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Posted 1/9/2009 11:13 AM (GMT -7)
My husband just had his first PSA. It is 87.61 !!!!! I am scared to death. I am an RN and I know that it is very probable that he has prostate cancer but how aggressive. Anyone had a PSA this high/
Posted 1/9/2009 11:25 AM (GMT -7)
Welcome to the site...and sorry you have to be here... That has to be the highest number I've seen...But, instead of people guessing...I'm sure you're seeing a Urologist etc...He/she will probably want to do a biopsy....Just hand tight till those results are back. How old is hubby? Age 53   - 5'11"   205lbs Overall Heath Condition - Good PSA - July 2007 & Jan 2008 -> 1.3 Gleason - 6 (biopsy done March 4, 2008-> 2 of 12) 06/25/08 - Da Vinci robotic laparoscopy 10/03/08 - 1st Quarter PSA -> less then .01 Surgeon - Keith A. Waguespack, M.D. Las Colinas and Plano Offices  
Posted 1/9/2009 11:30 AM (GMT -7)
He is 62 and in otherwise good health. He began having trouble with urination and erectile dysfunction about a year ago. Finally convinced him to see a physcian. This does not look good. It will be a long weekend. The results were so high that I questioned them with the lab.

Posted 1/9/2009 11:38 AM (GMT -7)
Dx 4/21/08 psa 9.7 58 years old
Biopsy results 3 areas of 3+3=6 gleason
Di Vinci surgery 6/3/08
Post op 3 months and 6 months - all clear
0 psa

I have never heard of that high of a psa. I was terrified too when I thought I had prostate cancer, and even more when got the results. But now 6 months later I am fine, the post op problems that I have are nothing compared to having cancer.
Will pray for your family, trust in God.

Did hubby have yearly psa tests?

We men can be stubborn, I know guys who won't go to the doctor for anything.!
Posted 1/9/2009 11:53 AM (GMT -7)
No this is his first one. I am so scared and I know he is.
Thanks so much for your concern.
Posted 1/9/2009 12:10 PM (GMT -7)
Not to trivia-lize your psa it can be 9000-10,000 level I heard of a case where it was around 9,000 psa level; Robert Young founder of www.phoenix5.org was diagnosed with psa (pegged the assay machine or such at over 3000) and only because he had bone pains was he diagnosed(mets) lived approx. 3 yrs. thereafter on various protocols, great guy he started the first PCa laymans dictionary, so we all could understand the doctor language and abbreviations his little booklet is in libraries and registered with National Govt. Library system. He offer his book to others on a donation basis, he was not looking for profit only to serve and give knowledge (amen to this pioneer warrior).

Robert was a great fighter and humanitarian for this book on his own doing, he is one of the first people I met on my journey almost 7 yrs year ago. I think his website is still on www.phoenix5.org  his wife is likely still with us today.

You could have prostatitis going on and/or combined with PCa to influence that number, that number does not reveal PCa or define any quantity thereof, the biopsies are used therein and gland size, gleasons scores after pathology is done..then you can have or may get an informed idea as to what you might be facing (doctor may sage you in many cases...my uro-doc either couldn't or didn't stage me(probably couldn't), and even then it lacks precision, for various reasons: pathology needs reviewed by experts i.e. it is an art and few are experts, secondly biopsies can miss regions easily  (not to make us feel sweet right now, it is what it is) and other parameters that make this disease like from the Twlight Zone. Also, there are atleast 18 variants of prostate cancer, likely only the experts can decipher which one you are dealing with.



Anyway I (zufus) was diag. with psa of 46.7 (bpsa) first psa ever, I am here almost 7 yrs. later, and I had omnious stats found (12/12 pos. biop. 75-95% in everyone of them-might as well say the gland was full of it-just like what I think about PCa) gleason grades 7,8,9's found (I started with total urinary blockage and drove myself immediately to  emergency room for whatever they could do- no clue)....YOU GOT HOPE!!! Sometimes it is darkest before dawn.

zufus-neutrondbob    (don't panic, analyze then fight the beast)

"Youth is wasted on the young"-W.C. Fields

 

"I wouldn't join a club that would have me as a member"-Groucho Marx

Post Edited (zufus) : 1/10/2009 4:34:02 AM (GMT-7)

Posted 1/9/2009 12:27 PM (GMT -7)

aqha

You have come to the right place. There are so many caring people here who will help you get through the shock and fear. Zufus' post is encouraging. I have seen stories of PSA levels as high and higher than your husband's who had many years survival. Treatments are improving every day.

