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Old 03-28-2011, 01:34 PM   #1
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Dad just diagnosed last week Gleason 8: Where to Begin?

Been up every night doing research since the diagnosis 3 days ago, and I've just found this board.

My father was diagnosed 3 days ago with Gleason 8 (4+4). He was diagnosed as a result of a routine physical exam to have his PSA levels checked. I was at the visit to the urologist to receive the news, although at that time I didn't fully understand everything I was hearing.

History:

He is 72 years old. (Both of dad's parents lived to be early 90's and vibrant.)
Active, meds for hypertension & cholesterol, never had any other surgery, or any other medical history. Never smoked or drank.
Diagnosed with Gleason 8, 4+4
Current PSA is 4.5. I believe it was 4.0 three months ago, but not sure.
Urologist said the stage was 1C. He said it was "the beginning stages."
Also mentioned something about 12 cores or samples -- 4 were positive, all on the right side.
Bone and lymph scans, xrays, MRI's = all negative. Belief is that it's local to the prostate, but of course can never be sure.


The doctor was very subtle in explaining that this form of PC is aggressive, don't think my parents truly picked up on that, or that the doctor really emphasized it strongly enough. He then made referrals to specialists for us to investigate two treatment options: Radiation with hormone shots, or laproscopic surgery to be done in Orlando (2 hours away). He spoke of 2 other treatments, seeds and cryo treatment, both of which he discounted as not appropriate for dad's situation. He gave no recommendation one way or another on the two approaches, told them to do their research, "but not to get too many opinions or they would just confuse themselves." He told my parents that they should make a decision no later than about 2 months, and he would see my dad again after he completed his chosen treatments. After my readings in the last 3 days, I am feeling a sense of urgency, and questioning why the doctor would have told them to take so much time to decide about a treatment choice, with such an aggressive form of cancer.

I am reading studies that show the best results for Gleason 8 are with radiation/hormones over surgery, and then there are studies that show better results for surgery over radiation. Other studies recommend all three approaches to be used. Most studies are 3 years or older. I can't find much that is really current.

Some posts here on this board recommend a 2nd opinion after the initial diagnosis. This always sounds like a good idea -- but where to go?

This is all brand new to us. We've been referred to the Lynn Cancer Center at Boca Hospital and have our first appointment there in 2 days with a radiologist.

I have so many questions, but more importantly, I don't even know what questions we should be asking.

Should my dad be seeing an oncologist instead of his urologist? If so, are there any recommendations for specialists in our area? (Palm Beach County, FL)

I am reading about the Moffitt Center in Tampa -- we are willing to make the 4-hour ride there. Should we do so?

What about Hopkins, Mayo? Should we be seeking second opinions, advice, or treatment from any of these places? Are these places even local to us?

My parents are married 51 years and still act like lovebirds. My dad is my best friend. My mother is in denial and tears, and is too paralyzed with shock to make any decisions. (Although the doctor did not drive it home to them, the impact of what I've been reading in the last few days is now sinking in for all of us.) I used to work in healthcare years ago, so my parents value my opinions and advice. But I don't know where to begin.

Can anyone here please point me in the right direction to specialists in our area? Or to treatments we should be examining, and questions we should be asking?

Thank you so much,
Loving Daughter to a Great Dad

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Old 03-28-2011, 08:39 PM   #2
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

I have to correct one error. I believe his PSA is currently 5.0.

Anxiously awaiting replies. We just don't know where to turn to, or how to begin this process.

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Old 03-29-2011, 09:46 AM   #3
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Hello WillToWin,

I wanted to respond quickly so at least you know folks are paying attention. And let me say first of all that you shouldn't panic about your father's condition. Since it appears to not have metastasized yet, there are plenty of options to deal with the cancer. I am sure that he will be with you for many, many years to come.

While your father has aggressive cancer, it is not so bad that you don't have time read some books and get better acquainted with the options out there. I don't have a list of books right at hand, but IADT3Since2000 has listed them in many of his posts. Reading any of his posts is like opening a gold mine, so use the search functionality to find what you need.

I know how traumatizing this news can be, and sympathize with your family. My wife and I went through much the same emotional response at first when we learned of my Gleason 9 condition. But as we became more informed and came to our decisions, things leveled out.

By all means, get a second opinion, whatever the recommendation. You could also get an expert pathologist to review the biopsy results to make sure of a correct reading.

I'm confident that your father will soon get good and effective treatment.

Best wishes,
Tom

 
Old 03-29-2011, 05:00 PM   #4
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Hi willtowin, and let me extend my own welcome to the Board (and thanks to Tom for kind words )! I'll put some thoughts in green.

First, though, I urge you to take up Tom's suggestion to search the board a bit, not just for my posts but for posts from others about cases with Gleason scores of 8 to 10. That would have been rightly and truly scary a decade and a half ago, but the situation is far, far better today - no cake walk, but something most of us can deal with and still enjoy years of good life. My own verified Gleason was 4+3=7, so I'm not in the 8 to 10 club, but I had other characteristics of a very high risk case. I'm doing very well, now in my 12th year as a survivor at age 67.


Quote:
Originally Posted by willtowin View Post
Been up every night doing research since the diagnosis 3 days ago, and I've just found this board.
Here are four books that are excellent for newly diagnosed patients and their supporters.

"Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers, MD - Hormonal therapy is quite likely to be part of your dad's treatment, and lifestyle tactics that Dr. Myers describes (diet, nutrition, supplements, exercise, stress reduction, plus low-key medications, especially a statin drug) are quite important and should also be a part of your dad's program. Also, Dr. Myers, who went the extra mile for us by also having his own challenging case of prostate cancer, delivers a huge dose of realistic optimism - just what you and your folks need right now! It's also easy to read and understand. (I'm aware of one change: Dr. Myers now recommends curcumin in a capsule form that has an agent to promote high absorption.

"Invasion of the Prostate Snatchers," by Ralph Blum and Dr. Mark Scholz, MD. Ralph Blum does a great job of providing insights from a patient's viewpoint, and Dr. Scholz is, along with Dr. Myers, one of the experts in hormonal therapy. His book is especially strong on measures to avoid or minimize the side effects of that therapy, and he addresses some of the considerations used to decide how aggressive hormonal therapy needs to be. The book, which is generally outstanding, is also strong on methods to assess a particular case. This book too is easy to read, and often entertaining.

