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Old 11-16-2008, 01:30 PM   #1
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why is my dad psa 8 and gleason 8 the urologist says it is aggressive

why is my dad psa 8 and gleason 8 the urologist says it is aggressive but nuclear/cat scan was negative? This is a reoccurance of 8 years ago when he had stage I and was only given radiation.

 
Old 11-16-2008, 03:39 PM   #2
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Sorry to hear there are problems now. Has this been a sudden rise to a PSA of 8, which is very high following treatment for prostate cancer- or was this the PSA and Gleason prior to his treatment a number of years ago? What program has the urologist recommended or put your dad on now? What type of radiation treatment did he have? What is his age? Has he consulted with more than one doctor?

 
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Old 11-16-2008, 10:21 PM   #3
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

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Originally Posted by daff View Post
Sorry to hear there are problems now. Has this been a sudden rise to a PSA of 8, which is very high following treatment for prostate cancer- or was this the PSA and Gleason prior to his treatment a number of years ago? What program has the urologist recommended or put your dad on now? What type of radiation treatment did he have? What is his age? Has he consulted with more than one doctor?
My dad is 72. About 8 years ago he had radiation for 5 weeks ( I am not sure what type). He was a high risk for surgery due to heart problems. The urologist said that last years PSA was normal. So I don't understand how in 1 year it became so high and aggressive. I asked him if he can have radiation again, he said no. He started him on 2 week hormone treatment and on Thursday we will return for a Lupron shot. We will then return in 3 months. The Urologist originally said that the cancer probably spread due to the high Gleason score and that he was very sorry. Then after receiving the results he said that they are not always 100 % accurate, that the nuclear/cat scan were negative and that was good. I am not sure what other question to ask or what we should do next. I asked for a referral for Radiation, but now I don't know if we should go since he said that radiation is not an option since he had it already. I am the oldest daughter and my dad rely's on me for decisions. HELP!!!! Any suggestions or comments are appreciated! I am a nervous wreck! Thank you!

 
Old 11-17-2008, 04:44 AM   #4
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

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Originally Posted by giari3 View Post
My dad is 72. About 8 years ago he had radiation for 5 weeks ( I am not sure what type). .... I asked for a referral for Radiation, but now I don't know if we should go since he said that radiation is not an option since he had it already. I am the oldest daughter and my dad rely's on me for decisions. HELP!!!! ...
I obviously don't know what led to the decision to do five weeks of radiation 8 years ago- as that seems like a shorter term of treatment than most get (usually 8 weeks for external beam, unless it was in combination with brachytherapy when 5 weeks would have been fine). But what matters now is dealing with where you go.

My non-medical opinion would agree with the urologist that further radiation is not an option. Even if he could have it, if the cancer is outside the area treated by radiation it would not be useful. But hormone treatments of various types have been used by many to keep the cancer in check, so you
should definitely remain very hopeful. That's not an area that I have much knowledge about, but there is one man that's a frequent poster on this board, IADT3since2000, that has successfully controlled his cancer for many years without having had either surgery or radiation. I'd suggest you look up some of his posts, as they would give you considerable information as well as background for formulating questions when you meet with the doctor later this week. He will likely respond to your post as well.

Good luck- hope some of this helps!

 
Old 11-17-2008, 10:37 AM   #5
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Hello giari3,

First off, your dad is lucky you are helping him! It really helps to have helpers when you have this disease, especially younger helpers who are familiar with the web and current ways of figuring things out.

I don't have much time at the moment but will get back within a day or so. Daff asked key questions, and it helps to see your answers. Here's one more: do you know how fast your dad's PSA was going up before he was diagnosed? It would help if we can calculate the rate of increase in the year before as that helps assess aggressiveness during recurrence.

The urologist's hormonal blockade drug program appears to be a very typical and sound way to start; he probably prescribed Casodex or flutamide first, as that takes care of an unlikely but serious potential problem that can be caused by the shots within the first week or so. The hormonal blockade is highly likely to knock the cancer way back on its heels, and it may turn out to be all that your dad needs to control the cancer for the rest of his life!

To me (no medical education but a lot of School of Hard Knocks information) it is a good sign that you dad did not recur for 8 years, and of course it is a good sign that the CT scan result was negative. Do you know if he had a bone scan?

Follow-up prostate cancer therapy has advanced greatly in the past decade, and it's likely that a lot can be done to help your dad.

Keep your spirits up,

Jim

 
Old 11-17-2008, 09:12 PM   #6
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Thank you so much for your reply? It really helps when you talk to someone that has been through this and any and all positive comments are appreciated. Rosie

 
Old 11-17-2008, 09:30 PM   #7
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Quote:
Originally Posted by IADT3since2000 View Post
Hello giari3,

First off, your dad is lucky you are helping him! It really helps to have helpers when you have this disease, especially younger helpers who are familiar with the web and current ways of figuring things out.

