just heard some news.

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Lynn01
New Member


Date Joined Oct 2010
Total Posts : 5
   Posted 10/22/2010 7:56 AM (GMT -6)   
I just found out yesterday that my dad has prostate cancer. His Gleason is 9. His PSA is 10.33. I am very emotional right now and don't know what to do. He told me that he was going to get hormone therapy. He sounded like he was unclear and unsure about things, and I want to make sure that he is looking for options out there. I joined this because i want to see what other experiences some of you have gone thru. He had a bone scan, and his bone scan looked good. I need help, and i love my dad. I want to give him all the support and pick up some more knowledge about this disease!

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3800
   Posted 10/22/2010 8:22 AM (GMT -6)   

sorry to hear about your father.  what is his age?

i have an older customer who recently shared that he has PC. he was diagnosed as a gleason 9 with a psa of 20.  he was diagnosed several years ago and they started him on HT.  in a couple years the HT no longer worked so he had BT and IGRT (two years ago).  he's 82 now and i believe his PSA has risen slightly and he's taking casodex.  he said that he was going to the doctor that day because he just started having hot flashes.

i won't tell you i understand his treatment strategy.

when i was undergoing IGRT i met plenty of older guys and many of them had high gleasons and PSAs.

ed


age: 55
PSA on 12/09: 6.8
no symptoms, no prostate enlargement
12/12 cores positive....gleason 3+4 = 7
HT, BT and IGRT
received 3rd and last lupron shot 9/14/10

don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 10/22/2010 8:24 AM (GMT -6)   
Hi Lynn,
 
Your Dad has options. At this point I would say all options... surgery, radiation, and hormones. There are a number of sites that have a good deal of information regarding PCa. National Institute of Health is a good one so is PCRI (prostate cancer research institute). Just google either with PCa and you will be flooded with information. Be aware that some info on the net is old. I restricted my own research papers published in the last five years and much has happened since my own diagnosis.
 
Most important thing right now is to "characterize" the disease. Is it local, has it spread, and so on. What is the state of your father's health? Age? Have you sought and recieved a second opinion from another urologist or oncologist?
 
 
 
Diagnosed 04/10/08 Age 58
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
IGRT/IMRT with adjuvant HT (lupron) 2yrs
PSA:
02/08 21.5
07/08 0.82
10/08 .642
09/09 0.32
03/10 0.32
06/10 0.32
07/10 0.10

Alegar
Regular Member


Date Joined Oct 2010
Total Posts : 91
   Posted 10/22/2010 8:30 AM (GMT -6)   
Hi, Lynn:

I just went through surgery and recuperating.

I know this can be overwhelming - sort of like trying to take a sip from a firehose. Please refer to GUIDE TO SURVIVING PROSTATE CANCER by Dr. Patrick Walsh. My wife bought this and I could browse through and find info pertinent to my situation. It put many fears at ease.

Please let us know what is going on and I wish you and your father all the best.

Alex
54 year old 188 Lb. 6 ft. Male
White Hispanic, Athletic
Diagnosed July 1, '10 with PC,
PSA 3.88 Gleason 3+3, 2 out of 12 samples positive
DaVinci Oct 1 '10

AIRBORNE ALL THE WAY!

Lynn01
New Member


Date Joined Oct 2010
Total Posts : 5
   Posted 10/22/2010 8:39 AM (GMT -6)   
My dad turned 60 this past April. The doctor told him it is Stage 1 PCa. His overall health seems to be ok. He gets up in the middle of the night to urinate, and I know he was some joint pain, but nothing to severe. The doctor told him that it hasn't spread anywhere, and I looked at his bone scan report and his scan was good. My dad told me that the doctor wants him to do the hormone therapy. He said it will help stop the spread. Im just confused. Can you have stage 1 PCa with a Gleason of 9? I've been doing alot of reading, and there has just been cases of Gleason 9 with stage 3. Im just afraid my dad is not telling me everything. I don't want to upset him with all these questions but im just concerned

Lynn01
New Member


Date Joined Oct 2010
Total Posts : 5
   Posted 10/22/2010 8:51 AM (GMT -6)   
Thank you again for responding. Its really nice and comforting when you can get support like this.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6948
   Posted 10/22/2010 9:02 AM (GMT -6)   
Gleason scores are determined by examining tissue. That can be from a biopsy, where the T (stage) is more speculative, or from a post-op pathology, where they have the whole organ to examine.
 