It is easier said than done, but until you get a biopsy and some firm data, the worry and anxiety is wasted effort. I did the same thing; worry under these circumstances is human nature.

Just know you are not alone and many of us will be offering our positive thoughts and prayers as you wait...which is the hardest part.

Bless you,

Bill in San Diego

---

Age 59 at diagnosis (Now 60) PSA 4.4

05/15/2008 - Biopsy (Gleason 3+3=6)

Most cores positive 40% or more, some 100%
Bone scan and pelvic/abdomen CT: clear
06/15/2008 – Began two months Casodex 50 mg HT
07/01/2008 – Trelstar HT shot (3 month dose)
09/15/2008 – Retropubic Radical Prostatectomy

Post Op Pathology: Staging pT2c pN0 MX

Post Op Gleason: 3+4=7

No discrete tumor mass, Bilateral involvement

No capsular penetration (carcinoma extends into but not through capsule bilaterally)

Seminal vesicals, perineural margin, 18 lymph nodes and bladder neck: all carcinoma free

Perineural tumor invasion (PNI) and Distal (Urethral) Margin: Carcinoma present

10/13/2008 - PSA <0.1 - (Disclaimer: HT may have impact on "true" PSA level - but YEAH for the <0.1)

12/08/08 - Began 35 treatments IMRT (adjuvant radiation for positive distal margin and PNI)

 

Blog: http://williamjenkinsjournal.blogspot.com

Posted 1/9/2009 1:03 PM (GMT -7)
Thanks to everyone. I guess the fact that I am an RN that this just scares me to death even more so than my husband. Monday will not come soon enough for me. I had just never seen a PSA as high as his. Thanks so much for caring. I know that all of you have been through this same thing.
Posted 1/9/2009 1:56 PM (GMT -7)
I will sure send prayers your way too. I am scared probably more tan my husband although he would not show it anyway. I just want to get this diagnosed and get ready to battle it. What was your initial PSA level?

Thanks so much for your concern.
Posted 1/9/2009 2:27 PM (GMT -7)
aqha,

After reading your post, I was sure I'd seen higher PSAs mentioned, so I looked around. There's a fellow member who goes by "living1963", whose signature says "P.S.A. at time of dx. 3216.14". That was in June 2006. The last post I saw from him was just 3 days ago. Maybe he will see your words and have something to say.

living1963, are you there?
DJ

Age 53
PSA 2007 about 2
PSA 2008 4.3
Diagnosed September 2008.
Biopsy: 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 removed on 7th day, replaced on 8th day, removed again 14th day following negative cystogram
pT2c
lymph nodes negative
microscopic margins
next PSA 1/22/08

Posted 1/9/2009 2:43 PM (GMT -7)
Thanks so much for the information about the PSA. I know Paul's is really high but it is reassuring that there have been much higher with good results. I appreciate all the support that I have received from this forum today. It is making it a little easier.

Thanks
Posted 1/9/2009 3:23 PM (GMT -7)
aqha,
Sorry you had to come but welcome to the site. DO NOT PANIC!! There are many great people on this site including other wives who are also RNs and who have walked the path it looks like you may be about to take. They are all anxious to help. You might find it beneficial to have a look at PCa patients treatments and outcomes on the "yananow" which breaks down their charts of many, many patients by age or diagnosis date or gleason or PSA reading.
See PSAs here low to high.
www.yananow.net/Chart-PSA.htm
Have a look there at Trueman Seamans story, diagnosed in 1999 with a PSA of 4,212 and still going strong.
I can highly recommend yananow's guide "A Strange Place"
www.yananow.net/StrangePlace/index.html
as a marvelous and informative guide aimed specifically at the newcomer to this journey.
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)

Post Edited (BillyMac) : 1/9/2009 3:26:31 PM (GMT-7)

Posted 1/9/2009 6:08 PM (GMT -7)
As you can see by now the responses and love are incredible. My small tidbit of advice would be to get yourself educated ASAP so when you do see the doctor you will be at least educated enough to ask the right questions. Once all the data is collected and your doctor has shared his or her infinite wisdom and with the new found knowledge you will have then and only then can an effective battle plan be mapped out. I am saying this assuming he has PCa. I pray he doesn't but be prepared if he does. This is a battle that can be fought and won trust me on that one because many of your comrades here on HW (me included) are proof that life goes on and believe it or not might even be better. Before I go spiritual on you I will just stop. please know I care and will be there for any support you need.

peace and love
Dale
My PSA at diagnosis was 16.3

age 46 (current)

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

My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8

I had 44 IMRT's

Casodex

Currently on Lupron

I go to The Cancer Treatment Center of America

Married with two kids

latest PSA 5-27-08 0.11

PSA July 24th, 2008 is 0.04

PSA Dec 16th, 2008 is .06

Testosterone keeps rising, the current number is 156, up from 57 in May

cancer in 4 of 6 cores

92%

80%

37%

28%

Posted 1/9/2009 6:20 PM (GMT -7)
Thank you so much for the support. It will be a long weekend.
Posted 1/9/2009 7:02 PM (GMT -7)

Hi aqha,

Once again, welcome.  Ditto Dale and the rest above.  Thought you were done studying?  Your new education course starts now.  There should be college credit given for this class.