"A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum and Donna Pogliano, activist and well-informed wife of a survivor. To many of us, this is the "bible" for prostate cancer. It is expert and superbly illustrated with many graphics and photos. Like the other two medical authors mentioned above, Dr. Strum is one of the leading experts in hormonal blockade, and the book has a long and highly informative section on hormonal therapy. It too is excellent on staging the patient's cancer, and fine on describing therapy choices. This book is not as easy to read as the other too, but it well repays the extra effort.

A fourth choice is excellent for patients who need to know more about radiation: "Surviving Prostate Cancer - The New Gold Standard Treatment that Can Save Your Life and Lifestyle," by Dr. Michael Dattoli (practicing in Sarasota), Jennifer Cash (an oncologic nurse in his practice), and Don Kaltenbach, a prominent prostate cancer survivor. This book too is a treasure trove of information, but its special strength is radiation. Dr. Dattoli is one of the leading radiation experts and researchers.

You may also find much useful information in the publications of PCRI (The Prostate Cancer Research Institute), a non-profit organization.

I realize I'm loading you up with a lot of material, but prostate cancer is a disease where patient empowerment pays off, much more so than with many other diseases. I recommend you get all four of the books. They are all modular, so you can skip around to what you need to know. Also, even though they cover much common ground, the perspectives are different enough so that you pick up valuable points from each.




Quote:
My father was diagnosed 3 days ago with Gleason 8 (4+4). He was diagnosed as a result of a routine physical exam to have his PSA levels checked. I was at the visit to the urologist to receive the news, although at that time I didn't fully understand everything I was hearing.
I'll strongly endorse Tom's recommendation to get a verification of the Gleason by an expert, unless an expert did the initial grading. The Primer lists a number of expert pathology reviewers.

Quote:
History:

He is 72 years old. (Both of dad's parents lived to be early 90's and vibrant.)
Sixty nine or 70 has traditionally been a cut off for surgery, as elderly patients have had more trouble with side effects. However, this is changing as robotic surgery, IF done by an expert, makes surgery more tolerable. That said, I'm thinking that radiation plus hormonal therapy, or even just hormonal therapy for a while, would be more appropriate.

Quote:
Active, meds for hypertension & cholesterol,
Ah, your dad is fortunate that he has been on a cholesterol medication if it is a statin, as is likely. While it is still debatable whether statins reduce the risk of getting prostate cancer, it is now established that statin use substantially cuts the risk of dying from prostate cancer, especially with longer use. There is a benefit in risk just from being on a statin, but being on longer than three years confers an added benefit; now it looks like five or more years of use is even more beneficial. I recently started two threads on statin use and prostate cancer. Explaining the benefits of a statin drug for prostate cancer to your folks may help give them some greater hope.

Quote:
never had any other surgery, or any other medical history. Never smoked or drank.
Fairly recently a modest link of prostate cancer risk and smoking was noted. I would not suggest starting alcohol now, but a couple of glasses of wine actually seems beneficial for prostate cancer patients. Wine is part of the Mediterranean diet that is excellent for prostate cancer patients.

Quote:
Diagnosed with Gleason 8, 4+4
Current PSA is 4.5. I believe it was 4.0 three months ago, but not sure.
It would be wise to get copies of the biopsy report and both PSA reports, as well as any previous PSA reports from recent years. The difference between 4.5 and 5.0 over a three month span in your dad's case could be significant in adding a risk factor or not (a rise in PSA over 2.0 in the year prior to diagnosis, with a rise of 4 to 5 in three months projecting to just about 2.0 for a year). This added factor is not a show-stopper, but it should be added to the picture. Getting another PSA would also be helpful if it is not too close to the biopsy.

Quote:
Urologist said the stage was 1C. He said it was "the beginning stages."
In your dad's case, that means that the cancer was detected due to a biopsy triggered by a concern for the PSA, that the cancer was only in one small part of the prostate on one side, and that from the digital rectal exam the urologist cannot feel anything abnormal and that the size is not a concern.

Quote:
Also mentioned something about 12 cores or samples -- 4 were positive, all on the right side. Bone and lymph scans, xrays, MRI's = all negative. Belief is that it's local to the prostate, but of course can never be sure.
Lives in Palm Beach County, Florida.
There are two additional kinds of imaging that can be very helpful, with experts in Sarasota and Orlando. Dr. Dattoli, I believe, does color Doppler ultrasound prostate imaging, which reveals new blood vessel growth to support tumors, going a long way toward revealing the location, size, shape and number of tumors, all important clues. Dr. Bravo at Sand Lake Imaging in Orlando is now doing USPIO (Ultrasmall Superparamagnetic Iron Oxide high resolution MRI) that can spot tumors as small as 2 to 3 mm with a high degree of reliability. This is a real breakthrough, previously only available in the Netherlands. The capability is only about a year old at Sand Lake Imaging, and they have rolled it out slowly, studying results for about a year with referals from only two doctors. It is about to become more widely available.

Quote:
The doctor was very subtle in explaining that this form of PC is aggressive, don't think my parents truly picked up on that, or that the doctor really emphasized it strongly enough. He then made referrals to specialists for us to investigate two treatment options: Radiation with hormone shots, or laproscopic surgery to be done in Orlando (2 hours away).
I'm impressed that he referred to both urology and to radiation.

Quote:
He spoke of 2 other treatments, seeds and cryo treatment, both of which he discounted as not appropriate for dad's situation.
As a now savvy patient, but with no enrolled medical education, I would be skeptical of cryo too for your dad's case. However, one of the worl'ds experts and leading cryo researchers, Dr. Gary Onik, practices in Celebration, Florida.

As for seeds, it's hard for surgeons to keep up with all the research, and I suspect he has not kept up with outstanding results for seed therapy at centers of excellence. Often seeds are combined with other external beam radiation and hormonal therapy. The Dattoli book is excellent on all of this.


Quote:
He gave no recommendation one way or another on the two approaches, told them to do their research, "but not to get too many opinions or they would just confuse themselves." He told my parents that they should make a decision no later than about 2 months, and he would see my dad again after he completed his chosen treatments. After my readings in the last 3 days, I am feeling a sense of urgency, and questioning why the doctor would have told them to take so much time to decide about a treatment choice, with such an aggressive form of cancer.
I too would want to speed that up, but it's very important to take careful aim. Your folks may be subject to overload, but here is where you can play a great helpful role.