I don't have much time at the moment but will get back within a day or so. Daff asked key questions, and it helps to see your answers. Here's one more: do you know how fast your dad's PSA was going up before he was diagnosed? It would help if we can calculate the rate of increase in the year before as that helps assess aggressiveness during recurrence.

The urologist's hormonal blockade drug program appears to be a very typical and sound way to start; he probably prescribed Casodex or flutamide first, as that takes care of an unlikely but serious potential problem that can be caused by the shots within the first week or so. The hormonal blockade is highly likely to knock the cancer way back on its heels, and it may turn out to be all that your dad needs to control the cancer for the rest of his life!

To me (no medical education but a lot of School of Hard Knocks information) it is a good sign that you dad did not recur for 8 years, and of course it is a good sign that the CT scan result was negative. Do you know if he had a bone scan?

Follow-up prostate cancer therapy has advanced greatly in the past decade, and it's likely that a lot can be done to help your dad.

Keep your spirits up,

Jim
Thank you for taking interest in responding to my question. I can ask the Urologist specific questions. He is very pleasant and seems to be very concern about my dad. I asked him about my dad's PSA from last year and he said it was normal. I don't know what normal means. All he said is that that the biopsy resulted in PSA 8 Gleason score. He was almost sure that the cancer had spread. Then when I called for results he said the nuclear and cat scan where negative. I will ask if it was a bone or cat scan. What has been the PSA since being diagnosed with PC. Because I think he said that there was 3 and that they kept going up that's why they did the biopsy. I sense in the Dr.'s voice that it is really bad. I did not ask him for my dad's life span, but I am assuming that if he was gravely ill, that he would tell us that he only has a few months to live. OMG I don't want to ask about his life span. I know that there is no cure, and eventually he will probably get worse. My dad is very positive. We have changed his diet drastically. He drinks pomergranate juice and eats black berries and all that healthy stuff it makes him feel better about the whole thing. I would like to ask you if you have heard of PROSTASOL? or crinum laftifolium. I have read that some people have had positive results lowering their PSA. Well, please let me know if there are any other specific questions that I should ask the Urologist. Thank you so much for your time. I really appreciate your suggestions, knowledge and experience!!! I hope to talk to you soon. Rosie

 
Old 11-17-2008, 09:35 PM   #8
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Quote:
Originally Posted by daff View Post
I obviously don't know what led to the decision to do five weeks of radiation 8 years ago- as that seems like a shorter term of treatment than most get (usually 8 weeks for external beam, unless it was in combination with brachytherapy when 5 weeks would have been fine). But what matters now is dealing with where you go.

My non-medical opinion would agree with the urologist that further radiation is not an option. Even if he could have it, if the cancer is outside the area treated by radiation it would not be useful. But hormone treatments of various types have been used by many to keep the cancer in check, so you
should definitely remain very hopeful. That's not an area that I have much knowledge about, but there is one man that's a frequent poster on this board, IADT3since2000, that has successfully controlled his cancer for many years without having had either surgery or radiation. I'd suggest you look up some of his posts, as they would give you considerable information as well as background for formulating questions when you meet with the doctor later this week. He will likely respond to your post as well.

Good luck- hope some of this helps!
Thank you so much for your response and time. I appreciate it!!! I am not good with computers and I hope that I am replying correctly. Have a great week! Rosie

 
Old 11-18-2008, 04:08 AM   #9
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Quote:
Originally Posted by giari3 View Post
... I am not good with computers and I hope that I am replying correctly...
Hi Rosie-
Yes, you're doing fine, although the moderators prefer that we not respond with the entire quote in replying if it's long, but it's easy to remove parts not needed, as I've done above. Hope you have time to follow some of Jim's posts, as he has been successfully controlling his prostate cancer for years with dietary changes and hormonal blockade treatment.

 
Old 11-18-2008, 08:20 AM   #10
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Quote:
Originally Posted by giari3 View Post
why is my dad psa 8 and gleason 8 the urologist says it is aggressive but nuclear/cat scan was negative? This is a reoccurance of 8 years ago when he had stage I and was only given radiation.
psa is an early detection blood test for prostate cancer - gleason score goes up to 10 (the highest) - if his previous blood tests were within normal and it suddenly jumped to 8, that shows it being pretty aggressive - ct scan being negativemeans it hasn't spread anywhere else - since he has already had radiation his options might be limited - 2nd and 3rd opinions can't hurt

 
Old 11-18-2008, 03:31 PM   #11
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Hi Rosie,

I'm going to insert some comments in green.


Quote:
Originally Posted by giari3 View Post
... I can ask the Urologist specific questions. He is very pleasant and seems to be very concern about my dad.

The urologist's good attitude is a big mark in his favor. I also like the way he is starting hormonal therapy. But see below.

