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    Old 03-21-2008, 09:07 AM   #1
    wunderlux
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    Dad just diagnosed with PC- scared, please help!

    Hi
    Wow, I just learned as of yesterday that my father was diagnosed with Prostate Cancer. I have no idea what this means or what the outcome may be. I have been researching like crazy and I was hoping someone here would have some information for me. All I know if that he had a low PSA (3.4) and a high Gleason score - 8. When the did the biopsy it was in only 2 of the 12 samples and the 2 were right next to each other. He is having a bone scan, etc next week as well as talking to a surgeon about this. When he had the ultrasound they did not see anything and I'm not sure but I think he mentioned the gland was only slightly swollen (?)

    I think the urologist gave him the impression that they caught it early and that it seemed to be localized, but i'm sure they won't know until they do surgery, etc. if that is the course of action. Can anyone decifer all of this for me? Any research I do just talks about doom and gloom of this gleason score...i can't find anything encouraging! Any comments or info would be so appreciated!

    thanks!!

     
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    Old 03-21-2008, 09:34 AM   #2
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    Re: Dad just diagnosed with PC- scared, please help!

    It's normal to be concerned and worried, but there's lots to be encouraged by based on what you reported. If the cancer has not spread, and there's no indication it has, then there are quite a few options. Many of us have gone through this with very good results.
    The education process is important though. You and your father can probably learn a lot by reading past posts on this board. A good book, such as a recent one by Patrick Walsh, would be informative.
    We're not doctors on this site- but do have a lot of personal experiences to recount, but again, each person is different. You'll learn of options from doctors that will range from surgery to seeds to radiation (including combinations of the latter two).
    I initially scheduled robotic surgery upon learning of my cancer, after meeting with my urologist. But I then embarked on a serious review of what else was available. I didn't want to take too much time (was a Gleason 7) but wanted to be thorough. What I chose is not right for everyone, but it was right for me-- proton beam radiation. Few side effects and as good a cure rate as far as I can tell as most of the other alternatives.
    Everyone's different. And the doctors don't always talk about what they don't do (or earn money from). I'd just suggest you and your father just learn as much as you can right now, but please don't despair. The book that
    led me to proton beam radiation was by Robert Marckini. There are five centers that do this- the one in operation the longest at Loma Linda, California (have treated over 7,000 prostate cancer patients since 1990). I went to University of Florida Proton Therapy Institute in Jacksonville, Florida and had an exceptionally positive experience.
    New proton treatment facilities are being built, and demand continues to increase, so it's not always easy to get an appointment for a consultation on short notice. If you have interest after reading more, it would be worthwhile to schedule a consultation.
    Next time you post, it would be good to learn what your father's age, health, PSAs are- as these have bearing on what choices might be available.
    Please continue to ask questions.

     
    Old 03-21-2008, 12:36 PM   #3
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    Re: Dad just diagnosed with PC- scared, please help!

    wunderlux;

    I always hate this part. To welcome newbies to this forum. Why? Because when they arrive here, they usually haven't gotten real positive news lately. Anyway, welcome to the PCa forum. Come on in, sit down, have a cup of tea (decaf) and try to relax. I know, that's easier said than done?

    From the limited amount of information you have shared, the only thing that concerns me is the G8 score. To me, the rest of you post sounds pretty positive in an already negative situation. As early as you are in the journey, you can't jump to conclusions. Right now, don't look too far down the road. Take one step at a time. Keep focused on staying positive and being an encouragement and a helper to your Dad. Most importantly, stay closely involved. Go with him when he goes for his bone scan. After that there will be other tests and he'll need comfort and support. Be there!

    For now, tell us more about your father. Let's start with, "How old is he?"

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    Old 03-21-2008, 01:46 PM   #4
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    Re: Dad just diagnosed with PC- scared, please help!

