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Posted 9/21/2012 5:21 PM (GMT 0)
Hi all, I’m the newest member of the club, having received positive results from my biopsy last week. After a few days of getting used to this, I’m starting to look around for more information, discovered this site and it instantly became clear that this is a fantastic community with incredible amounts of mutual support. So I’m hopeful to get some initial guidance and thoughts about my next steps. Here’s where I am:

I’m 51 years old with a Gleason score of 8, with some 7s (4-3), but I don’t know other details. I had a previous biopsy in 2007 that was negative. PSA was in the 4-5 range following that, but in November of 2011 began a steady march up to 9.6 by this May.

My urologist had me do a bone and CT scan, which I did earlier this week. Found out yesterday the bone scan was negative (Yay!), but haven’t heard back on the CT scan. I have a follow-up scheduled with my urologist for next Thursday to talk more about treatment options, although he has already voiced his recommendation for Da Vinci surgery (which he specializes in).

Compared to others, I seem to know relatively little about my results…what should I be asking my doctor at this point?

I like and trust my urologist, but it seems like getting a second opinion still makes loads of sense. But I have no idea how to do that…for example, should I start to schedule now or wait until I have a more in depth conversation with my urologist next week? Also, not sure if I should have a certain perspective in mind as I do this. I live in a suburb of Los Angeles, so I’m close to lots of resources.

I could go on, but this seems like plenty for an initial post. Thanks all!

Michael
Posted 9/21/2012 5:45 PM (GMT 0)
Welcome to HW. Hope we can be of help.

Living in the LA area, you have access not only to great hospitals, but one of the best experts in prostate cancer: Dr. Mark Scholz. He's a medical oncologist so he can't perform surgery or administer radiation. But he can help you properly stage your disease and pick the best approach for you without the inherent bias of a surgeon or radiation oncologist. He wrote the book: Invasion of the Prostate Snatchers, which provides good general information, and is especially aimed at patients with non-aggressive PCa. Neither you nor I fit into that category, but it can give you an idea of his approach. So too does a website with which he is closely associated: Prostate Cancer Research Institute.

I'll state right off that he is my consulting doctor, and several others on the board see him. Because he specializes in PCa, he has handled thousands of cases of all kinds, and is on top of the latest techniques, tests, nutrition, and so on. So you might want to give him a jingle.

Hope you find the treatment that works best for you.

Nellie
Posted 9/21/2012 5:54 PM (GMT 0)
I second Reviere's advice. I took me 5 doctors before I found Dr Scholz and there was a night and day difference in knowledge about PC. It is well worth getting a 2nd opinion from him. The best part is that he has had years of experience with tens of thousands of PC patients and knows the best doctors that will provide the treatment you choose; this alone is worth the price of a consult and you will get an accurrate staging that will eliminate treatments that wouldn't work in your individual case.
JohnT
Posted 9/21/2012 7:31 PM (GMT 0)
Sorry to hear of your diagnosis.
when I wanted a 2nd opinion, I had to acquire my medical records, pathology report and the pathology slides.
It was a bit of a hassle.
You should have a copy of your pathology report in any case.
You are fairly young so radiation might not be a good option.
Older patients are often offered surgery or radiation.
Good luck to you........Robert
Posted 9/22/2012 12:41 AM (GMT 0)
I would also highly encourage you to seek a consult with Dr. Scholz......he is considered one of the true experts in Pca, with no bias towards any treatment...in Marina Del Rey. I use him as well as UCSF for my treatments.
Posted 9/22/2012 1:01 AM (GMT 0)
Welcome, Michael

I agree with the others, since you have access, see Dr. Scholz. And with you being a Gleason 8, a 2nd opinion is really needed, you only get one shot at making the right primary treatment choice for yourself, and you need the best opinion, the best doctor, and the best treatment for your circumstances.

Good luck to you

david in sc
Posted 9/22/2012 3:23 PM (GMT 0)
Michael,

I can't add but one thing to the good advice you have already received above. Consider yourself fortunate that you live in the LA area and have a resource like Scholz so close.

Geography is often an issue for many who are on the same road as you.
Best wishes,

Joe
Posted 9/22/2012 3:30 PM (GMT 0)
I just want to thank folks for the thoughtful advice and your quick replies. I was presuming I would have access to good resources here in LA, but in the case of Dr. Scholz he's even in my part of town. I'm looking forward to connecting with him. (And I'm looking forward to getting the results of the CT scan back...was sure hoping that was going to happen before the weekend.)

Michael
Posted 9/22/2012 3:36 PM (GMT 0)
Welcome to HW. You've gotten a good start with the suggestions so far. Good luck in your research and whatever course you choose.
Posted 9/23/2012 11:59 PM (GMT 0)
Having had the weekend to sift through this advice and read more posts, here's what I'm thinking for next steps:

1) schedule consultation with Dr. Scholz (this seems like a no brainer)

2) ask for copy of the biopsy report. Other than the doctor telling me I was a Gleason 8, with some 7s, I have no idea about cores, quadrants, margins and some of the other things mentioned here. I was going to ask my doctor for that info next Thursday when we meet, but seems like I should just get it now and start to learn more about my case.

3) find a radiologist to consult with. That way, I'd have the opinion of a surgeon, a radiologist and an oncologist, which feels like a broad spectrum to me.

Does that sound right for immediate next steps?

Michael
Posted 9/24/2012 12:08 AM (GMT 0)
Michael,

It seems reasonable to me. Here is Dr. Scholz web site, http://www.prostateoncology.com. It can give you some insight into their overall philosophy. In my journey, I have consulted with Dr. Lam, Dr. Scholz's partner. Both are very good. I think you are doing the right thing by talking to them prior to making a decision.

SC

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