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Old 12-03-2008, 03:31 PM   #16
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Re: Salvage radiation after Hormone Therapy?

Quote:
Originally Posted by flyfisher37 View Post
...

I had a radical prostatectomy three years ago in October. There has been undetectable psa on every six month checkup until the last one this past October. It was 0.1. I had a Gleason 8 cancer, and apparently it might have returned after almost 3 years.

My urologist, of course, said we will do another psa test at the end of this month to see what's happening. He mentioned that if it went up, I would be a candidate for salvage radiation of the pelvic area.

However, after my RP, he said that everything was clear. The margins of my prostate gland were clear and all the peripheries were clear as well. But since I had a Gleason 8 cancer, it would seem that perhaps some cancer cells escaped in my blood system. I guess this would mean that they could be anywhere in my body. Because of this possibility, I personlly think that hormone blockade therapy would be the only viable answer.

I still think hormonal blockade could be excellent for you (from my layman's perspective and experience with intermittent hormonal blockade), but I have expanded what I think is possible this year to include radiation in some advanced cases, in particular, my own. One of the key doctors in my journey - Dr. Robert ("Dr. Bob") Leibowitz, has vigorously argued the point you mention (that a non-local, systemic approach is essential) for years. While I have never actually consulted Dr. Bob, his view that cancers like mine were systemic (throughout the body) rather than local has influenced me for years. It was from him that I first learned that well over half of men with early stage prostate cancer - men considered excellent candidates for surgery or local radiation, actually have prostate cancer cells in their bone marrow before surgery (83%, Lange, Vessella and team, 2007 paper) and a hefty percentage of such men will have the cells in their blood! (But for other readers, don't get scared here - read on!)

However, a fairly obvious question is why far more than a majority of such men do very well with surgery or radiation, having no recurrence for many, many years if ever? The answer seems to be that many of these wayward, far journeying prostate cancer cells, are not capable of becoming established metastases. Research suggests that they simply die off, with some becoming dormant. Dr. Myers makes this statement in a review of a pertinent study (page 3): "Only a small percentage of men with cancer cells in their bone marrow are destined to develop recurrent disease! If you carefully read the literature on RT-PCR detection of prostate cancer cells in bone marrow and blood, the inescapable conclusion is that a vast majority of these cancer cells fail to develop into bone metastases...."

Dr. Bob was not the only doctor who readily believed that many higher risk cancers were systemic. However, there was a recent study that those of us should know about who are trying to decide whether to invest in radiation or rely on hormonal and other therapies for our recurring and high-risk cancers. Dr. Myers explained it in a recent edition of his Prostate Forum newsletter (Vol. 10, Number 5, published January 2007, "The Process of Cancer Spread & Testosterone Replacement), and he has said that it is one of those studies that is so significant that it is making a big change in the way he practices medicine for his advanced prostate cancer patients. In short, he is now seeing a greater role for radiation where there are indications the disease has spread beyond the prostate and would previously have been thought to be widespread, beyond the range of radiation.

The study cite is Swanson, G.P., et al., Predominant treatment failure in postprostatectomy patient is local: analysis of patterns of treatment failure in SWOG [Southwest Oncology Group] 8794. J Clin Oncol [the Journal of Clinical Oncology], 2007. 25(16): pp. 2225-9. The study compared how patients with locally advanced disease did under surgery alone versus surgery with radiation. The authors found that adding radiation to the prostate bed reduced metastatic disease and recurrence indicated by PSA at all levels of PSA after surgery. Dr. Myers writes, "For the worst patients with a post surgical PSA greater than 1.0 ng/ml, adjuvant radiation therapy, which was done using techniques no longer regarded as state-of-the-art, reduced the risk of distant metastatic disease from 44% for those who had surgery alone to 18% in those who had adjuvant radiation therapy." He later adds: "... I can think of only one explanation. The cancer cells that would eventually lead to the development of distant metastases were at that time [for some period after surgery] present in the pelvis and only later migrated to bone and other sites...."





I have read about some of the side effects of radiation, and I don't like what I read. Urinary and bowel problems seem to be the main issues after radiation. I've already had my share of urinary problems after my RP. ... So this is why I'm not too crazy about having radiation .

That makes sense. I don't have the figures handy, but I've heard that patients with urinary and bowel problems after an RP often have worse problems after radiation is added.

...

So my thinking is, why not just start hormone therapy and see what happens. If it ever gets to the point where I need radiation in the pelvis area or somewhere else, would having the hormone therapy first, affect the effectiveness of the radiation?

That makes sense to me. I have heard it's important to do radiation before the PSA rises to more than 1.0 to get the best results, but the hormonal blockade would probably take care of that. At least PSA could be reduced to less than 1.0 with many patients. But that's a question for a doctor who is expert in radiation and hormonal therapy for prostate cancer, not for me.

Well, this is getting rather long, so I'll come back later.

Jim

I'm sure that there must be someone out there that has gone through this same scenario and perhaps they will share their experience with me.

Thanks so much......Flyfisher37

 
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Old 12-05-2008, 08:56 AM   #17
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Re: Salvage radiation after Hormone Therapy?