I asked him about my dad's PSA from last year and he said it was normal. I don't know what normal means. All he said is that that the biopsy resulted in PSA 8 Gleason score. He was almost sure that the cancer had spread. Then when I called for results he said the nuclear and cat scan where negative. I will ask if it was a bone or cat scan.

The doctor's limited explanation of the PSA is typical, as many patients and supporters are not interested in more detail, though it truly often makes a difference if they have a more detailed understanding of their cases and know the actual numbers.

Your dad actually has a right to his medical records, and most doctors are happy to provide them. Ask to look at and get copies of his old PSA from last year, and copies of the reports of the scans. You may be able to ask some questions when you see the paper reports. To save the doctor's time and make the visit more efficient, call his staff ahead of time and ask if they could have the reports available before the appointment, or even if they could fax them to you. Of course, they may need some release from your dad if they do not understand that you are authorized by him to get the reports. And see below.



What has been the PSA since being diagnosed with PC. Because I think he said that there was 3 and that they kept going up that's why they did the biopsy.

Ask about the old PSA reports, and you could explain that you are trying to figure out if his PSA rose at a rate of more than 2.0 in the year in the year before he was diagnosed, so you can get a clue about aggressiveness now, based on the work of Dr. Anthony D'Amico and his team in 2005. Here's where the relationship issues might get a little delicate. You don't want to insult the doctor, but you do want him to realize that you don't want your dad treated like just another old person. From your manner and questions the doctor should realize that you are trying to learn everything you can that might help your dad, and that you would like the doctor to be your and your dad's ally. Seems simple, but some medical people get huffy when they aren't treated like a god from Mount Olympus. Dr. D'Amico is a leading prostate cancer researcher as well as being a leading radiation doctor practicing at one of the famous Harvard area institutions, and there is a good chance your dad's doctor has heard of him and this paper. However, since the doctor is a urologist and probably has a full time job just keeping up with urology surgical developments and his practice, he may not be familiar with this paper. (The D'Amico team did a parallel paper for patients recurring after surgery, also finding that a rise of more than 2.0 made a substantial difference in aggressiveness.) If the doctor wants detail, their paper on radiation recurrences was published in the Journal of the American Medical Association, July 27, 2005, Vol. 294, No. 4, pp. 440-447, entitled "Pretreatment PSA Velocity and Risk of Death From Prostate Cancer Following External Beam Radiation Therapy."

I sense in the Dr.'s voice that it is really bad.

While I'm impressed by the doctor based on what you have said, my strong impression is that the kind of specialist known as a "medical oncologist" is often in the best position to treat prostate cancer patients who have evidence of serious recurrences after initial therapy. I see it the same way that valzaeth does - a second or third opinion could be very important to your dad's welfare.

I would like to expand on one of valzaeth's other comments, the one about a negative CT scan meaning no spread. It does mean that it hasn't spread anywhere in the lymph system in a big enough size to be detected by a CT scan. That's good news, but we need to be aware that it takes a pretty big tumor to be picked up by a CT scan. It usually won't detect a substantial tumor that is still about the size of a beebee for instance, but it probably will pick up a pea sized tumor. There are other scans that are more precise.


I did not ask him for my dad's life span, but I am assuming that if he was gravely ill, that he would tell us that he only has a few months to live. OMG I don't want to ask about his life span. I know that there is no cure, and eventually he will probably get worse.

These days, with all the terrific advances in case management and treatment, it would be very hard for a doctor to reliably predict a short lifespan. Docs were more confident when I was diagnosed back in December 1999, with two respected doctors giving me a prognosis of five years (three good years, two declining years). Well, that is obviously out the window now. Many of us have had faulty prognoses like that! There are no guarantees, and your dad may have a hard time, but many men in his situation do quite well.

My dad is very positive. We have changed his diet drastically. He drinks pomergranate juice and eats black berries and all that healthy stuff it makes him feel better about the whole thing.

That's great - both his attitude and change in diet! There's a lot more to be said about diet/nutrition/supplements, as well as hopefully exercise (including strength exercise with weights or resistance as well as aerobic exercise), stress reduction, and a posititive attitude!

I would like to ask you if you have heard of PROSTASOL? or crinum laftifolium.

Yes, and I'll get back to you on it. Prostasol actually is a form of hormonal therapy, though not a formally approved medical therapy. Some patients have reported good results. I would put more trust in formal hormonal blockade therapy which has been far more studied, but Prostasol may turn out to have a role at some point. I'll try to get back on crinum laftifolium, which I have never heard of. That makes me suspicious!

I have read that some people have had positive results lowering their PSA.

Yes! The hormonal blockade should lower your dad's PSA a lot. While it is not yet widely accepted, adding finasteride or Avodart as a third drug may increase the impact. The three drug approach has been at the core of my therapy for most of nine years now. It would be quite reasonable for the doctor to be unfamiliar with that approach as not much has been published about it in medical journals.

