Dad was just diagnosed with prostate cancer with mets to the bone.

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Harriett
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Date Joined Apr 2011
Total Posts : 12
   Posted 4/9/2011 4:09 PM (GMT -6)   
     Hi, My dad was just diagnosed with advanced prostate cancer.  It came as a complete shock.  He is 64.  He had a PSA in August that was 1.41.  He started having some urinary symptoms in Feb so he had the PSA redrawn and it came back 8.45.  After a round of antibiotics did not affect the PSA, he had a bx done which came back 9 samples with cancer out of 12 samples taken.  Gleason score 9. 4+5.  He then had a bone scan done and this is when the real shock came-  it showed exstensive mets to the bone. Hip,pelvis,thoracic and lumbar spine, and in the ribs.  We have seen 2 doctors now and in July will have a visit with a medical oncologist.  He recieved a hormone injection shot the day the 1st dr gave us the unfortunate results.
     My real question is, could the bone scan be wrong, we are told that most men with PCA this advanced have a much higher PSA?  How can he have that much cancer in is bones and not be in such pain?  Is all hope lost or can these be "managed" as we were told possible for several years?  We were told his only option at this point was hormone therapy since the cancer has already spread so rapidly, with chemo being an option later down the road.  Any answers you can offer would be appreciated.  I don't want to lose my dad anytime soon, nor do I want to see him suffer a terrible death.
       Thanks,
a very concerned daughter.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 4/9/2011 4:14 PM (GMT -6)   
Harriet, welcome to the Forum, so sorry you have to be here, but glad you found us. I can't address your bone scan and mets question, but there's a bunch of guys here who have the experience to give you some guidance and info.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RP, Path: pT2c, 110 gms., clear except:
Probable microscopic involvement-left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09, 12/10-.09, 02/11-.08
ED-total-Bimix 30cc

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 4/9/2011 4:44 PM (GMT -6)   
Hi Harriett
Welcome to our group. First stay positive. There are many things that can be done to get the disease under control, but I won't kid you it will likely be a bumpy road. Prostate cancer that has metastasized to bone is not a curable condition. But since I started out with my journey over 4 years ago I have met many like your father and they are still hanging around and some of them are doing very well. The bone scan is a very basic test to see hot spots of the disease. It could be in error but not likely. Given the number of positive samples, the Gleason grade, and the PSA it is likely accurate. Hormonal therapy is a proper step and your father may be eligible for a clinical trial as well.

From this point on your father should be under the best care available. If you state where you are located I am certain that one of our members can tell you where a top gun might be located.

I have worked in advocacy of this disease since 2007 and I run a support group here in Las Vegas. I have seen cases like your fathers respond very well to treatment. Some guys have lived for a decade or more. Learning about the disease is very important and knowledge will be of immense help. Even if it is you that is learning and passing the ideas along. The initial shock will pass and it's important to keep looking for solutions.

Some of our members will be chiming in with valuable information as well so don't stop posting. You can also get into the Prostate Pointers Mailing List (PPML) located at www.ustoo.org.

You can sign on here:
www.ustoo.org/Prostate_Pointers.asp

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

davidg
Veteran Member


Date Joined Feb 2011
Total Posts : 4093
   Posted 4/9/2011 5:33 PM (GMT -6)   
Harriett:

I spent countless hours reading testimonials from all sorts of patients when I found out I had cancer some 6 months ago. During that time I read many great testimonials/stories from people who had been managing this disease for more than a decade even when in an advanced stage. Here is one good example:

http://www.yananow.org/Mentors/TomJ.htm

Hope it helps. It also mentions a clinical trial your dad might qualify for in Alabama.

Squirm
Veteran Member


Date Joined Sep 2008
Total Posts : 744
   Posted 4/9/2011 6:24 PM (GMT -6)   
Am I reading this right, the PSA went from basically 1.5 to 8.5 in just seven months?

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3784
   Posted 4/10/2011 12:05 AM (GMT -6)   
Squirm asks a very pertinent question. Even the most aggressive, the most virulent prostate cancer seldom if ever moves this fast..To go from a PSA of 1.50 to G-9 with bone mets in just 7 months is unheard of. If what you posted is correct, you need to see some new doctors..Waiting until July to see a medical oncologist? Your Dad should see one next week. Is insurance a problem that is delaying treatment and second opinions?.
Age 68.
PSA age 55: 3.5, DRE normal.
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 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 4/10/2011 6:17 AM (GMT -6)   

I try to be useful and get no where....so revised it to reflect the appreciated content. cool

Hope is eternal.