Hi Jim,

As always, you seem to manage to come through with words of encouragement. You make a good case for salvage radiation, even though I dread to think of the side effects. I will see my urologists on the 17 th of this month, and I hope he has time to sit down and talk to me at length about my concerns and some of the remedies that he can perform.

That's one nice thing about this board: whenever I get down and discouraged, it seems I can always come here and talk to someone who has been through it or has lots of knowledge to pass on ( like yourself ). It's nice to know a person like myself is not alone when it comes to this battle with cancer.

Take care and have a great day.....Lionel

 
Old 12-05-2008, 01:42 PM   #18
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Re: Salvage radiation after Hormone Therapy?

Quote:
Originally Posted by flyfisher37 View Post
Hi Jim,

... You make a good case for salvage radiation, even though I dread to think of the side effects. I will see my urologists on the 17 th of this month, and I hope he has time to sit down and talk to me at length about my concerns and some of the remedies that he can perform.
...Lionel
I'm glad to be able to help.

Can you also consult a medical oncologist about hormonal blockade? Dr. Fernand Labrie, an expert and pioneer in hormonal blockade at Laval University in Quebec is not too far from you (same time zone?), and he or a close colleague would probably be able to address the benefits of hormonal therapy in detail as well as how to manage any risk from the option of deferring radiation, as well as the reverse - radiating now, probably with supportive hormonal blockade. Perhaps he would even answer questions over the phone. I've been surprised that some leading experts in the US will sometimes do that without charge.

By the way, Dr. Labrie is not large in size but he has a powerful personality. I've heard some other leaders advise taking his opinions with a grain of salt, or even the whole salt shaker, but their caution may be because he is well in the forefront of new developments rather than because he is wrong. I don't know how you can tell for sure at this point. (I'm convinced he is not correct that continuous hormonal blockade is better than intermittent blockade for appropriate patients, but I also believe his view is reasonable, respectable and rooted in evidence. I and the leading oncologists I attend to closely just think that other evidence is more persuasive.)

Toronto also probably has some experts in hormonal blockade, but none are prominent enough in communicating with the survivor community in the US to come to mind, in contrast to Dr. Labrie and a well-known prostate cancer oncology research community in Vancouver.

Jim

 
Old 12-06-2008, 08:38 AM   #19
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Re: Salvage radiation after Hormone Therapy?

Hi Jim,

Thanks for the reply. After reading your posts and checking out various websites about the pros and cons of hormone therapy and salvage radiation, I am still, at this point in time, uncertain as to which path I should pursue. I would like to have the salvage radiation first before anything else, just to satisfy myself that I'm am indeed trying every method available to beat this disease. If that fails, then of course hormone therapy would be my only recourse and I would be okay with that. After reading your latest post about the benefits of adjuvant radiation ( salvage radiation in my case ), I can see a lot of merit in going that route. Of course, as I mentioned before, with the scar tissue problems I had before, I know that side effects are cumulative and I will end up with severe bladder neck scar tissue problems. This was one of the first things my urologist wanted me to be aware of when I last talked to him. And of course, fecal incontinence can also be a problem. If it wasn't for these unwanted side effects, I wouldn't hesitate to have the radiation before attempting anything else.

I think the best thing for me to do before I get too wound up trying to resolve this situation, is to wait and talk to my urologist and see what he recommends. And the Juravinski Cancer Center in Hamilton has lots of highly qualified personel and some of the latest equipment from what I understand. They do have a PET scanning machine there, but I don't know if it is useful for locating prostate cancer cells. They also have a cyclotron, but I have no idea what that would be used for. I do know that they are always looking for candidates for clinical trials. Maybe I could get involved with something like that. I would like to talk to some of the oncologists and EBR personel there before I make up my mind. I'm sure I will have that opportunity soon.

Thanks again for your suggestions and information. That helps a lot!! Lionel

 
Old 12-06-2008, 10:44 AM   #20
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Re: Salvage radiation after Hormone Therapy?

Quote:
Originally Posted by flyfisher37 View Post
...
I am still, at this point in time, uncertain as to which path I should pursue. I would like to have the salvage radiation first before anything else, just to satisfy myself that I'm am indeed trying every method available to beat this disease.
...
I realize I have only a fraction as much knowledge on the subject as Jim has (and you too, by now, with the research you've done). I do recall hearing about two schools of thought as to whether to have hormonal treatments prior to or after proton beam radiation (assuming hormonal blockade was a suggested step for an individual patient). One of the treatment centers suggested that its patients get the hormonal blockade prior to the radiation, and another, after the radiation.

I'm not saying this to confuse things even more. I know you're still checking this thing out with more doctors, and that's probably the best thing you can do. Hopefully you'll find out that there's no one known "best" way, but a range of equally good choices. I wish you the best of luck in figuring out your alternatives.

 
Old 12-06-2008, 02:18 PM   #21
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Re: Salvage radiation after Hormone Therapy?