Quote:
I am reading studies that show the best results for Gleason 8 are with radiation/hormones over surgery, and then there are studies that show better results for surgery over radiation. Other studies recommend all three approaches to be used. Most studies are 3 years or older. I can't find much that is really current.
I'm thinking your dad will end up with radiation plus hormonal blockade for a while. I'm convinced that papers by surgeons that compare surgery favorably to radiation usually use outdated, obsolete radiation dose results for their comparisons. When modern radiation at excellent facilities is in the picture, surgery usually comes off second best, as I see it. In part I'm basing this on a group of experts that is known as the Prostate Cancer Results Study Group. You can find all the studies that have been done by going to www.pubmed.gov, a site we can use on the board because it is Government sponsored (and a Godsend! ); use the Limits feature to activate clinical trials, humans, males, and studies with abstracts.

Quote:
Some posts here on this board recommend a 2nd opinion after the initial diagnosis. This always sounds like a good idea -- but where to go?
The Primer can help; so can local support groups. Florida has a very active state prostate cancer coalition.

Quote:
This is all brand new to us. We've been referred to the Lynn Cancer Center at Boca Hospital and have our first appointment there in 2 days with a radiologist.

I have so many questions, but more importantly, I don't even know what questions we should be asking.
If you can get Dr. Dattoli's book, that has great questions regarding radiology. Of course, Dr. Dattoli's practice will be in competition with the Lynn Cancer Center radiation folks.

Quote:
Should my dad be seeing an oncologist instead of his urologist? If so, are there any recommendations for specialists in our area? (Palm Beach County, FL)
The radiation doctor will probably be a radiation oncologist. However, "medical oncology" is a different specialty, where drugs are the main mode of treatment, but with referral to surgery or radiation as needed. I believe that medical oncologists are the most objective doctors treating prostate cancer. Ideally, in my opinion, a patient would see an expert medical oncologist who specializes in prostate cancer. However, there are not very many of them, and their fees are often high - not unreasonable, but high. After all, they offer high talent and deep experience, and they often spend substantial time keeping up with the field, which reduces their time to see more patients; that costs. Finding medical oncologists with a substantial number of prostate cancer patients in their practices is a more achievable alternative for many of us.

Quote:
I am reading about the Moffitt Center in Tampa -- we are willing to make the 4-hour ride there. Should we do so?
Moffitt seems to have a good reputation, but I do not know much about it.

Quote:
What about Hopkins,
Hopkins is especially known for surgery, though it is also known for general excellence and research. However, I personally am not impressed with their overall institutional approach to hormonal therapy; they may have some individual clinicians who are excellent however. I am aware that some of their premier prostate cancer researchers disagree sharply with their justly famed and heroic surgeon Patrick Walsh over some hormonal therapy issues, a therapy which I am convinced he does not understand thoroughly, especially the role of finasteride and Avodart. You have closer locations that are at least as expert in radiation.

Quote:
Mayo?
Mayo at Jacksonville might be an option, but I'm not that familiar with it. I hope you get some responses from Floridians.

Quote:
Should we be seeking second opinions, advice, or treatment from any of these places? Are these places even local to us?

My parents are married 51 years and still act like lovebirds. My dad is my best friend. My mother is in denial and tears, and is too paralyzed with shock to make any decisions. (Although the doctor did not drive it home to them, the impact of what I've been reading in the last few days is now sinking in for all of us.)
It's good to learn of such a loving and wonderful family! That can take the sting out of so many of life's pitfalls, but there is something else you all need to understand: the nature of prostate cancer survival, and how it compares to other cancers.

What so many newly diagnosed patients and their families do not realize is that prostate cancer is almost always quite a slow growing disease. A Gleason 8 ups the ante, but does not dash all hopes. It is important to realize that 95% of high-risk patients, like your dad, are alive at the ten year point, many, like me, still going strong. (Nearly 100% of low- and intermediate-risk patients are alive at that point!) This is in sharp contrast to the survival pattern for most other major cancers, with prostate cancer doing distinctly the best. Moreover, survival trends have been improving as treatments, case management technology, and supportive health technology have improved greatly. I've given specific evidence on the board a number of times, and I'd be glad to give you specific citations of evidence if you would like.


Quote:
I used to work in healthcare years ago, so my parents value my opinions and advice. But I don't know where to begin.
That experience should stand you and your family in good stead now.

Quote:
Can anyone here please point me in the right direction to specialists in our area? Or to treatments we should be examining, and questions we should be asking?

Thank you so much,
Loving Daughter to a Great Dad
You are already on the right road! Keep it up!

Take care,

Jim

 
Old 03-29-2011, 05:54 PM   #5
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

I'm sorry to hear about the diagnosis, but congratulations on his having organ-confined disease. That's not so common with a Gleason of 8, so he is fortunate at least in that respect. Making a decision within two months sounds prudent to my non-medical ears. Perhaps he can start on statins immediately, which seems to be particularly useful with aggressive disease. (IADTSince2000 wrote a very good thread about it).

As far as treatment options go, a good starting place, if you haven't already done it, is the Prostate Cancer Treatment Decision Tool, whose URL you can find at the very top of the thread list for Prostate Cancer. Just copy and paste it into your browser, register and follow the links. All the information you need should be in your father's pathology report. Based on his PSA of 5.0, his PSA doubling time is 9 months. I think you will find he has many good options, and it describes the upsides and downsides of each in detail.

Also worth investigating is whether CyberKnife, HDR Brachytherapy or proton therapy may be good options, perhaps with an IMRT boost. Maybe with hormone therapy as well. Florida has so many good options for treatment. There are several CyberKnife centers, and several that offer HDR brachy (which is less common than LDR seeds). In Jacksonville, the U. of FL offers proton therapy.

While boards rules prohibit us from specific doctor recommendations, a method I always use to check out potential doctors is to go to pubmed.com and search "doctor's last name"[Author]. This will give you the doctor's publications in peer-reviewed prestigious journals. I've found that the better doctors usually publish. The principle author is listed first, and sometimes the supervising author is listed last, so look for doctors who show up in those positions.

Doctors will almost always recommend whatever their specialty is, because that's what they personally have had the most success with. Since you don't have much time to wait for appointments, some of the multi-disciplinary prostate cancer treatment centers may be a good option. MD Anderson, Memorial Sloan Kettering, UCLA, UCSF,Duke, Mayo, Johns Hopkins, U of Washington (Seattle) are all among the US News and World Report top-rated centers for both cancer and urology, although some are known for specific specialties (e.g., Johns Hopkins for surgery, and U of Washington for seeds).

