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Old 07-04-2010, 02:49 PM   #1
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recently diagnosed and scared

I'm new to this board so I hope I'm doing this properly - please tell me if I'm not. I'm 62 years old, Caucasian, reasonably active and was diagnosed with PC 3 weeks ago following a routine check-up with my family doc. She called me to report a PSA of 23 and made an immediate referral to a urologist. After a DRE and biopsy, my Gleason was reported as 8. But a follow-up bone scan and MRI revealed 3 foci on my pelvic bone. The radiology oncologist said that RT was no longer an option and my only course of treatment is hormones. I've been on bicalutamide since my diagnosis and am tolerating it well. It's reassuring to read posts on this message board from men who have survived 10 years or so - much longer than the 2 to 5 years predicted elsewhere. Finally, here's my question: there seem to be two thoughts on HT. One group says keep using bicalutamide as long as it controls my PSA (a couple of years seems to be the max) and save the other drugs until needed later. The other school says to bring out all the big guns at the very beginning. I am asymptomatic otherwise.

 
Old 07-04-2010, 03:17 PM   #2
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Re: recently diagnosed and scared

There are others more knowledgeable than me in the area of HT, but everything I read is that you want to bring out all the big guns as soon as possible, that means ADT3. The idea is to attack the PC cells while the tumor burden is still low and kill as many as your can before they figure out a way to mutate. You are looking for a complete hormone blockage and a psa of .05. Your best bet is to get a medical oncologist specializing in PC as most doctors don't know how to properly monitor patients on HT. Many patients have been on HT for years with good results.
JohnT

 
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Old 07-04-2010, 05:01 PM   #3
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Re: recently diagnosed and scared

Thanks so much for your prompt post. You confirmed what I already believed: ditch my uro and head to a medical oncologist at a strong cancer hospital.

 
Old 07-04-2010, 05:20 PM   #4
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Re: recently diagnosed and scared

I am sorry to hear your news however welcome to the board. You might want to read the book Beating Prostate Cancer by Dr Charles "Snuffy" Myers. He covers hormone therapy pretty well and is considered an expert in dealing with high gleason cases such as mine. i now see him as a patient alt hough I do moswt of my consultation via the web except for my annual trek to Virginia.
Each case is different but he switched me to triple blockade and told me our target was <.01. He theory was to beat it back immediately. It worked and I have just started a holiday from casodex and lupron.
There are a number of excellent posts by Jim "ADT3since2000" if you search his posts on Itermittent Hormone Therapy.

John

 
Old 07-05-2010, 02:44 PM   #5
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Re: recently diagnosed and scared

Hi jamesrobt,

I would also like to welcome you to the board! As of this time you have two great replies from Johnt1 and GUAMJOHN. I'm a veteran of intermittent hormonal blockade therapy in my eleventh year now as a survivor, and I'll add some comments in great to an excerpt from your initial post on July 4 (in black for your text).


I'm new to this board so I hope I'm doing this properly - please tell me if I'm not. I'm 62 years old, Caucasian, reasonably active and was diagnosed with PC 3 weeks ago following a routine check-up with my family doc. She called me to report a PSA of 23 and made an immediate referral to a urologist. After a DRE and biopsy, my Gleason was reported as 8.

Do you know if the pathologist scoring the Gleason was an expert in prostate cancer? Many pathologists doing our scoring are not; they are general pathologists handling all comers: boys and girls, men and women, for all kinds of medical conditions. There is a substantial amount of undergrading going on, but also some overgrading. If your review was not done by an expert, the doctors I follow would like to have a second opinion review done by a pathologist who is expert in prostate cancer. This is important as the Gleason score is so key to decision making and case management.

But a follow-up bone scan and MRI revealed 3 foci on my pelvic bone.

I'm sorry you got such a rough introduction to having prostate cancer. Your case, with that routine check up, reminds me of me. I was stunned to find out I had a challenging case of prostate cancer when I felt so healthy.

The radiology oncologist said that RT was no longer an option and my only course of treatment is hormones.

My impression as an informed layman is that that is sound advice from the vantage point of the standard practice of radiation, and I'm a fan of hormonal therapy. However, hormonal therapy is rarely curative (chronic and controllable can be good!) , and, in the hands of experts, you still might have a shot at a cure with radiation.