    Thank you both so much for your response....It's hard for me to have too much information on his tests, etc. my dad is a very private person and never likes to disclose too much. Everything I was able to get out of him was with a lot of prodding I know you both mentioned his age, he's 65, very athletic (works out 2 hours a day 7 days a week) and eats very healthy- he's been like this forever. Heck the guy doesn't even have a gray hair on his head! That's why this is such a shock...he takes such good care of himself, the family is having a hard time understanding A. why he got this and B. why the Gleason score is so bad...I would assume a 6 or lower would have been the outcome. I know he's a big internet guy and has probably been googling up a storm since yesterday, researching and what-not, but i just want to be able to help any way I can. I know talking to people who have gone through this or know loved ones who have gone through it are usually the best sources of research and learning you can do. Does any of this help as far as an opinion on him? I think he's assuming, and I know my mom and I feel like he should, just do the surgery....our mentality is get it out of his system now! But of course, we really don't know what's best. ugh...sorry for my rambling, thanks for listening and the empathetic and kind words you both have passed on!!

     
    Old 03-21-2008, 02:34 PM   #5
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    Re: Dad just diagnosed with PC- scared, please help!

    wunderlux;

    I'm a big fan of "I think he's assuming, and I know my mom and I feel like he should, just do the surgery....our mentality is get it out of his system now!"

    I didn't hesitate one moment. But, that's me. That does not mean I did the right thing. All it says is that I did the right thing for me. Your Dad is not nearly at the point of deciding for any specific treatment. All the staging tests need to be back and analyzed before you can select a treatment that both your Dad and his urologist feel comfortable with. For now, concentrate on just jumping through the next "hoop". After that, the next hoop, and then the next. Your urologist will guide you through the process. Don't get the cart before the horse. Meanwhile, there are plenty of great books to read and great internet articles to read that will encourage you and your Dad. If he's the geek that you say he is, he'll soon have a knowledge base to work with and so will you. Remember, all we on this forum can add is our personal experience with the treatment we chose. That's it! The rest are opinions. We are not professionals by any means. We can only tell you what to expect next from our first hand knowledge. We can provide tips and tricks to try to make the journey easier. You can count on us to be beside you while you take this journey. Above all, try to relax.
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    Old 03-21-2008, 05:02 PM   #6
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    Re: Dad just diagnosed with PC- scared, please help!

    Quote:
    Originally Posted by wunderlux View Post
    ... his age, he's 65, very athletic (works out 2 hours a day 7 days a week) and eats very healthy- he's been like this forever. Heck the guy doesn't even have a gray hair on his head! That's why this is such a shock...he takes such good care of himself, the family is having a hard time understanding A. why he got this and B. why the Gleason score is so bad... I would assume a 6 or lower would have been the outcome. I know he's a big internet guy and has probably been googling up a storm since yesterday, researching and what-not, but i just want to be able to help any way I can. I know talking to people who have gone through this or know loved ones who have gone through it are usually the best sources of research and learning you can do. Does any of this help as far as an opinion on him? I think he's assuming, and I know my mom and I feel like he should, just do the surgery....our mentality is get it out of his system now! ...
    I can identify a lot with your dad. We are nearly the same age, and we both got a discouraging jolt at the start. Mine was a PSA of 113.6 in 1999 when I was 56, with a biopsy to math, but at least my Gleason was slightly lower at 3+4=7. Like your dad, I was then athletic and have remained so. There is evidence that that helps us a lot in combating prostate cancer, and I think it is one of the reasons my cancer had not detectably spread beyond the neighborhood of the prostate.

    We've had a couple of participants lately with Gleason 8 cases, and I hope they will chime in. If you use the search feature in the upper right of the board and search the archives of past messages for Gleason 8, you will probably find other exchanges. I too have learned important facts, approaches and viewpoints from fellow survivors, but you and your dad should also make use of some valuable resources from medical professionals. The book by Dr. Walsh was already mentioned. Here are two key resources written by medical oncologists: "A Primer on Prostate Cancer - the Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, and "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles Myers, MD. I consider both essential for those of us with challenging cases. Many of the key points in the Primer are also available from the Prostate Cancer Research Institute, which Dr. Strum co-founded. It looks like your dad is into empowerment, and I'm sure he will get a lot out of these books. Here's another key tool that will take you to the raw information that doctors use: [url]www.pubmed.gov[/url]. It's the US Government website for medical information, and you can do all kinds of searches, such as " Gleason 8 AND prostate cancer ".

