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 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. I developed bladder neck scar tissue and I had to self catheratize myself for almost a year to keep the scar tissue at bay. The scar tissue finally matured and now I don't have to use a catheter. But if I developed even more scar tissue after radiation, there is the possibility that I will have to use a catheter for the rest of my life. So this is why I'm not too crazy about having radiation .
And what happens if after radiation, it is discovered that I still have a psa reading which means that there are still cancer cells somewhere. At that point, hormone therapy would be my only choice. Plus I would have to live with the other problems caused by radiation.
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?
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.
Hi Flyfisher: I went through the same procedure. I had surgery then 39 EBR treatments now I am on hormone therapy. If you Oncologist thinks your cancer is in the bed where the prostate was then I think I would opt for the radiation. By chance if it is still there you could be cured. Hormone therapy isn't a cure it just keeps the cancer from growing by cutting off its food supply. Yes there are some side effects but it really depends on the Dr. and the equipment that they are using. All of the treatments have some sort of side effects, we just learn to live with them.
Rich
Flyfisher:... If your Oncologist thinks your cancer is in the bed where the prostate was then I think I would opt for the radiation. By chance if it is still there you could be cured. ...
As you've probably read from my many prior posts, I had proton beam radiation at University of Florida Proton Therapy Institute in Jacksonville, and have been an advocate of that form of radiation. That's due to the fact that it's highly targeted, doing less damage than other forms of radiation, and has no exit dose of radiation after its energy is discharged. I don't know to what extent that's used in cases like yours, but it might be at least worthwhile checking it out, just to get another opinion. There are five centers in the U.S. now, and none would be particularly convenient, location-wise, but it still might be something to look at.
Hi Rich,
Thanks for responding to my post. I have a couple of questions for you: was your EBR x-ray or proton beam or something else and did you have any severe side effects , such as bladder neck scar tissue, from the radiation?
Proton beam radiation sounds like the way to go, rather than concentrated x-rays. However, I don't know if that is available in my area, but I will be finding out in the near future.
I may seem like I'm asking a lot of questions at this point in time, when I haven't yet had my second psa test to see if in fact my cancer is returning. It's just that I know that being in the category of 8-10 Gleason is not a nice place to be and these cancers can be very aggressive and persistent. Time will tell.........Lionel
Hi Lionel: I had my radiation back in the spring of 2001. At that time there wasn't any Proton Beam. If you could get that treatment that is the way to go. I really didn't have any side effects until I started on the Hormone therapy a year and half ago. Now I have some incontinence. It comes a goes, some days I wear a pad but most of the time I can control it. I am sure it is the residual remains of the radiation and not the hormone treatment. All of these treatments are nasty but without trying were would we be.
I have been fighting this since 1995 and will continue to do so, so hang in there and think positive. Rich
Hi there all-
I thought I'd join in and let you know of my husband's experience which is similar to yours.
He had the DaVinci surgery with PSA 9.6 and Gleason 4+3. All margins clear but did have extra capsular extension. His first PSA came in at .1 which is the lowest our lab reports. At his 6 month PSA it was .3 so we redid after a couple of weeks to make sure it wasn't a lab error and it was still .3. Waited another 3 months to see the trend and it was .7 at his 6 month checkup. Not good. Met with radiation oncologist and set up for treatments over the next 7 weeks but before we started the procedure he did have a prostascint. This did show a particular hot spot so this was an area targeted along with the prostate bed. PSA before radiation started had gone up to .9. With this doubling time we felt we needed to act quickly. I believe I've read where if salvage radiation starts within two years and PSA is below 1. you have a better chance of a cure. And that is what we were striving for - a cure. The dr gave us a 60% chance of cure at that time.
My husband was never fully continent after surgery. Also wore pads but manageable. After radiation it has set back his incontinence but we are still hoping he will get back to at least preradiation level. He also has on occassion some fecal incontinence which is most upsetting to him. But it is not often. Other than that he feels well and never had burning or nausea. Maybe a little more tired but not bothersome.
His first PSA after radiaiton came back at .2 which is very good. In the next two weeks he'll have another so time will tell if we got lucky.
I hope your next PSA results prove nothing to worry about and you continue feeling well.
Thanks for your input. I certainly hope that everything turns out well for your husband.
The problems you describe after radiation, is what scares me. I had problems after RP, as you read, and I certainly don 't want to have them again, or even worse! I guess I was really lucky after my surgery, because I only had to wear a pad for about 2 weeks and then I was okay after that. The scar tissue thing scares the hell out of me, because I had to make 2 trips to the emergency room after my RP because I couldn't urinate! Most uncomfortable and scary! The problem took about 6 weeks to show up after surgery.