T (stage) pre-op has to do with how palpable it is on a DRE, and if the cancer is known to be out of the capsule (hence bone and CT scans).
 
So, you could be initially T1 (stage 1) with a Gleason = 9. That means there was nothing obvious in the DRE, but that something was found in a biopsy.
 
Post-op T is determined by the pathologist.
 
My pre-op was T2a (the uro could feel abnormalities in the DRE), Gleason 4+4=8; post-op was T3a Gleason 4+5.
 
There is a good explanation in the "Cleveland Clinic Guide to Prostate Cancer" (2009).
 
The Walsh book already mentioned is the best book, but this one is a good summary with diagrams approach.

Lynn01
New Member


Date Joined Oct 2010
Total Posts : 5
   Posted 10/22/2010 9:19 AM (GMT -6)   
Thank you so much. I will have to check that out. I will doing more research tonight and to further my knowledge. Again, this news is new to me and I am just trying to help my dad because i don't want him to think that since he has the big "c" that it is the end. I want my dad to be around for a long time.

BillArb
Regular Member


Date Joined Jun 2010
Total Posts : 35
   Posted 10/22/2010 10:44 AM (GMT -6)   
You might also want to buy your Dad a copy of Walsh's Book that was mentioned in a number of the above posts. He would do well to seek a second opinion about his treatment options. I think that a large percentage of the men who post on this forum sought second opinions before undergoing treatment.

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6948
   Posted 10/22/2010 11:01 AM (GMT -6)   
Lynn,
 
You might try a local library for these books just as a start, but I've found that having a copy is better.
 
Check online at www.ustoo.org. If there is a nearby chapter, contact the co-ordinator. Depending on the finances of the chapter, they may have reference material to loan or give you. The on-line site has a lot of information. They have a monthly "Hot Sheet" with current articles.
 
If there is not a local chapter, check for a state prostate cancer foundation office. My copy of Walsh, and several other books, were long term loans - ok, they didn't really expect to get them back, but I am "paying out" my loan with some volunteer work.
 
If all else fails, and you have a state or university medical center nearby, call and ask about cancer support programs for family.
 
Lance Armstrong's foundation will also send some general material that is generic to all cancer patients. They sent a diary - you would be surprised how many things get lost on scraps of loose paper.
 
Just some thoughts -
 

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 10/22/2010 11:18 AM (GMT -6)   
Lynn,
After my DX I was T1c with Gleason 8 and 9. The doctor didn't feel anything during the DRE and my bone and CT scans were negative. I opted for surgery. The pathology report confirmed the gleason 8 and changed the staging to T3A because the cancer was found in both lobes of the prostate. Your dad has all options on the table. HT therapy is normally recommended when the cancer may have metastasized which makes surgery pointless. It is also used when other treatments have failed. HT itself doesn't offer a cure but it can keep someone alive for many years.
Age: 67 at Dx on 12/30/08 PSA 3.8
2 cores out of 12 were positive Gleason (4+4)
Davinci surgery 2/9/09 Gleason 4+4 EPE,
Margins clear, nerve bundles removed
Prostate weighed 57 grams 10-20% involved
all PSA tests since (2, 5, 8, 11, 15, 18 months) undetectable
Latest PSA test (21 months) .005

pipedream
Regular Member


Date Joined Aug 2010
Total Posts : 64
   Posted 10/22/2010 12:11 PM (GMT -6)   
Your dad is on the young side for being diagnosed with PCa (our uro doc said average age at diagnosis is 72). If your dad is healthy otherwise, he has a life expectancy of more than 20 years. Personally, I don't think he should be messing around with any treatment that isn't aimed at a cure....and hormone therapy from what I understand is not considered curative - it merely slows down the growth of the cancer.

My husband was diagnosed at age 64 and our urologist was very forceful in urging him to have the surgery because he is very likely to live longer than the 10 to 15 years other treatments might provide in longevity.