Wishing your father a complete recovery,
Allen

 
Old 03-30-2011, 05:41 PM   #6
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Today was an overwhelming day. So much information! I read and researched all day & night yesterday, and today we met with another urologist for a second opinion, and with the Lynn Cancer Center to discuss radiation.

My head is swimming with information, options, and questions. In the next day or two, as I process the info, I'll start to post it.

But before I go any further, I want to send my profound gratitude to Tim, Jim, and Allen for responding to my original request for information. First off, Tim, you recognized immediately the urgency and anxiety in my post. Your response was like a much-needed cyber hug, and it completely accomplished it's intended goal: to calm me down. The fact that a cyber-stranger would be so perceptive about that, and take the time to reach out and get me to take a deep breath (when I am just yet another new Nervous Nellie to this board) has been just astounding to both my father and me.

Jim, I see the time you take and the sheer volume of information that you personally send to nearly every person who reaches out on this board. I had already taken your advice and read nearly every post here about Gleason 8-10, as well as everything else I had time to read on radiation vs. surgery before I posted my request. For nearly every post, nearly every desperate plea for information, there you were. The information you provided me was more valuable than the 3 prior days of research that I did on my own, and it prepared me for our doctor's visits today. When we visited the urologist and the radiologist today, I was armed with a 2 page shopping list of detailed questions and statistics from studies about various treatments.

As a matter of fact, when my father asked both doctors what they would do if they were in his situation, they both replied the same thing: They pointed to me, and said, "The first thing I would do is have a daughter like that with me to ask those kinds of questions."

Thank you again for your help. As I work through my notes, I'll start to post the information we received.

Will to Win
Loving Daughter to a Great Dad

 
Old 03-30-2011, 08:12 PM   #7
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Wow, I'm so tired I can't keep the most simple facts straight.

My apologies. I was trying thank Tom, and I kept calling him Tim. Maybe better to just say thank you, gentlemen, for your amazing help.

Question for you Jim: Please tell me more about your statements about Avodart.

Will to Win

 
Old 03-31-2011, 06:43 AM   #8
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Good morning willtowin,

I hope you have had a decent sleep. You wrote in your latest post:


Quote:
Originally Posted by willtowin View Post
Wow, I'm so tired I can't keep the most simple facts straight.
That's a common experience after the diagnosis for both the patient and supporters alike. You are doing fine. After I was diagnosed, despite being thoroughly familiar with the Internet at work, it took me months before I found online resources.

Quote:
My apologies. I was trying thank Tom, and I kept calling him Tim. Maybe better to just say thank you, gentlemen, for your amazing help.
You're welcome. That's what we are here for.

Quote:
Question for you Jim: Please tell me more about your statements about Avodart.

Will to Win
I searched my earlier post, and I'm figuring that this must be the statement to which you are referring:

Hopkins is especially known for surgery, though it is also known for general excellence and research. However, I personally am not impressed with their overall institutional approach to hormonal therapy; they may have some individual clinicians who are excellent however. I am aware that some of their premier prostate cancer researchers disagree sharply with their justly famed and heroic surgeon Patrick Walsh over some hormonal therapy issues, a therapy which I am convinced he does not understand thoroughly, especially the role of finasteride and Avodart. You have closer locations that are at least as expert in radiation.


Dr. Walsh for years has denigrated the use of a class of medicine known as "5-alpha reductase inhibitors" (5-ARI). There are two medications in this class, Proscar, which is now available generically as finasteride and which I have taken continuously since 9/17/2000, and Avodart. Their main but not sole function is to sharply reduce the conversion of testosterone into a much more dangerous fuel for prostate cancer known as DHT, dihydrotestosterone. These drugs also have other functions, such as reducing blood supply to prostate cells, including reducing the supply to tumors. A number of leading medical oncologists who dedicate their large practices solely to prostate cancer all use the 5-ARIs as key elements in their hormonal therapy approaches for many of their patients. DHT is considered the more important androgen not only by them but by the vast majority of doctors and researchers who focus on prostate cancer.

However, there are at least two very prominent and great surgeons, Drs. Patrick Walsh of Johns Hopkins U. and William Catalona, now of Northwestern U., who have been trying to persuade the world that testosterone is the most important androgen and that dealing with DHT is not important and is probably harmful. The simple fact is that these two great surgeons simply do not understand the role of DHT and the drugs that address it. Most unfortunately, they think they do, they are adamant about it, and they have buffaloed some less knowledgeable professionals into thinking they are right.

The latter group, unfortunately, included a number of voting members of an FDA advisory panel that voted against using finasteride for prevention of prostate cancer in a hearing last December 1. There were other reasons with more validity why such use was challenged (such as targeting the right group, long-term use and expense, availability of active surveillance as an option, availability for prevention already under off-label procedures), but Dr. Walsh's stand was simply wrong. At a recent conference of prostate cancer researchers that I attended as a survivor representative, I spoke to two of Dr. Walsh's colleagues about his stand, and both disagreed strongly with him. One of them was a very prominent and highly respected prostate cancer researcher. With very few exceptions, the research literature that you can review with the aid of www.pubmed.gov clearly and repeatedly states that DHT is more important for prostate cancer patients than testosterone. However, that's not saying that testosterone is not important; it is, just not as important.

Use of one of these drugs, finasteride or Avodart, or both, is not necessary for all patients on hormonal blockade, as a few of us make very little DHT after our testosterone has been reduced to almost nothing. However, the vast majority of us will continue to make DHT, and some of us make a lot of it, even with testosterone sharply reduced. Therefore, after a lot of study from my layman's perspective, I'm convinced these drugs are capable of playing a vital role for a great many of us patients.

Was this more than you wanted to know? While probably so for the immediate issue, the discussion may help you realize early that recognized experts in prostate cancer are often not so expert when they are operating outside the scope of their recognized expertise. That's especially true of many surgeons when they address radiation, but it works the other way too.

Take care,

Jim

 
Old 03-31-2011, 07:52 PM   #9
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

After seeing two more doctors yesterday, I have a more complete picture of my Dad's PC, and his test results. And I will try to relate the options they gave us, although very confusing.