The uro. will probably want a biopsy done.  Get at least 12 samples to be sent to pathology.  He may also order a bone scan and CT pelvic scan if the biopsy comes back positive.  This will check for metastisis.I don't want to speculate any further until we hear from you later.  DOn't be a stranger.

Bob

 AGE:57

 Dx: October,27(the day after my birthday)

 Psa 14.5

 Gleason:(4+3) 7 T1c

 Bone scan:Negative

 Cat scan: Negative

 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.

 Confined to prostate.

 DaVinci scheduled for Jan. 19, 2009.Dr. Scott Montgomery, KC Urology,

Shawnee Mission Med. Center. Kansas

Posted 1/9/2009 7:25 PM (GMT -7)
hello and welcome aqha, I agree with the others advice, sure your husband will be with a urologist, and would think if that psa score is accurate, would definitely do a biopsy. There could be other non-cancerous reasons for such a score, but think that might be unlikely. This is the best place on the web to be for support, questions, answers, venting, etc. We are all in this together, one way or the other. Not a club you would choose be in, but if you qualify, you wouldn't want to be anywhere else.

Try not to get worried sick until you get some hard core tests done, and even then, there are plenty of choices and opinions to work through.

David in SC
Age 56, 56 at DX

PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4

3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4

Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/9/9 - pre-op, 1/13/9 - corrective operation scheduled at St. Francis

Post-surgery Pathlogy Report:

Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer

Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.

First PSA Post Surgery  Scheduled now for 2/9/9

 

Posted 1/9/2009 7:32 PM (GMT -7)
Thanks to both of you. I hope that the urologist will do the biopsy with the first visit but i doubt that. I work at the same hospital that the surgery will be done.
I pray that the tumor is encapsalated wit wide margins. That is what I am praying for. Actually I am praying for a begnign finding but I am afraid that will not be the case.
All of you have made me feel like I am welcome and I so appreciate that. You will be one of the first ones to know the results.

Thanks again.
Posted 1/9/2009 9:36 PM (GMT -7)

Ohhhhhhh, I know how worried you must be. I am an expert at worrying...(At least my wife who is an RN like you thinks that I am.)

The docs thought I had a prostate infection as my PSA would fluxiate whether I was on antibiotics or not. Mine started rising fast is why they caught it. But after much worrying, I had surgery and so far everything seems really good.

First thing is to get lots of info. Get your questions answered to the fullest. If for some reason you do not like the answers you get or lack or answers, get a second opinion.

Do your research on surgery if it should come to it. Be sure the surgeon has done the surgery hundreds and hundreds of times. Experience is crucial in this surgery.

And don't panic. This only makes each of you uptight. And as others have said, there are other reasons. And if it is PCa, there are many options out there. Surgery is only one of them. I went to a Prostate Cancer Seminar put on PCRI in Los Angeles. There were many guys there with high PSA's. Some in the hundreds and a few in the 1000s. I didn't know they could be so high until we went to the classes.

Keep asking questions and seek out those docs next week. We are here for you and will remember you with our prayers.

Don't get discouraged!!

CalifGuy

Diagnosed Feb 2008  54 years old

3+4=7 gleason

7.5 PSA

4 out of 20 biopsies were cancerous

daVinci Robotic surgery July 24, 2008

Univ of Calif San Francisco Med Center  Dr Peter Carroll

In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.

Contained in prostate, not spread

Six weeks post surgery PSA less than .01

Five month PSA less than 0.1  Lab did wrong type of PSA test so this test was not as accurate.

