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Old 10-16-2010, 03:57 PM   #1
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One year after RP- 9 months of Lupron- What I have learned

I am 46- I had a RP done a year ago- and after this time the PSA stayed high. I do have a positive bone scan- (minor but its there). I started Lupron in January, Zometa in February. I bought the book Beating Prostate Cancer with Hormonal Therapy and Diet- I have had my last bacon sandwich- and I drink gallons of V-8.

My PSA was at 10 after surgery- it is <.1 now. It has been this way for 5 months. My doc is giving me a vacation from the Lupron. Thanks to this board I have received the education and direction for my own care. Since the level was less than .1, I have let my guard down. While I follow a strict diet, I am not exercising, and not giving it the attention I should. Wow what a mistake.

It is possible that you can forget you have prostate cancer. Somehow you remember when you show up at the oncologist office for a Zometa treatment. I guess I was having too much fun this summer. The <.1 is good, sure, but I would like to know if its .09 or .02. I have always thought I am getting B care from my doctor, but I need A care, and I have the ability to change it. I looked into going to a support group- but they are all at retirement homes here. At 46- that is kind of bad on the morale.

My thoughts- Reach out to my insurance company- they have a Health Coach available. Also I am considering getting coaching by the PCREF doc- Israel Barken- I would like to know if anyone had experiences with him. While I seem to be at a good level now- I am thinking now is the time to act and change course. I welcome thoughts.

And to Jim- you do such a service here. I really (and others) owe you thanks. I have not visited the board in 3 months- I read one of your postings, and I had to call my wife. I really didn't want to wait until she got home from horseback riding.

Thanks to all.

Tim

 
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Old 10-18-2010, 08:35 AM   #2
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Re: One year after RP- 9 months of Lupron- What I have learned

Hi, Tim
Congratulations on the low PSA. Surely you are doing well.
Regarding the low levels of the tests, you may try to request for the ultrasensitive PSA test that gives you two decimal places (0.XX), which is nowadays the common practice in the labs. In such a case, your “<0.1” may show to be actually a value of 0.02 that has been rounded up.
Recently, there is still a newer third generation ultrasensitive tests which give more accuracy with three decimal places (0.XXX ng/ml). In that case, a <0.1 could as well be still lower at the 0.009 ng/ml, but you may not need to follow your prostate health at those levels.

Wishing you a long summer vacation,
Baptista

 
Old 10-18-2010, 05:18 PM   #3
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Re: One year after RP- 9 months of Lupron- What I have learned

I thank you for that. I have been seeing the references to more decimal points- but I didnt know what to ask for.

I reread my post, and I needed to make something a little more clear. My question- has any one had experience with coaching from the Doctor from the Prostate Cancer Research and Education Foundation. If anyone googles it they will find it. I have listened to the podcasts there, and he seems to be at the forefront of this. They suggest this as a good alternative, and my impression is that this will be time well spent.

 
Old 10-19-2010, 01:44 PM   #4
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Re: One year after RP- 9 months of Lupron- What I have learned

Hi Tim,

I'll start with thanks for your kind comment at the end of your first post. I'm delighted to hear that the information was encouraging.

Baptista has already provided good words about the level to get in ultrasensitive testing, and I agree that getting that third digit (0.00x) is probably not helpful at this time. On the other hand, studies in the future may give meaning to those super low PSAs.

On the grade of care you are getting, I believe strongly in finding out more information, especially when your case has a challenging element or two (or more). Changing doctors is one way to do this when the doc is just practicing uninspired, conventional medicine, but another option is to educate the doc, if open-minded and willing.

In your latest post you wrote in part:


Quote:
...I reread my post, and I needed to make something a little more clear. My question- has any one had experience with coaching from the Doctor from the Prostate Cancer Research and Education Foundation. If anyone googles it they will find it. I have listened to the podcasts there, and he seems to be at the forefront of this. They suggest this as a good alternative, and my impression is that this will be time well spent.
Here's what I know about Dr. Barken and my impressions. I've actually met him twice, once in 2000 was memorable. It was at the "National Conference on Prostate Cancer 2000" at Long Beach, CA, and he and his wife were exhibitors. He was dressed in a wizzard's peaked cap and flowing, black, ground length gown, standing before a crystal ball. Needless to say, he drew attention, and, wizzard fashion (shades of Johnny Carson) he would answer questions from attendees about their cases. He answered one for me, and I later got the same answer from the moderator of the conference, Dr. Stephen Strum, MD. (At that time both thought I should probably add chemo to the triple blockade I was then on - having added the third element recently - for my very high risk case. Turned out my next PSA successes showed I did not need to add the chemo, but it was good advice nonetheless.)

I later saw him, again as an exhibitor, at the National Conference on Prostate Cancer 2005, held in Washington, DC. I've also listened to several of his podcasts, including one a few years ago with Dr. Mark Scholz, medical co-author of the new book "Invasion of the Prostate Snatchers," and one of the leading experts on hormonal therapy for prostate cancer.

My impression is that he is quite knowledgeable and open to new thinking, while not being taken in by poorly supported flashy new approaches. (I believe he was one of the pioneers in cryo surgery.) I believe he knows a lot about hormonal therapy. He seems to be highly patient oriented, truly caring about our well being. He is one of those doctors dedicated to empowering patients so that we will be able to make better decisions and be able to cope better with the disease, and he and his wife have been generous with their time, especially in the San Diego area. I feel he is one of those doctors with a special gift for communicating with patients. He is optimistic, but with his optimism well grounded in research.

With that background, you might wonder why he has not been a presenter at the National Conferences, at least those from 2000 onward. I know that he wrote one tactless, unthoughtful, and ill-informed public statement about Dr. Strum, a key leader behind the conference series, and that may reflect a relationship issue there. However, the short statement could easily have been the one-off kind of thing that almost all of us have regretted uttering on occasion. As far as I've seen, other statements regarding Dr. Strum and other leaders and issues in prostate cancer have been fine.

My impression is that Dr. Barken would be a good coach to someone in your circumstances. If you work with him, I would be interested in learning what you thought.

Take care,

Jim

 
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