Biopsy results, advice needed with high gleason score please

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Barry's daughter
Regular Member


Date Joined Nov 2010
Total Posts : 34
   Posted 11/19/2010 11:15 AM (GMT -6)   
Just got back from the hospital. Obviuosly biopsy confirmed prostate but doctor scored dad at 9. we knew it would be high but just looking at other peoples signatures, cant find any quite as high. what does this mean??
I asked for a copy of the results, doctor said he would summarise and forward it to us, so I don't have anymore info that that. Can anyone help me to understand what this means for us please.
Doctor said it was positive that dad had had no paid at all since injections and no side effects.
 
I would be so grateful for any help and advice.
 
Lisa 

STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 11/19/2010 11:31 AM (GMT -6)   
I'm sorry but the quick answer is that the cancer is fairly aggressive.
You suspected that so take a deep breath. There. This is a beginning not an end. Your dad isn't going anywhere soon.
The biopsy cells are graded on a 1-5 scale from normal cells to (essentially) the most aggressive cancer cells. The Gleason score is simply the sum of the two most prominent cancer cells detected. A 9 means cells graded a 4 and a 5 or a 5 and a 4. Neither is good.
Fuller results such as the number of cores with cancer present will tell a bit more about how wide spread the cancer is in the prostate.
I believe you are past any hope of watchful waiting and the doctor will want to hit this fairly hard either with surgery and radiation or, more likely, radiation and hormones. There are people here with experience with both and more.

Willie B
Regular Member


Date Joined Jul 2010
Total Posts : 155
   Posted 11/19/2010 12:07 PM (GMT -6)   
It's graded from 2 to 10, with 10 being the worst.

I have G9 and it's been 2 yrs since my surgery and I'm free of symptoms, except for a spell when the side effects from one of the drugs was making life crummy.

Now that I'm off that drug, my PSA is climbing a bit too quickly and they're about to re-stage (scans) me.

Last time they scanned me, due to rising PSA, they found nothing significant and I'm hoping for the same result this time.

If there are signs of tumour growth, they'll put me on some other drugs to knock it back.

As you can see, life can go on for quite some time with a Gleason 9, so don't worry too much til you have the whole picture.

Hope they're doing bone scans and CAT scans on your Dad to rule in/out any metastasis and keep them at bay.

Please stay calm, it's all very upsetting at the beginning but you'll be comforted knowing that it's not over by a long shot.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 11/19/2010 12:24 PM (GMT -6)   
Good morning Lisa..You have never posted your Dad's PSA number but from what you have posted, I imagine it's pretty high if they discovered the cancer when doing a bone scan..You are correct, Gleason 9 is not a good number especially if your Dad's cancer is already in an advanced stage...More tests will be needed to determine just how far the cancer has spread before treatment decisions can be made..

It sounds like they have already started him on ADT, hormone therapy, which is usually very effective at controlling prostate cancer. Depending on the stage of his disease, they may add radiation if the cancer is still localized..

If you have not obtained a copy of Dr. Walsh's book, "Guide To Surviving Prostate Cancer", any book-store or library, now would be a good time to do it...There are other books that focus on treating PC in it's advanced stage. Check the threads at the top of the forum..

I too am a Gleason 9 patient, and so are many others on this forum. We form a special little sub-group that has to work a little harder to achieve our successes and fight off our set-backs..So take a few deep breaths, read the book, learn everything you can, Take notes when you talk with your doctors, otherwise you will forget half of it by the time you are out in the parking lot...Make them explain everything in terms you understand.

The people on this forum will help you as much as they can, never give up the ship and the best of luck to you...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
" 61: 5.2
" 64: 7.5, DRE "Abnormal"
" 65: 8.5, " normal", biopsy, 12 core, negative...
" 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
" 67 4.5 DRE "normal"
" 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT, Dec

Barry's daughter
Regular Member


Date Joined Nov 2010
Total Posts : 34
   Posted 11/19/2010 4:33 PM (GMT -6)   
Thanks for quick replies. I was can't beging to describe the feeling in the 'pitt of my stomach' I got when opening them, (though I guess you will understand). It never ceases to amaze me how strong and positive you all are, and having took those initial deep breaths (which I must confess bordered on hyperventalition) lol! I feel ok knowing he's not alone.
 
I spoke to doctor about the questions I had and asked for copies of results, although he answered my questions, he seemed a little somewhat 'put out' by my pestering. I want to know the facts and get things straight in my head to explain everything properly to dad so that he understands as he's to polite to say any other. I know doctors are doing an amazing job and we're so grateful, so where do I go from here? 
 