That's based on emerging research for patients with just a few detectable metastases. Such cases have been given the awkward name of "oligometastatic prostate cancer," meaning just a few mets. If the rest of the cancer suspected appears to be within the range of radiation delivered by the usual methods, it is looking like the stray mets can be individually zapped and wiped out, giving a shot at cure. However, I'm not sure how the Gleason 8 finding affects this, especially in conjunction with a PSA clearly exceeding 10. There has been at least one thread or post about oligometastatic prostate cancer on this board, recently, I think.


I've been on bicalutamide since my diagnosis and am tolerating it well.

The other responders have both emphasized a combined assault on the cancer, rather than relying just on the medium strength drug bicalutamide for a challenging case. I'll join that choir! Also, some of the side effects of bicalutamide, which may not appear for a while, are often minimized or absent when the stronger drug, usually a LHRH-agonist class (Lupron, Zoladex, Viadur, Trelstar) is also used. Adding the third drug - a 5-alpha reductase inhibititor - further hems in the cancer.

It's reassuring to read posts on this message board from men who have survived 10 years or so - much longer than the 2 to 5 years predicted elsewhere.

Modern, well-executed hormonal therapy, and second line hormonal therapy as a fall-back, are often very powerful approaches.

Finally, here's my question: there seem to be two thoughts on HT. One group says keep using bicalutamide as long as it controls my PSA (a couple of years seems to be the max) and save the other drugs until needed later. The other school says to bring out all the big guns at the very beginning. I am asymptomatic otherwise.

Most men will leave doors open for the cancer if they do not use a combined approach, especially if cases are challenging. The Primer is excellent on this, as is the book "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Myers.

Good luck, and I hope you will participate actively on the board.

Take care,

Jim

 
Old 07-05-2010, 05:14 PM   #6
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Re: recently diagnosed and scared

Thanks for your posting, Jim. Your comments on this board have helped me a lot in the past few weeks. My biopsy was read by Bostwick Labs in Richmond, VA Ė the pathologist was Francisco Macasaet, MD. Does anyone know if this lab is reliable or not?

One of the things Iíve learned from this board is DONíT BE SHY! Last week I called and picked up copies of all my tests and results to make shopping for other treatment opinions faster and easier. As a first stop, Iíve made an appointment at an NCI/CCC hospital (James Cancer Hospital at Ohio State Univ) feeling that their treatment team is a lot deeper than my current urologist.

From everything Iíve read, your opinion about monotherapy is correct Ė a three-pronged attack is the way to go.

My question is this: itís been almost a month since my diagnosis. Do I need to make a treatment decision in the next week or will the bicalutamide hold things in check for a few weeks until I can make an informed decision? (I get a new PSA reading in two days.)

Thanks for the time you invest in this board.

PS Ė I ordered Dr. Myersí book from Amazon tonight.

 
Old 07-05-2010, 07:45 PM   #7
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Re: recently diagnosed and scared

Hi again,

I'll add thoughts in green.


Quote:
Originally Posted by jamesrobt View Post
Thanks for your posting, Jim. Your comments on this board have helped me a lot in the past few weeks. My biopsy was read by Bostwick Labs in Richmond, VA Ė the pathologist was Francisco Macasaet, MD. Does anyone know if this lab is reliable or not?

You're welcome. I'm glad to help.

The Bostwick Lab is expert, so you should have a reliable reading.

One of the things Iíve learned from this board is DONíT BE SHY! Last week I called and picked up copies of all my tests and results to make shopping for other treatment opinions faster and easier. As a first stop, Iíve made an appointment at an NCI/CCC hospital (James Cancer Hospital at Ohio State Univ) feeling that their treatment team is a lot deeper than my current urologist.

From everything Iíve read, your opinion about monotherapy is correct Ė a three-pronged attack is the way to go.

My question is this: itís been almost a month since my diagnosis. Do I need to make a treatment decision in the next week or will the bicalutamide hold things in check for a few weeks until I can make an informed decision? (I get a new PSA reading in two days.)

Bicalutamide should help, but it may not be enough to stall things substantially by itself in your circumstances. The dose matters too. For men with metastatic prostate cancer, the experts I pay attention to like a dose of 150 instead of just 50. They sometimes use even higher doses. It's a matter of blocking the fuel docking ports on the cancer cells (the "androgen receptors"), and if there is a lot of cancer, there needs to be enough bicalutamide to do the blocking. I haven't heard of any way to tell with high confidence whether bicalutamide, on its own, would be sufficient to hold the fort for a while.

Thanks for the time you invest in this board.

PS Ė I ordered Dr. Myersí book from Amazon tonight.
Take care,

Jim

 
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