PSA 12/15/2010 = 4.69. There is a handwritten note on the lab report that says, "Repeat in 2 months, if still elevated then we need prostate biopsy."
PSA Free = .581
PSA Free % = 12.4

PSA 2/16/2011 = 5.75
PSA Free = .552
PSA Free % = 9.6

Prostate Biopsy 3/3/2011
Specimen: 12 sites, 4 are positive, 1 is atypical, "suspicious"
1. R base = Gleason 4+4=8; 2.5mm; 15% of tissue
2. R mid = Gleason 4+4=8; 1.5mm; 9% of tissue
3. R base lat = Gleason 4+4=8; 5mm; 31% of tissue
4. R mid lat = Gleason 4+4=8; 5.5mm; 37% of tissue
5. R Apex = sm. focus atypical glands; "suspicious"


CT Abdomen w/ and w/o contrast 3/3/11 = Negative CT abdomen & pelvis

Nuclear Medicine whole-body bone scan 3/15/11 = Normal bone scan; no findings to suggest metastisis.

I thought there was an MRI done, but there was not. This was the extent of the tests. Neither of the doctors seen yesterday said an MRI was necessary, nor would add much information that would change the direction of the treatment. Both discounted any blood tests to test for further cancer mets.

The first appoitment we had yesterday was at the Lynn Cancer Research Center in Boca Raton. My dad said they gave him a more thorough physical exam than he's ever received from any doctor in his entire life. He was almost afraid they were going to find something else, they were being so thorough.

Here are the points of discussion as I remember them:

1. Start hormone therapy immediately. (Casodex)
2. After 2 months on Casodex, begin radiation treatment. IMRT/IGRT. (using image guided radiotherapy); 44 treatments over 9 weeks.
3. Hormone treatment for 2 years after radiation. (most likey Casodex & Lupron, but that would be up to Dad's urologist.)

They advised against surgery for my dad. Felt that there was a 30%-40%chance that the cancer could be outside the prostate. If so, then he'd still have to go through radiation anyway. And then he'd suffer the side effects of both the surgery and the radiation. And recovering from the surgery at 72yrs old would just make him altogether weaker to fight for his recovery through the radiation. If it was Gleason 7 or below, he might talk about surgery, but still felt that at his age, it was not a necessary procedure.

I asked how confident they were in the Gleason 8 diagnosis. They said I could request a 2nd opinion at Johns Hopkins. Said that it wouldn't change much in his tx plan. If it came back Gleason 9, nothing would change in tx. If it came back Gleason 7, then they would discontinue the hormones beforehand. It would change the outlook, of course, but the radiation would stay the same.

He said there were minimal side effects of the radiation. About 50% of the men have frequent urination, 4-5 during the night, can be treated with Flomax or other drugs. There was a slight risk of scar tissue in the urethra - but rare. Said that bowel problems men had in the past are very rare now with the newer technologies, but there could be some gas and bowel changes, usually minor. Said the biggest complaint down the line is rectal bleeding in 1-2 yrs after treatment.

I asked about Proton Beam Radiation in Jacksonville. They said the significant difference is reported to be reduced side effects, but that there is no proven data on whether or not it's any more effective on the disease progression than the radiation they are doing. He did not discount it for us, but did not sing rave reviews of course. He gave me names of other treatment centers around the country to investigate.

I asked about brachytherapy seeds. He said that was certainly more aggressive than radiation, but that it also came along with way more side effects. They felt the increased side effects came along with minimal gains.

I asked about an hour's worth of questions, more questions than I've ever asked of any doctor at any time, even when my mom had brain surgery. We left feeling a little more encouraged than when we walked in. Of course, that's what they're supposed to do, right? My mother is anxious to start treatment, any treatment, NOW.

Tomorrow, I'll write about the visit with the second urologist, which was a very interesting visit. We also have an appointment with another radiology team that uses Cyberknife Radiation.

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Old 04-01-2011, 05:18 AM   #10
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Will to Win Daughter

Your father couldn’t have better. You are a wonderful daughter. Every step you’ve done is the correct way to handle this disease. Your research and approach will lead your father’s case to a successful treatment.

A note on cyberknife; this type of therapy is known to be “friendly” in regards to precision and acceptable side effects but it is based on hypofractionated radiation delivery, which tends to be rightful for localized targets. That means that success can be expected if the whole of the cancer is still within the prostate gland and have not metastasized to the pelvic areas.
We may believe that your father’s stage 1C is correct but in the group of Gleason scores of 8 to 10 cases, it is common to read reports from patients indicating cancer at the lymph nodes to which the usual IMRT may be more recommended (it also includes an added HT for the same reason). CT and Bone scans cannot ascertain such metastasis, however if your dad opts to cyberknife, I would recommend you firstly to check for a “clean environment” from metastasis, with an additional test such as an endorectal MRI, color Doppler ultrasound or/and (still better) the resent USPIO (Ultrasmall Superparamagnetic Iron Oxide high resolution MRI).

Radiation is done aiming at cure on the first shot. The second may not be possible to be done at the same target so it pays to get that diagnosis precise.

Wishing the best to your father and the whole family.
Baptista

 
Old 04-01-2011, 06:39 AM   #11
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Hi again,

Baptista covered key ground, but I'll add some additional thoughts - just to make sure your mind is nice and full!


[QUOTE=willtowin;4720388]After seeing two more doctors yesterday, I have a more complete picture of my Dad's PC, and his test results. And I will try to relate the options they gave us, although very confusing.

PSA 12/15/2010 = 4.69. There is a handwritten note on the lab report that says, "Repeat in 2 months, if still elevated then we need prostate biopsy."
PSA Free = .581
PSA Free % = 12.4

PSA 2/16/2011 = 5.75
PSA Free = .552
PSA Free % = 9.6

Those two PSA tests indicate a doubling time of 7.04 months, using the nomogram from Memorial Sloan Kettering. While it is more reassuring to have three PSAs spread over 18 months, these two are likely fairly reliable. That doubling time is in the moderately aggressive range - well over three months, but short of nine months that would be more comforting. It is consistent with a higher Gleason cancer.

Quote:
Prostate Biopsy 3/3/2011
Specimen: 12 sites, 4 are positive, 1 is atypical, "suspicious"
1. R base = Gleason 4+4=8; 2.5mm; 15% of tissue
2. R mid = Gleason 4+4=8; 1.5mm; 9% of tissue
3. R base lat = Gleason 4+4=8; 5mm; 31% of tissue
4. R mid lat = Gleason 4+4=8; 5.5mm; 37% of tissue
5. R Apex = sm. focus atypical glands; "suspicious"
That is too much cancer for active surveillance, unless the Gleason were downgraded to a 6. If that happened, four of twelve cores could be within but near the borderline as would 37% for active surveillance.