    One fact about Gleason 8 and higher cancers is that they tend to produce less PSA per unit of cancer than lower Gleason cancers. That means that for many (but not all) Gleason 8 cancers, the PSA is not as good an indicator of the state of the disease as it is for the rest of us. Fortunately, there are some other markers that can help, and getting a baseline for each at the start is ideal. These are all described in the Primer, but they are known as PAP (Prostatic Acid Phosphatase), CEA (Carinoembryonic Antigen), CGA (Chromogranin Alpha), and NSE (Neuron Specific Enolase). Many doctors (including my own) who do have a practice that involves many advanced prostate cancer patients seem to be unaware of these markers and their usefulness. Chances are strong that a urologist will not be aware of their role, but a medical oncologist might. In my opinion (as a layman survivor), a second opinion with a medical oncologist would be a good idea.

    I just updated the thread on "Gleason 8 (and higher) cases ...". To me the first post has very encouraging news for Gleason 8 patients, especially if their cancer appears to be confined. The post I added today also has news about insightful findings from recently published favorable clinical trial results about adding radiation to surgery for high risk patients (actually with confirming results from a similar trial also). On the other hand, I think I've read that radiation alone tends not to work as well against high Gleason disease. Cryo surgery is an option that works equally well no matter what the Gleason is.

    One key point is to make sure a pathologist who is expert in prostate cancer has done the Gleason grading. Most of us (including me) have our biopsy graded by a general pathologist who does not specialize in prostate cancer, and they make a lot of misgrades. Typically, they undergrade more than they overgrade. The Gleason is so critical in decision making that it is important to get it right. My own Gleason went from a 3+4=7, graded by a general pathologist, to a 4+3=7 when graded by an expert. That's a significant difference. The Primer and other sources provide leads to expert pathologists.

    About getting it out of his system now: most of us, even low-risk patients, actually have prostate cancer cells in our bones and blood at the time of diagnosis. Research has proven that. However, those stray cells usually do not thrive. On the other hand, I've heard several expert doctors theorize that they are more likely to thrive if the Gleason is high. That may be one reason why local therapy, like surgery, has better results if backed up by radiation for high risk cases.

    This is already long, so I won't go into what we know about causes of prostate cancer. We don't have a conclusive, comprehensive picture yet, but we know quite a bit.

    Good luck to you and your dad in learning about this disease and coping with it.

    Take care,

    Jim

     
    Old 03-21-2008, 05:37 PM   #7
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    Re: Dad just diagnosed with PC- scared, please help!

    Quote:
    Originally Posted by wunderlux View Post
    Thank you both so much for your response....It's hard for me to have too much information on his tests, etc. my dad is a very private person and never likes to disclose too much. Everything I was able to get out of him was with a lot of prodding I know you both mentioned his age, he's 65, very athletic (works out 2 hours a day 7 days a week) and eats very healthy- he's been like this forever. Heck the guy doesn't even have a gray hair on his head! That's why this is such a shock...he takes such good care of himself, the family is having a hard time understanding A. why he got this and B. why the Gleason score is so bad...I would assume a 6 or lower would have been the outcome. I know he's a big internet guy and has probably been googling up a storm since yesterday, researching and what-not, but i just want to be able to help any way I can. I know talking to people who have gone through this or know loved ones who have gone through it are usually the best sources of research and learning you can do. Does any of this help as far as an opinion on him? I think he's assuming, and I know my mom and I feel like he should, just do the surgery....our mentality is get it out of his system now! But of course, we really don't know what's best. ugh...sorry for my rambling, thanks for listening and the empathetic and kind words you both have passed on!!
    I know I did it already, but I'll put another plug in for the proton option. I'm 64 and Gleason 7. Again, I was going to do the surgery-- but changed after speaking with maybe 25 people that had this treatment, including some that were undergoing it at the time. It's something that the urologists generally don't even mention, even though it may end up being the treatment of choice somewhere down the road. Getting the Marckini book "How to Beat Prostate Cancer" will guide you through the basics. Wish this board weren't totally private, as otherwise I'd like to speak with your Dad. While I was undergoing my treatment (I finished this past November) I encountered a few that were there after failed surgery- to treat the prostate bed. As you can tell, I'm a believer in what I did, but again, I'll repeat that no one can make a choice for another. I'm just advocating that one investigates the options. (Surgery works for many, but not all results are as people expect going in.)

