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Old 01-12-2011, 11:08 PM   #1
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To be or not to be....radiated???

Irv and I have been faced with varying opinions. He had his radical prostatectomy on November 9th. His pathology was disappointing with 80% involvement of cancer in his prostate, extensive extracapsular extension, a unifocal positive margin and seminal vesicle involvement. His staging is pT3B and his Gleason score is 7 (3+4).

His post op PSA, 8 weeks after surgery was 1.19....very disappointing and very concerning.

So, my first question is, is it possible that the PSA may drop a little still?
I'm not really expecting it to.

The more important question is.....follow up treatment.....

Irv has had a history of ulcerative colitis. He's only had flare ups twice in his life and the last one was several years ago. Some have the opinion that, most likely, Irv's cancer is not confined to the prostate bed and radiation will just prove to be another invasive approach with nasty permanent side effects and no benefit.

However, radiation is Irv's only shot at a cure, albeit a small chance, I'm figuring.

So, should Irv just opt to go straight for the hormone therapy and bypass the radiation? Or should he have both?

Irv was also offered to be involved in a clinical study with a combination of chemo and hormone therapy. I'm not sure how that would be a greater benefit than hormone therapy alone.

So, I'm hoping for some opionions on this matter. I hope to hear from some of you soon.

Regards, Rhonda

 
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Old 01-13-2011, 09:47 AM   #2
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Re: To be or not to be....radiated???

Hi Rhonda,

I've spread myself thin lately and am aware you have a number of questions. I'll try to get to them all soon, but here's what I know about your post below.


Quote:
Originally Posted by srhonda61 View Post
Irv and I have been faced with varying opinions. He had his radical prostatectomy on November 9th. His pathology was disappointing with 80% involvement of cancer in his prostate, extensive extracapsular extension, a unifocal positive margin and seminal vesicle involvement. His staging is pT3B and his Gleason score is 7 (3+4).

His post op PSA, 8 weeks after surgery was 1.19....very disappointing and very concerning.

So, my first question is, is it possible that the PSA may drop a little still?
I'm not really expecting it to.
It probably will increase, and the rate of increase, it's velocity, will be one clue about the strength of the cancer. However, while 8 weeks is enough time for the PSA to settle down after the surgery from a biology textbook standpoint, my impression is that more time is often allowed before the first PSA. I suppose it's possible that it may still settle somewhat, but 1.9 is high enough that a small reduction probably would not influence decision making. Before starting another therapy, it would be wise to get one or, better, two PSAs with some space between them. That will give you a useful clue about the aggressiveness of the remaining cancer.

Quote:
The more important question is.....follow up treatment.....

Irv has had a history of ulcerative colitis. He's only had flare ups twice in his life and the last one was several years ago. Some have the opinion that, most likely, Irv's cancer is not confined to the prostate bed and radiation will just prove to be another invasive approach with nasty permanent side effects and no benefit.
However, radiation is Irv's only shot at a cure, albeit a small chance, I'm figuring.
You raise two questions (at least): likelihood of side effects, and effectiveness of radiation in your husband's case.

As you know I have not had radiation, though I considered it enough to prepare, with a tatooing session scheduled before I chose to rely on hormonal therapy. I hope you will get some responses from radiation patients who have had recurrences after surgery, like Lionel.

My understanding is that radiation often, perhaps typically, aggravates pre-existing urinary and GI tract conditions. These days, targeting has improved a lot, and dose delivery can be highly modulated; that has led to a great reduction in side effect frequency and seriousness, but there still is some. There may be some PubMed abstracts on this issue - side effects of modern radiation methods on urinary and GI pre-existing conditions. Having access to a leading radiation doctor and facility would be especially important, I think. (Consulting a surgeon about radiation side effects would probably be useless; it's likely his knowledge will be obsolete, but he probably would not realize or admit that. A radiation oncologist (best), or medical oncologist would be good choices.)

Regarding radiation's likely effectiveness, your worry that radiation will likely be useless because the cancer is probably not confined to the prostate bed makes me think you heard that from a surgeon. Unfortunately, as expert as many good surgeons are with steel and thread in their hands, they really do not appreciate and do not understand modern radiation and what it can do. I've run into quite a few whose knowledge of radiation for prostate cancer seems to date from their medical school days, a period years ago when inadequate doses of radiation were routinely prescribed. Radiation docs back then did not know the doses were frequently inadequate, and even if they had known, they did not have the equipment and planning software to be able to deliver the needed doses without heavy side effects to the rectum and elsewhere. How that has changed! They can now deliver highly targeted radiation at appropriate high doses with relatively low impact on the rectum and other organs. Both apparent cure rates (at least freedom from relapse per PSA and other indicators) and side effects avoidance rates are far better now. Diligent radiation oncologists know all about this, but, again, some surgeons, even good ones, are in the dark ages here.

Dr. Charles "Snuffy" Myers, MD, our eminent fellow-survivor who had aggressive radiation therapy, and specialist in treating prostate cancer, used to believe, along with the rest of the medical community, that patients with some indication of post-surgery spread likely had distant spread beyond the range of radiation. However, a few years ago he was very excited about a study that demonstrated that most such spread actually was still within the range of radiation! He wrote that that study resulted in a major change in his practice. He now sends many such men for a shot at cure with external beam radiation. I'll try to find a citation for that study and send it soon. Please remind me if I do not.

By the way, the study was not done by Dr. Michael Dattoli (Sarasota, Florida), but Dr. Dattoli did publish most impressive long term results for intermediate risk patients. You could find that quickly with a PubMed search. It would probably boost your optimism.