Quote:
CT Abdomen w/ and w/o contrast 3/3/11 = Negative CT abdomen & pelvis

Nuclear Medicine whole-body bone scan 3/15/11 = Normal bone scan; no findings to suggest metastisis.
It was appropriate to do these scans because of the Gleason 8 that they think is the right score. However, they are almost always negative unless the PSA is really elevated or there are suspicious symptoms. These scans are essentially useless for low-risk cases. The results do rule out large metastases, but not small ones. It takes a fairly good sized tumor to light up the CT scan, and it takes about 10% of bone involvement to indicate cancer on the bone scan. Still, research indicates it is much better to have negative results on these scans from a prognosis standpoint. On the other hand, with improved case management and therapy, even men with unfavorable scans are doing much better these days.

Quote:
I thought there was an MRI done, but there was not. This was the extent of the tests. Neither of the doctors seen yesterday said an MRI was necessary, nor would add much information that would change the direction of the treatment. Both discounted any blood tests to test for further cancer mets.
Blood tests, such as counts of "circulating tumor cells", for mets are promising but not yet ready for the clinic. On the other hand, published research by Dr. Michael Dattoli has demonstrated the importance of the PAP (prostatic acid phosphatase test) in helping predict success for radiation. The Primer describes that on page 51-53, and you can find abstracts of the cited studies in www.pubmed.gov, or you could just do your own search.

The tests Baptista mentioned could provide further definition. At some facilities, they would probably be routine; for example, the Dattoli operation would almost surely want the USPIO done, and the PAP would be routine. Many doctors take the approach of treating the patient and judging from the results whether the treatment was the right approach. The doctors I like are the ones who take care up front to ensure it is likely the patient will benefit before taking an approach, and, if not, they choose a different approach. In your dad's case, if an expert pathology review such as by Dr. Epstein confirms a higher Gleason cancer, thereby ruling out active surveillance (likely), and radiation were not appropriate (unlikely), going straight to hormonal therapy or a combo of that plus a short course of chemo would be the likely approach.


Quote:
The first appoitment we had yesterday was at the Lynn Cancer Research Center in Boca Raton. My dad said they gave him a more thorough physical exam than he's ever received from any doctor in his entire life. He was almost afraid they were going to find something else, they were being so thorough.
That's the way it should be done and is impressive! It's very important to consider whether there are any other serious, especially life-threatening health conditions when choosing a treatment approach.

Quote:
Here are the points of discussion as I remember them:

1. Start hormone therapy immediately. (Casodex)
Personally, I would want that second opinion on the biopsy first (especially to confirm that active surveillance was not an option), and I would get another PSA test before starting the bicalutamide (generic for Casodex) to help clarify the doubling time trend.

2. After 2 months on Casodex, begin radiation treatment. IMRT/IGRT. (using image guided radiotherapy); 44 treatments over 9 weeks.

I'm a believer in using triple blockade, but it might be enough to use just Casodex (now available as much less expensive but equally effective bicalutamide, the generic version).

3. Hormone treatment for 2 years after radiation. (most likey Casodex & Lupron, but that would be up to Dad's urologist.)

A medical oncologist would be a much better choice to manage the hormonal blockade - better than either radiation docs or urologists. Adding a third drug - finasteride or Avodart - adds virtually no negative aspects for the vast majority of us and really increases the punch of hormonal therapy (not so much for its direct influence, but indirectly by making enabling the bicalutamide to do a much better job). Some radiation doctors do use triple blockade for the follow-up, especially for their higher risk cases.

Quote:
They advised against surgery for my dad. Felt that there was a 30%-40%chance that the cancer could be outside the prostate. If so, then he'd still have to go through radiation anyway. And then he'd suffer the side effects of both the surgery and the radiation. And recovering from the surgery at 72yrs old would just make him altogether weaker to fight for his recovery through the radiation. If it was Gleason 7 or below, he might talk about surgery, but still felt that at his age, it was not a necessary procedure.
That makes a lot of sense to me.


Quote:
I asked how confident they were in the Gleason 8 diagnosis. They said I could request a 2nd opinion from Dr. Epstein at Johns Hopkins. Said that it wouldn't change much in his tx plan. If it came back Gleason 9, nothing would change in tx. If it came back Gleason 7, then they would discontinue the hormones beforehand. It would change the outlook, of course, but the radiation would stay the same.
I would get the second opinion from Dr. Epstein. Not only would it determine the true Gleason (based on the biopsy sample), but that would enable your dad to tie his result to research that has been and will be published. I don't follow the logic of discontinuing the advance hormonal blockade for a GS 7, as blockade softens up the cancer for radiation, but perhaps they know something I, with no enrolled medical training, do not. If Dr. Epstein downgraded the Gleason to a 6, as occasionally happens, that could change the picture radically, mainly by opening up active surveillance (with support from lifestyle tactics and mild medication) as a prime option. These docs may know they have a fine pathologist for prostate cancer. Can you find out if that pathologist is a general pathologist or a specialist? If a general pathologist, that would, for me, make it imperative to get that second opinion.

Quote:
He said there were minimal side effects of the radiation. About 50% of the men have frequent urination, 4-5 during the night, can be treated with Flomax or other drugs. There was a slight risk of scar tissue in the urethra - but rare. Said that bowel problems men had in the past are very rare now with the newer technologies, but there could be some gas and bowel changes, usually minor. Said the biggest complaint down the line is rectal bleeding in 1-2 yrs after treatment.
That looks like a reasonable estimate, but I'm not that savvy with radiation. The book by Dr. Dattoli, or chapters in a book by his very talented and occasional research mates in Seattle (Grimm and Sylvester, with Blasko now semi-retired) do a good job discussing side effects, and it's thoroughly research based.

Quote:
I asked about Proton Beam Radiation in Jacksonville. They said the significant difference is reported to be reduced side effects, but that there is no proven data on whether or not it's any more effective on the disease progression than the radiation they are doing. He did not discount it for us, but did not sing rave reviews of course. He gave me names of other treatment centers around the country to investigate. Did not like the Dattoli Center.
Unfortunately the proton folks have not given us long-term results, unlike leading radiation doctors who do not use protons. What they told your dad is correct, both regarding side effects and the lack of proof. Actually, proton for higher risk cases does not look too good based on the published data, but that old data was when they were using a dose now recognized to be too low by the radiation community. Current proton practice would probably yield better results (if they would only publish! ).