Hi Lionel: Jim is probably the most knowledgeable person on these boards. I would take his advice and go see an Oncolgist. He would be the Dr. who would do the salvage radiation and he would also do the hormone therapy.
I know why you are worried about side effects, I had EBR back in 2001 and the spring of 2007 I started to have some incontinence, it is really a pain. I looked for a book that Jim recomended about diet but I haven't been able to find it. I use to drink a lot of water but now I can't because of the leaking. Good Luck to you. Rich

 
Old 12-07-2008, 08:37 AM   #22
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Re: Salvage radiation after Hormone Therapy?

Hi Rich,

I'm sure you're quite accurate when you say that Jim is probably the most knowledgeable person on this board. I'm constantly amazed at the amount or research and study he has done! Of course people like yourself and Daff have also certainly contributed very useful information that I'm grateful to receive. Every bit of information helps, especially since I walked in here totally unaware of just about everything related to prostate cancer.

I do plan on talking to the experts at the Juravinski Cancer Center when I get there, and seeing what they come up with. I'm sure that with the number of patients that they treat and the different scenarios that they've seen, they can recommend the best treatment for my situation.

The waiting to find out what's going to happen is a wearysome thing. It's constantly on my mind and it seems like everything else in life is put on hold until this is resolved. Of course, I realize it must be this way for everyone that has walked this path before.

It is great though to know that I have friends like yourselves in my corner. It sure helps!

Lionel

 
Old 12-08-2008, 07:56 AM   #23
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Re: Salvage radiation after Hormone Therapy?

Quote:
Originally Posted by Dickiedo View Post
Hi Lionel: ... I looked for a book that Jim recomended about diet but I haven't been able to find it. I use to drink a lot of water but now I can't because of the leaking. Good Luck to you. Rich
Good morning Rich,

That's probably Dr. Myers' book, "Beating Prostate Cancer: Hormonal Therapy & Diet."

It has been available for a couple of years now but has been hard to find unless you knew where to go.

It is now widely available, and you should be able to find it with just a little effort.

Thanks for your kind words.

Jim

Last edited by IADT3since2000; 12-08-2008 at 07:58 AM. Reason: Added thanks just after posting.

 
Old 12-08-2008, 09:19 AM   #24
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Re: Salvage radiation after Hormone Therapy?

Good morning Lionel,

I appreciate the kind words from you and from Rich.


Quote:
Originally Posted by flyfisher37 View Post
Hi Rich,

I'm sure you're quite accurate when you say that Jim is probably the most knowledgeable person on this board. I'm constantly amazed at the amount or research and study he has done! Of course people like yourself and Daff have also certainly contributed very useful information that I'm grateful to receive.

I feel like I know a lot about certain aspects of the disease and its treatment, such as hormonal therapy, but I knew so little at the start - didn't even know what digital rectal exams were or that they were standard practice for screening; I thought that a PSA of around 10 was near the maximum for PSAs. When I was diagnosed nine years ago (next week; biopsy nine years ago tomorrow), I had no idea at all that my own efforts in learning and personal tactics beyond doctors and medicine could make any difference. As I gradually learned that my own effort could make a difference, I felt a growing powerful motivation to learn and keep learning. Then, when you know someone else would benefit from what you have learned, you want to pass it on.

Many of us know a lot about certain features of the disease, treatments, and their side effects, but know much less about other points. For instance, I'm glad daff participates for many reasons, but he clearly knows the most about proton therapy, an area that I know only in a general and cursory way. Rich and many others have good points too. It's important that we all contribute, even if its our impressions as newcomers to the board. Newcomers bring fresh energy and often knowledge about the latest developments. Sometimes they are the first to encounter new twists on established methods. Also, while we can't debate on the board, many of us have different viewpoints. While he doesn't participate that often, have you noticed that shs50, Bob, has been at this a long time? So have others who can help.

...

The waiting to find out what's going to happen is a wearysome thing. It's constantly on my mind and it seems like everything else in life is put on hold until this is resolved. Of course, I realize it must be this way for everyone that has walked this path before.

Its probably very hard or impossible for you to get your thoughts away from prostate cancer for a while and just enjoy life, but that is a worthwhile objective. My wife and I tried to have a "cancer free day" every now and then, striving for no thoughts about or involvement with cancer. It took a while before we succeeded, but we began to enjoy non-cancer life experiences while I continued to learn about the disease and deal with it. Hopefully you will one day be able to just forget about it except for those times when you can help others who are just starting the journey.

Take care,

Jim


...Lionel

 
Old 12-08-2008, 12:39 PM   #25
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Re: Salvage radiation after Hormone Therapy?

I have been to Boarders 5 times looking for that book by snuffy. They keep telling me that they would order it and have it in a few day's but it never happened. The last time I was there they said that they couldn't find it. Rich

 
Old 12-08-2008, 06:05 PM   #26
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Re: Salvage radiation after Hormone Therapy?

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I have been to Boarders 5 times looking for that book by snuffy. ... The last time I was there they said that they couldn't find it. Rich
Hi again Rich,

It's available from a major, very well known retailer, but it's not one we can mention on this board.

Jim

 
Old 12-09-2008, 02:53 PM   #27
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Re: Salvage radiation after Hormone Therapy?

Thanks Jim for the info. i will do a little searching. Rich

 
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