 

Post Edited (zufus) : 4/10/2011 3:15:52 PM (GMT-6)


Harriett
New Member


Date Joined Apr 2011
Total Posts : 12
   Posted 4/10/2011 2:01 PM (GMT -6)   
Squirm, yes you read it right PSA went from 1.41 to 8.45 in 7 months. Fairwind, my dad did get a 2nd opinion at the IU Medical Center last week with the head of urology last week. He said that the treatment we recieved here is the standard treatment for his stage etc. He did tell him that he didn't need to see a urologist anymore but needed to see a medical oncologist and hooked him up with someone from the University that specializes in urological cancers. He did ask if the dr here gave him Casodex, which he did not and seemed fine with that. The dr seemed fine with the hormone shot he received here as the treatment he needs thus far. He did seem concerned that he had so much mets to the bone with a PSA of 8.45, he said that usually it is much higher in someone who has this much cancer. That worries me. I just wonder if it was possible that he had the PCa back in August even though he had a normal PSA? He says he wasn't having any symptoms then, just routine yearly blood work he always has done. He feels fine and isn't having any pain. Its hard for me to believe that he could have that much cancer. As far as joining support groups and what not, he hasn't done that and hasn't even done any online research, he says he doesn't want to know. I have been doing my own research for him.

proscapt
Veteran Member


Date Joined Aug 2010
Total Posts : 644
   Posted 4/10/2011 2:49 PM (GMT -6)   
Harriett, your father's stats suggest that his is not an ordinary garden-variety prostate cancer but an unusual variant that is fast-moving and throws off little PSA relative to its size. That says you need to hurry up to a medical oncologist who specializes in prostate cancer and sees all the unusual cases, not someone who treats prostate cancer on an occasional basis along with a broad range of other oncology patients. If your post your geographical location people can offer you recommendations.
DX age 54 12/2009
PSA 5.6, DRE-, high pre-op PSAV. Clinical stage T1c
Biopsy: Gleason 3+4 with PNI / 6 of 14 cores + / 10% of total length + / worst 45% +
DaVinci RP 2/2010
pT2cNx / Gleason 3+4 / PNI+ / SM- / SV- / EPE- / Tumor vol 3cc / vol 40cc / 63 gm
PSA - 4/10 <0.01, 8/10 0.01, 12/10 0.01, 3/11 0.01

Harriett
New Member


Date Joined Apr 2011
Total Posts : 12
   Posted 4/10/2011 7:23 PM (GMT -6)   
I live about 60 miles west of Indianapolis, Indiana

Herophilus
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Date Joined Sep 2009
Total Posts : 663
   Posted 4/10/2011 7:56 PM (GMT -6)   
IU Simon Cancer Center (Indianapolis) is a National Cancer Institute.
Hero
Age 51 PSA 6.8
Bxy 10 of 12 Cores positive for Gleason 6. up to 75%
Robotic surg 11-02-09
Post op path. 20% neoplasm;4+3=7 Gleason
All nodes (14) and other related tissue negative for cancer
No EPE
Post op PSA x 3, all <0.01
walkbobwithjack.blogspot.com

havit2
New Member


Date Joined Oct 2010
Total Posts : 11
   Posted 4/11/2011 10:57 AM (GMT -6)   
I am sorry to hear of your fathers condition and even though a cure for his stage disease is not likely he can be treated effectively. I was dx with stage 4 Pca in January of 2010, my PSA was 980.  In December 2010 my PSA was less than 0.1, non detectable. At dx my bone scan showed hot spots in my legs, pelvis, spine, ribs, arms, neck and skull. I had lost 30 lbs and was in extreme pain. Today I am feeling almost normal, able to work every day and spend quality time with my family.
 
Your father should consider all options and which  will offer the best quality of life for him. There are new treatments available and more awaiting approval from the FDA. There is hope, and here there are others who share similar experiences.
 
My prayers and best wishes are with you and your family 

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7213
   Posted 4/11/2011 11:51 AM (GMT -6)   
havit:
 
That's quite an improvement. What tx?
 
Mel

havit2
New Member


Date Joined Oct 2010
Total Posts : 11
   Posted 4/11/2011 12:39 PM (GMT -6)   
I had an orchiectomy. I am also on casodex

Concerned4You
Regular Member


Date Joined Dec 2010
Total Posts : 94
   Posted 4/18/2011 9:10 AM (GMT -6)   
Harriett:
 
Welcome to the forum --- and sorry you have to be here under such circumstances. I'm in a similiar situation. My father (now 66) is a G9 with micro-mets. He had DaVinci surgery only to find out it wasn't successful. Radiation is not an option for him so they started Hormone Therapy last week. It's a very scary process. He will not see the doctor again for another 4 months.
 
I understand your confusion about the PSA level. We too are confused as his doctor claims he has "Micro Mets". After surgery we knew he was staged T3b, however, his PSA was only 9.7 prior to surgery (it is now 6.9).
 
Hang in there ---- and if you haven't already buy "Surviving Prostate Cancer" by Dr. Patrick Walsh. It's full of good information.
 