Quote:
I asked about brachytherapy seeds. He said that was certainly more aggressive than radiation, but that it also came along with way more side effects. They felt the increased side effects came along with minimal gains.
That combo for higher risk cases is the approach used by Dr. Dattoli and by another well-known outfit to the north, the Radiation Clinics of Georgia, in Atlanta. Fortunately, Dr. Dattoli has published impressive long-term results for higher-risk cases; unfortunately, the RCOG has not. Dr. Dattoli has published research on the side effects and reported his own statistics in his recent book. I'm thinking the "way more side effects" - I know those are your words, but likely their thoughts, is excessive. We have had at least one participant on the board, bwhitney, who has taken that approach. Unfortunately, he has a post treatment colonoscopy that should not have been done, and he has suffered a lot because of that.

Quote:
I asked about an hour's worth of questions, more questions than I've ever asked of any doctor at any time, even when my mom had brain surgery. We left feeling a little more encouraged than when we walked in. Of course, that's what they're supposed to do, right? My mother is anxious to start treatment, any treatment, NOW.
You are doing the right thing by keeping your poise. Your mother needs to understand the key importance of taking careful aim at this thing. "Ready, careful aim, fire." Not: "Ready, fire, then aim." I'm making light of this, but it is very, very important!

Quote:
Tomorrow, I'll write about the visit with the second urologist, which was a very interesting visit. We also have an appointment with another radiology team that uses Cyberknife Radiation.
I believe your careful research will pay big dividends. When you get just a little time, look into the lifestyle tactics and mild medication to help against the cancer and to support and enhance therapy. Is your dad on a statin drug? Unless there's a reason against his being on a statin, that would seem a wise thing to do. A little coenzyme Q10 needs to be taken daily when we are taking statins.

Take care and keep on learning,

Jim

 
Old 04-01-2011, 09:29 AM   #12
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Jim & Baptista,
Thank you for your replies, and for keeping me on the right path. Each day I wake up and check this board, eager to see the new information and where my research will lead me to for that day. If nothing else, I feel better just having a sense of direction, and feel that we are taking control by becoming informed, rather than this dark thing taking control of us.

In a little bit, we are headed out to investigate Cyberknife. I am armed with questions from everyone's replies to me.

Jim, I have so much to answer to your information from your last post, that I can't wait to get back and start typing. Avodart --- we need to have a long discussion about Avodart.

When I get back later today, I'm signing back on here and will start typing it all out. Please stay tuned.

Will To WIN!!

 
Old 04-01-2011, 11:54 AM   #13
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

willtowin
At your father's age surgery is probably out and unnecessary anyways. Check out Proton therapy which I had at Loma Linda but is available in Jacksonville, Brachytherapy at a leading institution not a local hospital, or other radiation therapies. Investigate them all taking into consideration your father's overall health, physical condition, whether he is sexually active, and likely side effects.
Bob

 
Old 04-01-2011, 06:56 PM   #14
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

Okay, back from the next Radiology Center to discuss Cyberknife and other options. Baptista, your post to me made just good common sense. The more I learn, the more these things are becoming clearer. You can't shoot arrows in the dark, and expect to hit your target with any accuracy.

Jim, your point about having a some additional history of PSAs is well taken. I think my Dad was getting tested several times each year, so I'll see if I can't get that information. However, there might be other information I've discussed below that might change the reliability of any of his PSA readings.

Also, regarding your comment about the usefulness of the CT and whole-body scans, the doctors have all echoed your statements: They are not very sensitive tests and for his clinical picture they would expect the scans to be negative. But your additional information that dad's prognosis is still better with the negative scan, and even still could have great results with an unfavorable scan, is comforting nonetheless.

To continue yesterday's information:

Our 2nd appt. yesterday was with <a doctor that> said prostate cancer is the "majority of his practice." He is also the most direct and confident physician we've seen to date, and while that felt quite overbearing to me, it imparted a sense of comfort to my parents. I think they needed to feel that someone was taking control of the situation.

We sat in his office, with the walls literally wall-papered with thank-you notes. (I joked that his mother must send him a thank you note every day.) He did not do a physical exam. He did, however, inquire if there was a history of prostate cancer, or cancer of any kind, in our family. (There isn't.) I found that curious that the prior Radiation Oncologist, as thorough as he seemed to be, never asked that. But I suppose that is neither here nor there.

The doctor started out very confidently, and strongly told us -- in his opinion -- in his strong opinion, that is --- what he felt the two absolute most vitally important things were that we needed to consider in choosing a treatment, even more so than what the treatment actually is: 1) The plan that is put together, and the team of people who are putting the plan together. And 2) The age of the technology of the machines. But not just the machines. The software, the computers, the imaging devices...everything. He said he would not refer people to certain places simply because their machines were years old.

<the doctor> immediately ruled out surgery, for all the same reasons as yesterday's Radiation Oncologist did, and echoing the same reasons that everyone on this board is already telling me. He said although he is a big fan of surgery, no need to make Dad go through the side effects of both, when he would likely need radiation anyway. And he felt that many of today's technologically advanced radiations, combined with hormone tx, resulted in as good or better outcome as surgery in certain cases. Based on age, based on G8, he felt surgery was not a good option at all. (Okay, so the surgeon advised against surgery. I'm thinking that's a good sign.) At least we are starting to get some consistency in information, even if only to rule out an option. He also ruled out seeds, for reasons that echoed much of what I've already read, and I think at this point, we're comfortable with ruling that out as well.

<Doc> focused a lot on one medication that my Dad's been taking for his BPH for about 12 years: Avodart, saying he felt that Dad's treatment choice was going to be ruled largely by the Avodart he'd been taking, because it was "muddying" his clinical picture.

Doc explained how Avodart suppresses PSA. Actually, he said, they don't know if it's being suppressed, or being masked, which he pointed out were two very different things. Doc said that for a G8, he would have expected much higher PSA results. In addition, he said that typically for Gleason 8, the PSA might already not be a good indicator of the state of the disease (something I had read previously on this board, almost verbatim). He said when you combine those facts, with the fact that Dad has been taking something that artificially lowers or masks the PSA, it makes it difficult to know what his real status is.

