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

     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.

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

Am I reading this right, the PSA went from basically 1.5 to 8.5 in just seven months?

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

Hope is eternal.

Post Edited (zufus) : 4/10/2011 3:15:52 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.

IU Simon Cancer Center (Indianapolis) is a National Cancer Institute.

Hero

havit:

That's quite an improvement. What tx?

Mel

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!!

 

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

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.