Does a gleason score go down or is that just PSA? docs just said PSA was high but gave no figures
 
We already know from bone/MRI/CT scans dad had recently that cancer had spread to small part of liver, adrenal gland and 'peppered' in his femur, (dad was due to have hip replacement due to brittle bone disease which was when it was picked up).
 
Thanks again
 
Lisa x

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 11/19/2010 4:56 PM (GMT -6)   
So the doctor would not give you the PSA number..He is probably unsure whether he can confide in you..Or your Dad told him not to...But "high" tells us a lot.

Very soon, you need to have Dad visit with a Medical Oncologist , not a Urologist, and have him take over Dad's treatment..Urologists just don't have the training to treat metastatic disease. Two different skill-sets. Sometimes urologists try to hold on too long, but good ones know when to pass the torch..A medical oncologist can, hopefully tailor your Dad's treatment to get his cancer under control for a good long time..There is far more to it than just a shot every 3 months...

Gleason scores seldom change..6 is slow-growing, curable cancer. 7 is more aggressive but still treatable. Gleason 9 is very aggressive and faster growing than the lower grades. Gleason 10 is even worse..

PSA, in your Dad's case, measures how far the cancer has progressed. In a healthy male it's usually between 0.5 and 3.0, a little higher in some men, 5.5 maybe..But with PC it can go as high as 3000....The good news is with aggressive hormone treatment or even Orchietomy, these high PSA numbers can be reversed and brought down to normal levels and all (cancer) symptoms disappear..The hormone treatment itself can have some pretty rough side effects but most men adjust to it ..

So we will all be here anytime you need us..

Post Edited (Fairwind) : 11/19/2010 4:14:07 PM (GMT-7)


fulltlt
Regular Member


Date Joined Nov 2010
Total Posts : 264
   Posted 11/19/2010 8:58 PM (GMT -6)   
One thing you can do is get a second opinion on the Gleason score. The way the score is obtained is by a pathologist viewing the samples under a microscope and assesing a number to the way the cells appear based on their level of experience at doing their job. Mine changed from 3+4=7 on the reading from the first lab to 4+4=8 on the second opinion reading from Dr. Jonathan Epstein at John Hopkins Hospital.
age 57 2/2010
PSA 8.2 2/2010
biopsy 2/2010 - 2 of 8 left & 2 of 8 right positive, Gleason 3+4=7
attended support group - advised to get a second opinion
second opinion on pathology from John Hopkins 4+4=8
PSA 15 4/2010 just before EBRT began
5 weeks EBRT 4/2010-6/2010 at Copley Hospital in Aurora, IL
91 implants of palladium 103 7/2010 at Chicago Prostate Center, Westmont, IL
PSA 3.97 10/2010

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 11/20/2010 3:22 PM (GMT -6)   
The other thing you need to do is spend some time by reading a couple of the books suggested in the reference materials on the first part of this forum. Knowledge is power, and gives confidence. Once you understand that your dad most likely has years, not weeks or months to live, you will settle down and work on the best steps to move ahead with. Keep on questioning your doctor(s) and make sure it is inline with what you see on here, in the books you read, and with the internet sites you visit.

I am also a Gleason 9. 18 months after surgery, I have a .01 PSA. I am very thankful, and will most likely be testing my PSA every 3 months for many years. It is certainly a tough diagnosis to hear, but it is not time to despair.

Good luck to you and your dad through the holidays.
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
15 month PSA <.01

BuiDoi
Regular Member


Date Joined Aug 2010
Total Posts : 234
   Posted 11/20/2010 5:50 PM (GMT -6)   
.
Lisa
 
We all here know just what you are feeling..  The disbelief of hearing the "C" word..
 
I was only a treatable  G7  and I am fine.
 
The G9's here   ARE   the ones who can tell you the facts..
 
There is a football field between G7 and G9
 
Our thoughts and prayers are with him and the family !
 
DO NOT  give up - you have much to gain..
 