Doc said there was a 4-yr study completed last year, where they were able to show that Avodart decreased the incidence of prostate cancer in a sample of men against a placebo group. However, he said another curious outcome was that of the men who did get prostate cancer, there were more aggressive cancers, high Gleason scores, than in the placebo group. I asked him what percentage of his practice were Gleason 8-10, and he replied, "10%.....and nearly all of them were on Avodart."

Folks, I have to tell you that statement hit me, my mom, and dad like a train slamming into us. I could see the emotions, the pieces of the puzzle being put together, running over my father's face. Here is a man who does everything he's supposed to do -- no smoking, no drinking, eats right, exercises, has hypertension & BPH, no other medical history, and has never had cancer of any kind in his entire extended family, who has been taking Avodart and developed a high-risk aggressive cancer.....from a medication where other men on this medication seem to be getting the same thing. Now I know there are a lot of men who "do all the right things" just like my Dad, and still get cancer, and still get Gleason 8. And up until this minute, we thought that was my Dad's situation. But there's that Avodart....

I can't help but believe that the "hypothetical patient" describes my father exactly.)

Doc said that because of the Avodart suppressing his PSA, they really did not have a clear picture of Dad's clinical status, and that clinical formulas that they would use to determine treatments in other cases were not going to be as valuable as they would be if he presented with this status without the Avodart. That being said, he told Dad to stay on it for now, because they needed the PSA levels to stay low, and they didn't want to see what would happen or risk a PSA spike if he went off of it. Essentially, Dad was already self-treating his disease with a hormone that might have created this very disease.

I asked if a second opinion on the Gleason Score was needed, and he echoed what we've heard from three different doctors now...."it wouldn't change anything, we'd still recommend the same treatment." Doc also said that he knew of the lab that did my dad's path report, and he felt confident in their abilities, not so much for certain other labs he's had experience with (this Doc was not the one who did the biopsy nor who chose the lab). And he said that even with a different reading on the Gleason score, they still wouldn't have an accurate picture, because they would not have confidence in the accuracy of his PSA scores. Finally, he said even if the Gleason came back different, Dad's Avodart has essentially already started his hormone treatment, whether it was appropriate for his scores or not. (Dad is still going to send his biopsy slides to Johns Hopkins anyway for an expert reading.)

Doc referred Dad to be seen by a doc that offers brachytherapy, Cyberknife, Rapid Arc, and True Beam Radiation. The Cyberknife was their newest machine, acquired within the last few months. He also stressed image-guided radiation with gold markers. Said this was a very important key to targeting the proper areas, and having the least amount of side effects from misplaced radiation.

He discounted Proton Beam Radiation when I asked. He said that it shows a lot of promise, and he's watching it closely with optimism. But he felt it hadn't been used enough specifically in Gleason 8 cases like Dad's, and he echoed what everyone else on this board keeps saying: there are few if any good controlled studies to show the long term efficacy, or the specific efficacy with Gleason 8-10. (He also cautioned me in reading studies to be aware of how the studies were set up. He said many studies are set up in such questionable ways, that the results cannot be weighted too heavily.)

If Dad were G7, he would feel more comfortable with Proton Beam. He also said because there was a 30-40% chance that the cancer has grown beyond the margins, Proton Beam might be "too targeted" of a treatment for my Dad's Gleason 8. He emphasized again that their guesstimates of how likely the cancer was encapsulated vs. spread was also based somewhat on Dad's PSA readings, which of course we can't rely on at this time.

Like the prior Radiation Oncologist seen yesterday, he recommended starting hormones immediately, he wrote a script for Casodex, and then to start Lupron in 2-4 weeks. He said he would most likely recommend 2 yrs of hormones, based on the number of biopsies, and the G8 score.

My parents liked the doctor and my dad wants to fill the Casodex script and start it right away. I want him to hold off until we can seek some more medical advice, maybe a medical oncologist, and get the biopsies read by Hopkins. But in light of the fact that he's been taking the Avodart for so long, it doesn't seem to be much of a further stretch, from what I've learned so far, to at least start the Casodex. That makes Dad feel some control that he's starting to actively treat, and it certainly calms my mother, who just wants to feel that we're doing something, anything, instead of going from doctor to doctor.

Me, I'm skeptical of them all by now. I am recognizing that each doctor we see is as much of a salesperson, a pitchman, of their newest-latest-and-greatest multi-million dollar machine that is better then the next guy's newest and greatest machine. And if you're not impressed by their technology, than there's always the thank you notes covering the wall. They each have their own procedures, protocols, and treatments designed to cure of course, but also to capture as much market share as they can.

And each one feels that what they offer is the best, either because that's all they know, or because they rely on research, but even their research may be of questionable quality, or they may not be aware of all the applicable research that exists. Medications meant to cure cancer can give you cancer. Many of the "best" protocols today - how can we know the 10 year prognosis when these treatments may have only been around for a few years? We go to the doctor wanting treatments that have studies proving success and long life 10 years later, yet we also want to use the newest technology, not the dated machines that were used in those studies 10 years ago. And what they offer truly might be the best....but there is no real way to know for sure. In the mean time, the cancer clock ticks away.

I have to say that I've read through these boards night and day since one week ago today. The number of men of all ages who have been helped here, as well as the number of frightened wives, sons and daughters trying to hang on to our men, who you all have helped to calm so expertly....well, I am just amazed by it all. And extremely, profoundly, humbly grateful. The doctors I've been speaking with KNOW that I'm doing my research. And even if there seems to be no real answer on picking the right doctors/salesmen, I feel that walking in the door armed with information ahead of time, rather than sitting there with our heads in our hands wiping our tears, has put us much more ahead in this game.

I'll write about our education about Cyberknife Radiation tomorrow. But I can also tell you that Baptista called it correctly, before we ever met with the doctors.

Dad is starting his Casodex tomorrow.

Will To Win Daughter

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Old 04-02-2011, 01:20 PM   #15
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Re: Dad just diagnosed last week Gleason 8: Where to Begin?

APPROVED BOARDS AND THOSE WE CANNOT USE

For all who are interested, we can use www.pubmed.gov because it is a Government site and therefore fits under the rules of use. Some other sites do to, but unapproved sites are usually caught by the monitor, and they (and we, temporarily) are removed. I've used a few myself, inadvertently, and fortunately found them and used the edit feature to delete the site and change it instead to an acceptable reference.

 
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