     
    Old 03-21-2008, 05:40 PM   #8
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    Re: Dad just diagnosed with PC- scared, please help!

    The one thing you can do for dad is be strong for him. I now how it feels when someone in the family gets sick. I feel like there is nothing I can do about it. I see that you got all the advice you need about the research but my best advice for you is to stay strong for your dad and to be there for him. Right now he needs you the most. Trust me I went throught the same with my grandfather.

    Last edited by winnie101; 03-21-2008 at 05:47 PM.

     
    Old 03-23-2008, 06:47 AM   #9
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    Re: Dad just diagnosed with PC- scared, please help!

    Wonderlux,

    I am in a similar situation as you. My father was recently diagnosed (well it's been about 5 months, but that is pretty recent). I've only posted a couple of times, but the replies I have received have been very positive and helpful. My dad is a little older than yours (69) and not in nearly as good shape as yours in terms of the working out that your dad does (which is fabulous!!). He doesn't drink or smoke or have high blood pressure, but he has a bad knee which keeps him from doing too much (he does walk the dog fairly regularly though). Average weight for his height, which is good. But he does have something in common with your father. He is very private.

    His PC diagnosis was a big shock to our family as well, as his last PSA reading (done sometime in Oct was a very low 2.2 or thereabouts). His Gleason score was a 6, so lower than your DAd's. HIs bone scane was negative, thank goodness. He developed an infection after the biopsy which lingered, and he was (and sometimes still is) getting like spasms of the bladder and burning when he urinates. He had decided on the seed treatment as his course of action, but, I'm not sure he still wants to go that route. HIs next appt with his urologist is March 25, so hopefully a game plan can be put into action. I just wanted to welcome you to the boards, like the other posters have said, get as educated as you can, and talk to the urologist, and don't be afraid to ask a lot of questions. Good luck.

     
    Old 03-23-2008, 06:42 PM   #10
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    Re: Dad just diagnosed with PC- scared, please help!

    Thank everyone so much for your information, encouragement and your kind words. It's so helpful to be able to reach to people who have gone through this, are going through this or have family members that are going through....makes you feel a lot less alone in this journey. I'm still using these boards and the internet to gather as much information as I can, and I must say my dad has been quite happy and impressed that I have become so knowledgable about his newly diagnosed condition. AS I talked to him more this weekend, I learned that his results were labeled both a 7 and an 8. One biopsy (out of the 12) was 3+4=7, 40% of the sample and the other (which was right next to this one) was 4+4=8, 50% of the sample. Not sure if that helps his odds on the scale, but I do hope so. We keep clinging to the hope that this was caught early enough and that it can be taken care of without any problems...but that 8 score keeps hanging over him like a dark cloud. Hopefully we'll have more definitive news when he talks to the surgeon on Tuesday.

    Again, thank you everyone for the posts, I have been soaking it up like a sponge. I'm going to try and convince my dad to go on this post and start posting himself, just to help get information and a sense of comradeship communicating with people that are going through the same thing. This truly is one of the nicest forums I have been on!

     
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