You are right to research and find out all you can about the stage of his disease and what treatment options there are. I think it would be very difficult for your dad to do this all on his own though many men who participate here do take a very active role in figuring out everything for themselves. However, I and other wives who post here for their husbands are testimony to the fact that some men just don't want to deal with the research, bewildering array of options all by themselves and/or are not comfortable posting on forums about such a personal matter. You sound like a very loving daughter - your dad is fortunate to have you in his corner.
Husband DX @ 64; 7.5 year survivor colon cancer; father had PCa @ age 65
04/09 - PSA 3.06
10/09 - PSA 1.55
04/10 - PSA 4.26

Biopsy 7/10 Gleason 7; 3+4 & 4+3 - 6 of 10 cores

RRP - 10/1/10; Gleason 3+4; 20%; pT2c; contained, clear margins

Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3218
   Posted 10/22/2010 12:11 PM (GMT -6)   
Hi lynn, Its not the end of the road. H.T. is a good start. if the tumor is confined it will shrink it and make surgery easier. If it is not confined there are other options but most start with h.t. I myself am gleason 7 but my initial psa was 3216.17 It has been 5 years and I am still doing well. I am now 47 years old. Take a deep breath. Relax. Its a battle but there are many more victories than even 10 years ago. God bless you and your dad. Todd
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months
Cat Scan 12/12/08 Prostate normal size and shape. No tumors detected. Left lung clear of all nodules right lung showing only benign scar tissue. Lymph nodes normal
Bone Scan 12/24/08. Clean!!! went off casodex January 4 2009
Current psa 2/13/09 .16
Latest P.S.A. 0.05 newest P.S.A. undetectable

Lynn01
New Member


Date Joined Oct 2010
Total Posts : 5
   Posted 10/22/2010 12:41 PM (GMT -6)   
THANK YOU ALL SO MUCH FOR YOUR RESPONSES! I am looking through loads of websites and going to the library in a few. I told him that I will support him with whatever path he chooses but I will offer him my advise as much as I can. I will update again when he has his appointment. I believe his appointment is early next. Here to the first step of a very long journey!

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 10/22/2010 3:01 PM (GMT -6)   
Prepare for brain overload and brain drain and don't let emotion or good sales pitches throw you a curve, the docs are not all experts and disease is not at all simplistic. Your task is omnious, best to you, he will need all the options discussed. The good news is controlling of PCa may exceed your expectations.
 
PCa University (LOL)-  www.yananow.net       www.prostate-help.org   www.ustoo.org   www.phoenix5.org 
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Putt
Regular Member


Date Joined Aug 2010
Total Posts : 154
   Posted 10/22/2010 3:15 PM (GMT -6)   
Todd
During the past 6 years, I have heard hundreds of personal stories and read thousands of posts from individuals who are doing battle with PC.  I have NEVER heard a story equal of the great success that you are enjoying.  All this with only Lupron and Casodex?  Surely there is more to this story.  Whether there is or not, makes not a lot of difference.  You have made a miraculous recovery, which is an inspiration to us all.
PSA at Dx 105 at age 68, 4/04. ADT (Lupron only), RRP, 5/04. Gleason 4+5=9, Staged pT3c N0 MX, 3D rad, 40 treatments, 8/04. PSA 1/05 <0.01. ADT till 7/07. PSA 0.03 12/08, 0.07 4/09, 0.13 8/09, 0.19 12/09, 0.30 4/10, 8/10 0.41. Will start ADT3 after PSA reaches 1.2.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3742
   Posted 10/22/2010 5:31 PM (GMT -6)   
Lynn, the Gleason 9 is aggressive, high-risk cancer..The PSA of 10.3 while not wonderful is not a disaster either..

Starting HT now can not hurt anything and will suppress but not CURE your fathers cancer..From what you have told us, a cure might still be possible and is CERTAINLY worth pursuing. The combination of seeds and beam radiation has had very good success with high-risk PC like your Dad has..

One downside of starting HT now is that it can lower the PSA to very low levels, making it very difficult to judge the effectiveness of other treatments should he choose to be treated with the intent of being cured...

Read Walsh's book and have your Dad read it...Gleason 9 can be a tough fight, but it's not hopeless...This board has many members who were G-9 and are now 5 years or more out and are doing fine...
Age 68.
PSA at age 55: 3.5, DRE normal. Advice, "Keep an eye on it".
age 58: 4.5
age 61: 5.2
age 64: 7.5, DRE "Abnormal"
age 65: 8.5, " normal", biopsy, 12 core, negative...
age 66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
age 67 4.5 DRE "normal"
age 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
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