Keep us posted!!
 
 

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3784
   Posted 4/18/2011 12:30 PM (GMT -6)   
"As far as joining support groups and what not, he hasn't done that and hasn't even done any online research, he says he doesn't want to know. I have been doing my own research for him."

Harriet, You must try to get your dad more involved with his treatment if he really wants and accurate prognosis..It seems he has a very aggressive form of PC that does not produce much PSA and that is how it escapes early detection. However, aggressive, well managed treatment can give him several if not many years of life...Your Dad will have to seek out the best doctors who specialize in cases like his and think outside the box to find a treatment plan that his cancer responds to in a positive way..These doctors are not going to call you, your have to call them..

"Hormone Treatment" comes in many forms and some are more effective than others..The fact that they started Lupron without first using Casodex to suppress "flare" is somewhat troubling..But perhaps they used a newer, more expensive drug, Firmagon, that causes no "flare".. It is important now to monitor both his PSA and "T" (testosterone) level to be sure the drug is working. Some men don't respond as well as hoped to these drugs and an orchiectomy must be performed to lower the "T" to near zero, to achieve maximum effect on the cancer..While most men cringe at the thought, orchiectomy is the cheapest, most effective form of HT....

After you have read Walsh's book to get the basics, there are other books written by outside the mainstream doctors who specialize in treating advanced prostate cancer with a high degree of success..The proper combination of drugs and diet can achieve amazing results but they won't come to you automatically...

Best of luck to both you and your Dad...
Age 68.
PSA age 55: 3.5, DRE normal.
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 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 4/18/2011 1:41 PM (GMT -6)   
Hello Harriet,

My dad was about the age of your dad when he was diagnosed with PCa too advanced for surgery -- and with hormore therapy, and an orchiectomy he was in fine shape PCa wise ten years later, when unfortunately his heart 'got' him. His PCa doctor said his PCa would have claimed him eventually --- but he'd have to live to 120 and not be done in by anything else before it did. Each case is very individual, of course, but there are success stories out there.

That said, I understand some really nasty PCa cases are marked by low PSA.

I can understand why Fairwind wants your dad to be more involved, and I can understand why your dad doesn't want to be. This forum tends to attact people like me, you and Fairwind who want to know and make decisions based on the most and best possible information. Given how few members are present in this forum, and others, compared to the number of people being diagnosed every day, I think it reasonable to say us info junkies are in the minority. It may be your dad's quality of life, as well as longevity, is best served by letting him follow what he is comfortable with knowledge-wise, and you being the one to do the digging.

I wish both you and your dad the best and I hope you'll keep us posted on how he's doing.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23, 2009 less than 0.02
PSA on Jan 8, 2010  less than 0.02
PSA on April 9, 2010 less than 0.02 
PSA on July 9, 2010 (one year) less than 0.02
  

Harriett
New Member


Date Joined Apr 2011
Total Posts : 12
   Posted 4/24/2011 8:33 PM (GMT -6)   
The hormone shot they gave him was "Trelstar" anyone familiar with that? I keep hearing about Lupron but not trelstar.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3784
   Posted 4/24/2011 9:28 PM (GMT -6)   
Trelstar is a drug similar to Lupron. It acts the same way. If your dad is being treated by a urologist, it's time, past time, for him to see a Medical Oncologist who specializes in treating prostate cancer..

The fact they started him on Trelstar without first putting him on Casodex for a week or two (to avoid testosterone flare) is somewhat neglectful..Others may use stronger words..What follows is a paragraph written by a urologist concerning Lupron and Casodex..Some add a third drug, finasteride, in a treatment plan called a triple blockade..Proven to be more effective than Lupron (or Trelstar) alone...

"In the previous section, we discussed how a prostate cancer that progresses after Lupron is still dependent on testosterone and outlined the various mechanisms the cancer cell uses to grow despite low testosterone levels. It turns out that in nearly every paper published on this subject, researchers added Casodex and subsequently showed that it prevented low levels of testosterone from supporting cancer growth. The concentrations of Casodex used are similar to those obtained in patients who received 150–250 mg of oral Casodex per day. I can find only one clinical trial that has tested this. Brown, R.S., et al biopsied the metastatic cancer masses that continued to grow despite medical or surgical castration and tested for androgen receptor content. In those patients where the cancer appeared to be making an abnormally large amount of androgen receptor, Casodex caused a response in 80% of the patients."

From another site..

Trelstar may cause short-term (within first 2 weeks of treatment) increases in testosterone serum levels. When this is used for prostate cancer the resulting "tumor flare" can cause temporary increase of bone pain, swelling of the prostate that blocks urine flow or swelling around tumor in the spine causing compression of the spinal cord.
Age 68.
PSA age 55: 3.5, DRE normal.
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 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0
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