Well, please let me know if there are any other specific questions that I should ask the Urologist.

Since your dad is 72 with recurring prostate cancer that is being treated with hormonal blockade, he is quite likely to experience a decrease in his bone density unless that side effect is countered. The great news is that it can be countered, perhaps with the kind of bisphosphonate that is taken orally (like Fosamax, Boniva - both of which I've taken, am on Boniva now, or Actonel. There are more powerful bisphosphonates, especially the extremely powerful Zometa, but that apparently increases the risk of heart issues, which is certainly what your dad does not need. That said, Zometa may, on balance, be a good choice. Your dad should probably have a bone mineral density assessment done, probably with a Quantitative CT form of the scan rather than the more common DEXA scan.

It is extremely common for older prostate cancer patients to be very deficient in vitamin D, a condition which we now believe contributes substantially to prostate cancer. You should ask the doctor about running a vitamin D assessment to see if your dad needs to get supplemental vitamin D. Even though he lives in a sunny area - California, he is old enough that his skin has probably lost most or all of its ability to make vitamin D.


Thank you so much for your time. I really appreciate your suggestions, knowledge and experience!!! I hope to talk to you soon. Rosie

I hope this is in time for the consultation tomorrow, and I'll write more later this evening if I can.

Keep up your fine work, and take care,

Jim

 
Old 11-18-2008, 10:16 PM   #12
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Thank you so much for all that thorough information. Daff was right about you. You have a lot of information and it is very helpful. I am learning so much. I feel a little better talking with someone that has been through this before and knows so much. I really appreciate your time!!! I had to cancel my dad's appoint for next week. But, I don't know if we should go to the radiation oncologist because the Urologist said that they would not do radiation again because he had it done already about 8 years ago. So do you think it would just be a waste of time? Have a good one!! Rosie

 
Old 11-18-2008, 10:17 PM   #13
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Thank you for your response!! Very helpful. Rosie

 
Old 11-19-2008, 06:03 AM   #14
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Quote:
Originally Posted by giari3 View Post
... I don't know if we should go to the radiation oncologist because the Urologist said that they would not do radiation again because he had it done already about 8 years ago. So do you think it would just be a waste of time? ...
Rosie-
While I initially said I agreed that further radiation is not a likely best option, given that it is not always easy to get appointments with specialists, and you already have this one set up, maybe it would be good to keep it. If nothing else, you may gain some clarification on questions you have and you may get this doctor's opinion as to what treatment options are available, even if not ones he or she can do. Have you rescheduled the appointment with the urologist?

 
Old 11-19-2008, 11:26 AM   #15
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Re: why is my dad psa 8 and gleason 8 the urologist says it is aggressive

Quote:
Originally Posted by giari3 View Post
... I had to cancel my dad's appoint for next week. But, I don't know if we should go to the radiation oncologist because the Urologist said that they would not do radiation again because he had it done already about 8 years ago. So do you think it would just be a waste of time? Have a good one!! Rosie
Hi again Rosie,

You're welcome. We are all here to help each other, and each of us learns things that can help others as we cope with prostate cancer. You and your dad may soon be helping others.

I see the radiation appointment the way daff does. You will get a different point of view and may learn some important information, even if radiation is no longer a treatment option. By the way, it's important to hear radiation ruled out from a radiation doctor, as many urologists are understandably not up to speed with recent key developments in radiation for recurring prostate cancer, and your dad's doctor may be in that group, despite his best efforts and intentions. For instance, the radiation oncologist is probably familiar with the D'Amico paper that I mentioned, and he may yet offer an opportunity for follow-up radiation, though that seems unlikely. There are a few radiation experts, like Dr. Michael Dattoli in Florida, who are fairly often able to safely deliver follow-up radiation after initial radiation, including some cases that other radiation doctors would not want to handle. On the other hand, sometimes the issue is quite clear cut based on the initial amount and pattern of radiation.

There are two outstanding books that have extensive treatment of hormonal therapy; both would be helpful to you and your dad. The first published is the second revision (2005) of "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano. (The first edition is highly similar except for four specific updates/editions and editorial corrections.) The second, published in 2006, is "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers, MD. Dr. Myers faced his own challenging case of prostate cancer nine years ago, having both hormonal and radiation treatment (as well as special surgery to remove some suspect lymph nodes). In addition to great information on hormonal therapy and diet, as well as leads to other therapies (such as Leukine) for very advanced cases, Dr. Myers provides a huge dose of optimism.

Dr. Dattoli has co-written books for patients on radiation therapy as well as text books for doctors. His book "Surviving Prostate Cancer Without Surgery - The New Gold Standard that Can Save Your Life and Lifestyle," 2006, has some information that is helpful for recurring patients.

Take care,

Jim

 
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