the doctors). Just glad I don't have to do it again. Had my surgery with Davinci in August. I was scared by it all but now looking back I sometimes wonder why I was so afraid. Its the unknowns that get to you. So have the test then you will know one way or the other and can plan. We will hope for the best for you but even if the news comes back as prostate cancer You will do fine, this is a TREMENDOUS support Sight and we look forward to hearing from you.

Larry


Age 55 / age at diagnosis 54, PSA 5.1
Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
Final Path report:
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear, Positive Margin Noted in Right Apex
 
First post Surgery PSA - 0

Post Edited (lewvino) : 11/20/2009 1:39:22 PM (GMT-7)


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 11/20/2009 2:54 PM (GMT -6)   

First of all good luck and Godspeed!  Lots of real good advice above and I feel that I can’t add anything of a contributory nature to it.  However I’ll comment on the Prostate Biopsy. 

 

When I make comments about things that happen to me I am very careful to make sure that it is reflective of how things actually were.  As an example, I never had one pain shot or took one pain pill while I was in the hospital following my robotic surgery. Or after I got home. Did I have pain after surgery? I would describe it as having discomfort not actual bad pain.  At the very most I gave it a 3 on a 1-10.  This includes the recovery room which I pestered the heck out of the staff so that they kicked me out in about 30 minutes to my room.  I was up walking 3 hours later. This was after 4.5 hours of anesthesia.  I’m not saying any of the above to act like I’m special or a real man, I just want to pave the way for the following comments.  I gave the prostate biopsy a pain rating of 8 on the same 1-10.  I had a friend that had this done 2 weeks before me and he said that a dentist had caused him more pain.  I called my friend from my care as my wife drove me home after my biopsy and told him he should FIRE his dentist.  So after I have my biopsy my cousin needs to have the same because of an elevated PSA.  We talked extensively about it.  He goes and has exactly the same 12 core biopsy procedure that I had and said that he never felt a single biopsy.  He even went out to dinner and a show after the biopsy.  I had to stay in bed for 24 hours and would have taken a monster load of pain pills if I had any.  Soooooooo darn if I know what the heck the difference was.  But all of the above is true and I have absolutely no explanation for it. I did have my biopsy on a Thursday and my cousin had his on Monday.  So maybe the needle gets much duller as the week goes on and they start with a new biopsy needle each Monday, (LOL)

 

Jack


Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. 75% of one core.
da Vinci at Wash U, Barnes on 11/02/09
Pathology Changed Gleason to 4 + 3 = 7. Gleason 7 present in all 4 quadrants
All(4)periprostatic Lymph Nodes Negative, All(10)pelvic Lymph Nodes negative
Seminal Vesicles tumor free. No prostate extension


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 11/20/2009 3:37 PM (GMT -6)   
Complier,


Don't sweat the biopsy. I got mine asleep and you'll wake up as from a nice refreshing nap. I was out playing golf the next day and had a little blood in my urine for a couple of days. It was totally asymptomatic.



Don't fool yourself into imagining some future scenario that doesn't yet exist. One step at a time.



Good luck,



Steve

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/20/2009 4:16 PM (GMT -6)   
From a fatalistic point of view, all of the worry and frustration won't change what will happen, in fact it will only make it worse.

As has been mentioned, try to find a positive angle on this. Once you you have the biopsy, you will know. Once you know, you can deal with it. Once you've dealt wth it, you can pick up your life and move on.

Many, many men have been through this, and we have made it to the other side. It will work out.

Good luck and stay tuned to HW.
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 injections


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 11/20/2009 8:05 PM (GMT -6)   
My one advice to add to excellent posts above is if you are getting a biopsy, get a saturation biopsy, especially since you are doing it under anestesia. When you take more cores, the confidence in the result is higher.

To balance this advice, please know that I had 5 saturation biopsies that missed my cancer. So, getting negative biopsy results with no explaination of high PSA counts is not necessary a good news.

Best of luck. (BTW, all six of my biopsies were done without sedation and other than some discomfort and a pintch or two I did not feel anything).

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 11/20/2009 8:11 PM (GMT -6)   

Dear Compiler:

I agree with the other advice on this thread, i.e. I think it's a good idea to get a biopsy at this point.

Re biopsy pain, we have had several threads on this in the past and the answers ranged from "no big deal" to "excruciating pain".  I had mine done under IV anesthesia so it was a breeze.  My doc's theory on this is that (a) there is no point in subjecting a patient to unnecessary pain and (b) with a patient under anesthesia he can take his time (16 samples) and not worry about a wincing patient.  That sounded reasonable to me.

Good luck...hope it's a big nothing on the pathology...

Tudpock


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!
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