I wouldn't hesitate to have the radiation, if it wasn't for the complications. I might still go that route, but I haven't decided yet. I see my urologist next month and depending on the results, I will have to decide on something.
I'm assuming that the radiation you had was the primary treatment and not salvage radiation. I also am assuming that because you are on hormone therapy, the radiation didn't eliminated the cancer. Too bad. Have you had any severe side-effects from the hormone therapy? And how do you feel otherwise?
Hi Lionel: I had surgery in 1995 and 5 year's later my PSA started to rise. My Uro that did the surgery retired and the Dr that took his place said that we would wait till the PSA got to 10 then he would start hormone treatments. I went to a different Dr right away because I didn't like that idea. The next Uro sent me to a Oncologist and I started EBR treatments in May of 2001. That worked until the spring of last year when the PSA started to rise again, that is when he started me on the Zoladex.My PSA has been 0.01 for the last 4 test so he took me off the hormone treatment for the next 6 months. My health is good otherwise, I try and stay active and do a little exercise. I guess time will tell. Good Luck to you. Rich
Hi all - I had prostate surgery in 1999 - PSA 6.4, Gleason 7. In 2003 it rose to 0.1. It moved slowly for the next 4 years but in 2007 it was at 0.7 and my doctor believing that residual cancer was in the bed of the prostate recommended radiation. I opted for this rather than homonal therapy. I went to City of Hope in California and had 36 treatments with Tomo Therapy. It has been about a year and 5 months since the procedure and I am at <0.1. The side effects of Tomo therapy are very minimal and would recommend this procedure to anyone.
That Tomo Therapy you mentioned sounds like a great way to go! I wouldn't hesitate to have that done, but I have no idea if that is available in this area. I will find out though next month, when I go back to see my urologist.
I checked it out on the internet and was very impressed with the precision that this therapy offers. It is truly amazing how technology can improve on something if given enough time. This technology would eliminate all the concerns I have about receiving salvage radiation, if it gets down to that.
It must have been discouraging for you to see your cancer return after 5 years from surgery. And then to see it return again after 6 years from having the radiation. I was really upset to find out that my cancer has returned after 3 years from surgery. I can't say for certain that it has returned, but I will know for sure next month. With having had a Gleason 8 cancer, and from what I've read about aggressive cancers of this grade, chances are that it will return. I read that up to 40% of prostate cancer patients will see their cancer return. What a bummer!!
I will probably follow a course of treatment similar to your own in the future. The only nagging question in my mind is where the cancer is. If I knew for sure it was only in the pelvic area, I would opt for the radiation, even if it isn't the latest technololgy. But If the cancer has spread, and there is a good possibilty it has because of the parameters ( negative margins, clear peripheries, no capsular penetration, Gleason 8 ), then ADT would be all thats left for me.
It's only been three weeks since I found out that it might be returning and since I started posting on this board, I gotten a ton of useful information that I will take back to my urologist. It's nice to have some idea of what's going to happen rather than walk into his office totally ignorant.
I'm sure I will have more questions to post as I think of them. I hope that the regulars on this board don't get tired of seeing me.
That Tomo Therapy you mentioned sounds like a great way to go! I wouldn't hesitate to have that done, but I have no idea if that is available in this area. I will find out though next month, when I go back to see my urologist.
... Lionel
Lionel,
My recollection is that TOMO therapy was developed by a doctor at the U. of Wisconsin, which geographically would not be that far from you. (I haven't had time to confirm the location.) Would your Canadian health system cover treatment across the border?
I too have seen information on TOMO therapy as our well regarded community hospital is one of the relatively few that offers this therapy. I took a tour and was impressed.
I want to make some other comments when I have more time.
Unfortunately, my health care system in Canada does not cover any treatment out of country. Apparently, it is possible, with a ton of paperwork and a doctor working on your side, to get the government to make an exception and give permission to get treatment out of country and have it covered under OHIP ( our health care system ). The big drawback is finding a doctor who wants to go through this long and laborious task and also, the time frame involved is a long one. A person could be expired before permission was ever given.
I did go across the border just south of Buffalo NY to a cancer center in Orchard Park to get a bone scan when I first learned I had a Gleason 8 cancer. My own urologist wanted me to have a bone scan, but would have taken a couple of months to get it under our system. Naturally, I wanted to have one right away so I had a better idea of where I stood. I called over there on a Monday and was there the following Thursday getting my scan. It cast me $ 1,000 but if was worth it to find out. It was negative.
Our health care system is free, but very slow. I think part of the reason for that is the fact that so many people take uncessary advantage of the system and simply bog everything down.
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.
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.
... 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.
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
...
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.
(But for other readers, don't get scared here - read on!)