Second opinions are important, but do not use that excuse to delay things.
.
.
Nov 2009 = First-PSA 5.3 @ 60yo - Asymptomatic - DRE-Non-Palpable
Jan-'10 = TRUS Bx DX - AdenoCar T1c - GS(3+3)=6 , 5 & 45% max., L-MidZone
May-'10 = RRP-Nrv-Spare
Post Op. GS(3+4)=7, 1.1cm3, Pos Margins, EPE (focal) Lateral Left
Margin-Involvement (extensive) Posterior , Grade3 x 8mm
+8week PSA<0.01, ED-85%, Incont-30%
+16W PSA<0.01, ED -85%, Cont -5%
+17W First 'DRY' day. ED -90%

Post Edited (BuiDoi) : 11/20/2010 4:54:34 PM (GMT-7)


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 11/20/2010 6:17 PM (GMT -6)   
Lisa thanks for writing. I too am a gleason 9 that had radiation. It was tough being on ADT3 for two years but it was well worth it. My advice is to keep your dad active and positive. This is not the end at all but it is a new chapter in life. Make the best of it. Exercise, eat right, and again stay positive.
Keep in touch and email me if you would like to chat

peace and love
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 11/21/2010 2:57 AM (GMT -6)   
Hi Lisa

Sorry you're having this grim period in your life (especially with Christmas etc looming)

You may find the doc is simply reluctant to give too much info to the person that is not the patient. (I don't want to sound trivial, but if you think of it the other way round and it was you being treated by a gynaecologist, then that doc would be reluctant to pass on your details to your dad)
If, however, even your dad (Barry) does not know what his PSA is, then I would find that a little odd. The uro should however be reporting back all his findings etc to your dad's GP so it should be possible to get some answers from the GP too. (If he's had the same GP for a while it may be a double-edged sword in that he may be at ease discussing stuff with him/her, or he may know him/her too well for something this heavy)

Also being in the UK, you are dealing with the historic way that NHS/UK doctors have treated patient's notes: a mind set that is basically that the patient shouldn't get to see stuff they won't understand. (I say that, even though my dad was a doctor). In the States and here in Holland they are more used to the idea that patients want information, plus the idea that patients would like to be able to decide what they want to do rather than simply get told what is going to happen by the doctor. For instance, my uro gave me copies of the original lab reports before I even asked for them, he also suggested I went away and investigated the options and then came back and told him what I wanted to do

As for the state of the Cancer, well on the basis of your initial posts about how bad it was, I don't think the Gleason 9 makes it any worse. In fact you could see the fact that it wasn't a 10 as a glimmer of light.

I'm no expert, but in my opinion:
I think that with things the way they are surgery is not likely to be the way to proceed, so the oncologist/radiologist are probably the people to tackle it not surgeons. (urologists are nearly all surgeons). What it boils down to is that because the cancer has already "escaped" surgery to remove the prostate will/can not stop it spreading, and all it will do is leave your dad with a whole bunch of side effects without any benefits from the surgery.

Chemicals (hormones etc) can suppress the cancer, to slow down the rate of growth; a regular session of radiation aimed at the prostate can shrink the cancer there. If mets start causing pain in the bones, then small doses of radiation can help deal with that.

If your dad is having, or starts to have trouble peeing, because the prostate or the cancer is pressing against the urethra, then there might be a need for some (minor) surgery to relieve that.

I think it will also be better to pay more attention to the tips from the guys with Gleason 9s than those from me.

All the best to you and Barry
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

Post Edited (English Alf) : 11/21/2010 2:01:33 AM (GMT-7)


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 11/21/2010 5:21 AM (GMT -6)   
Lisa,
you might want to look at the YANANOW site as well........ it is run by Terry Herbert who drops in here occasionally. It has an excellent breakdown of fellas by Gleason, PSA etc. There are many Gleason 9 guys there and their stories are freely available.Reading of the journey of others in the same boat can help alleviate a lot of the fears.
Scroll down to the bottom of this page:

www.yananow.net/Chart-Gleasonu6.htm#8

Bill
Biopsy

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

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"-----it is not possible for any lab to get a reading of less than .003)

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 May '10 <0.01

www.yananow.net/Mentors/BillM2.htm

Never underestimate old people ............ you don't get to be old by being stupid.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 11/21/2010 10:06 AM (GMT -6)   
Bump.. cool

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 11/21/2010 2:43 PM (GMT -6)   
Lisa ,
Right now you and your dad have a lot on your plates. We understand.
Any exercise you can get him doing now will benefit him in the long run. It will never be easier than right at this minute. Don't wait for a gym membership or exercise class. Start doing something now. Depending upon his condition you can go for a walk, carry arm weights, jog with him. Play the theme song for Rocky. He's training for the big fight and the earlier he starts, the better. It makes a difference.
Good luck to both of you.
Jeff
--------------------------------------------------------------------------------------------------------------------
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out prostatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7, Tumor size: 2.5 x 1.8 cm, location: both lobes and apex.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
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