Posted 1/9/2009 11:58 PM (GMT -7)
Hi aqha,
Welcome to HealingWell. We actually have quite a few guys here with PSA's at or above your husbands. Like zufus says there is a member who was as high as 3200 and is now showing signes of remission. First, your husbands PSA is quite high and there is a sign of local spread or metastasis. But the good news ~ this can and will most likely be managed for years. As you see there is some great supporters here and we will all do our best to answer from our experiences. Fear is understandable, but knwledge is a great remedy for fear. I have advanced prostate cancer and I went through these feelings. I believe in the power of positive thinking and I made it my motto soon after I was acclaimated with my diagnosis. Stay Positive! Learn! Get a plan together! And believe! When you do these things you will find that fear is a waste of time. So will your husband, too. So break out the pencil and paper, and read more about prostate cancer and advanced prostate cancer. Not only do you want to study a front line treatment, you also should read into second line treatments. I would also contact a major cancer center and/or a strong prostate cancer oncologist. Write down your questions, and bring that notepad to every interaction with your doctors. You are an RN, but it is easy to forget your training when you are attached emotionally. I have seen doctors become unsure of what to do with their prostate cancer when their specialty is elsewhere, and my oncologist told me a story about a prominant doctor who went with more aggresive treatment than he recommended because he feared the diseases return.

And for support? You just picked a great site. I personally feel that HW is the best site on the internet for caring and compassionate support. I am a member of several sites, too. This was the place for me.

Tony
Age 46 (44 when Dx)

Pre-op PSA was 19.8

Surgery on Feb 16, 2007 @ The City of Hope

Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)

Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx

HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)

IMRT radiation for 38 Treatments ending August 3, '07

Current PSA (September 17 '08): <0.1 ~ Undetectable!

You can visit my Journey at:

Tony's Blog

Tony's Prostate Cancer InfoLink Page

STAY POSITIVE!

Posted 1/10/2009 2:02 PM (GMT -7)
Personally i would just wait for the results of the biobsy. Last Month my father visited his doctor because he was going to the bathroom a lot, and the doctor sugested a PSA test.

A few days later his results came back and the doctor told him that his PSA level was 13.

I started to read a lot on the subject and discovered that this was deemed to be high considering a man of his age should be around 4.

Then i found this site and read a lot of info about people who have been diagnosed with really low PSA levels????? in some cases under 4 !!

Anyway my dads results came back and his prostate is enlarged and has been put on a course of tablets. nothing to worry about

There are lots of things that can cause a high PSA level so try not to panic until you get the results. You can see from what some of the guys have said on here that they have had higher PSA level than your Husband and are still around ten years on.

I wish you all the best
Posted 1/10/2009 2:18 PM (GMT -7)
"As you can see by now the responses and love are incredible"

Yes, Dale, the answers by some of our "experts", who've never heard of a PSA that high, are incredible and, I'm sure, scared the hell out of aqha.

Please, guys, if you don't know what the hell you're talking about, don't offer a newbie advice.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!

Posted 1/10/2009 6:39 PM (GMT -7)
From a wife: Jump onboard....It's a wild ride......You are in the driver's seat......Di (This may scare Les)
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Forging ahead to health!

Posted 1/12/2009 2:01 PM (GMT -7)
87 seems low to me - my husband was diagnosed at 750 at age 51 in August 08. He just had his second lupron shot and tests before that showed it had dropped to below 7. This is all horribly scarey the thought of loosing your husband much sooner then you ever could have realized but there are lots of medical advancements right on the horizon and many people live for years on hormone therapy. After he has the rest of his scans etc. you will know more where you stand if he has advanced prostate cancer or has the option for other treatments.
Posted 1/12/2009 4:57 PM (GMT -7)

Hey aqha,

  Names Todd. I'm the guy diagnosed at 3216. 32 wonderful months ago. I am 45 yrs old. My wife is an lpn and she was also quite worried. Pca sucks and there is no denying it but it is just a road that some must travel. I am now at 1.49 psa. I still have a prostate. Read my signature. My onco wants me off the meds so I am no being weaned so to speak. I know its hard but dont worry. Its not easy but there are good people here who will help. Feel free to E-mail me any time 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!!!

Posted 1/13/2009 9:41 AM (GMT -7)
We went to the urologist yesterday. He is not an oncology urologist. He suggested biopsies. We agreed (I knew that was coming). I suggested to do the bone scan and pelvic CT. I told the dr that you know you are going to order them so just go ahead and get them done. The scan and CT scheduled for tomorrow and the biopsies Friday. I have already scheduled a consult with an oncology urologist who has been highly recommended to me for Feb.2. Need to get idea of all options. You all have stressed that to me and I followed your advice.
That is where we are and please pray that this all goes well. Any other recommendations would be greatly appreciated.
My husbands starting PSA drawn two weeks ago was 87.61. enlarged prostate confirmed with DRE.

Thanks so much for this forum and your support.
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