I've been influenced by those encouraging studies for my own case. I'm a bit tempted to have my own shot at a cure with radiation, after using advanced scans to rule out obvious distant spread. However, I'm still doing so well with IADT3 that I think I'll stay on that for a while.


Quote:
So, should Irv just opt to go straight for the hormone therapy and bypass the radiation? Or should he have both?
Going straight to hormonal therapy is certainly an option, especially since that would prepare the way for radiation later if you and your husband changed your minds. If I were you, knowing what I do as a layman savvy about IADT and having some facts about your husband's case, I would insist on ADT3, probably Zoladex, bicalutamide, and Avodart, with a bisphosphonate (probably alendronate, aka Fosamax) in support. One of the beauties of ADT is that you can change your mind later. For a very few of us, later sometimes happens quickly as the ADT can be extremely burdensome, especially regarding hot flashes and sweats. However, for the vast majority of those who do have very irritable flashes and sweats (most don't), countermeasures almost always work very well (especially the medications for the flashes/sweats).

To me, single blockade with just an LHRH-agonist drug (such as Lupron or Zoladex, etc.), or probably with an LHRH-antagonist, would be dangerous, with a looming pitfall around the four or five year points.


Quote:
Irv was also offered to be involved in a clinical study with a combination of chemo and hormone therapy. I'm not sure how that would be a greater benefit than hormone therapy alone.
I've been following this, though not closely, ever since that combination was suggested to me back in 2000 by some of the leaders in ADT that I respect so highly. I probably would have tried that if, shortly after consulting with the experts, ADT3 had not worked so spectacularly well, as it does for almost all of us. (I had recently switched from ADT2 to ADT3 and had added the bisphosphonate Fosamax.) The combination of ADT and chemo is a reasonable approach, but it is experimental. If you check PubMed, I'll bet you will find studies published about it. I'm a little skeptical that you and Irv need to go that far at this time, but I don't know that much about the combo.

However, I would reject the trial if the trial rules will not let Irv get ADT3 with bisphosphonate support and the supplements, nutrition, diet and exercise that he wants to do. I'm convinced that ADT3 is far superior to ADT with one drug, and substantial superior to ADT2 for most of us.


Quote:
So, I'm hoping for some opionions on this matter. I hope to hear from some of you soon.

Regards, Rhonda
I hope you hear from others too. Good luck to you both with this.

Take care,

Jim

Last edited by IADT3since2000; 01-13-2011 at 09:54 AM. Reason: Added point about length of time after surgery for 1st PSA.

 
Old 01-13-2011, 10:47 AM   #3
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Re: To be or not to be....radiated???

Seminal vessicle invasion is usually associated with lymphnode involvement. The high psa after surgery somewhat supports this. Unless radiation was given to the lower or entire lymph system it is doubtful that salvage radiation to only the prostate area would result in cure. The colitis would be a very real concern in radiation. I would consult with the doctors about the radiation affects on the colitis and if the risk of damage was high I would not do it, as the curative proabilities are small compared to the high risk of futher damage. HT may be your best bet at this time.
JohnT

 
Old 01-13-2011, 12:47 PM   #4
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Re: To be or not to be....radiated???

Quote:
Originally Posted by IADT3since2000 View Post
Hi Rhonda,

I've spread myself thin lately and am aware you have a number of questions. I'll try to get to them all soon, but here's what I know about your post below.


Jim, no doubt you are a popular guy around here and I appreciate all the time you've spent with me so far.

It probably will increase, and the rate of increase, it's velocity, will be one clue about the strength of the cancer. However, while 8 weeks is enough time for the PSA to settle down after the surgery from a biology textbook standpoint, my impression is that more time is often allowed before the first PSA. I suppose it's possible that it may still settle somewhat, but 1.9 is high enough that a small reduction probably would not influence decision making. Before starting another therapy, it would be wise to get one or, better, two PSAs with some space between them. That will give you a useful clue about the aggressiveness of the remaining cancer.

I would also assume that the PSA will increase. In fact, Irv had a PSA done on December 30th and the result was 1.12 but when the second result was done on January 4th, just to check the validity of the first result, it came back at 1.19. We were told that this was an insignificant discrepancy but I still would have rather had the discrepancy go in the other direction. How long do you think we should wait before getting another PSA done? We have an appointment with the RO on February 1st. Would it be too soon to have another one done before that date?



You raise two questions (at least): likelihood of side effects, and effectiveness of radiation in your husband's case.

As you know I have not had radiation, though I considered it enough to prepare, with a tatooing session scheduled before I chose to rely on hormonal therapy. I hope you will get some responses from radiation patients who have had recurrences after surgery, like Lionel.

My understanding is that radiation often, perhaps typically, aggravates pre-existing urinary and GI tract conditions. These days, targeting has improved a lot, and dose delivery can be highly modulated; that has led to a great reduction in side effect frequency and seriousness, but there still is some. There may be some PubMed abstracts on this issue - side effects of modern radiation methods on urinary and GI pre-existing conditions. Having access to a leading radiation doctor and facility would be especially important, I think. (Consulting a surgeon about radiation side effects would probably be useless; it's likely his knowledge will be obsolete, but he probably would not realize or admit that. A radiation oncologist (best), or medical oncologist would be good choices.)

Regarding radiation's likely effectiveness, your worry that radiation will likely be useless because the cancer is probably not confined to the prostate bed makes me think you heard that from a surgeon. Unfortunately, as expert as many good surgeons are with steel and thread in their hands, they really do not appreciate and do not understand modern radiation and what it can do. I've run into quite a few whose knowledge of radiation for prostate cancer seems to date from their medical school days, a period years ago when inadequate doses of radiation were routinely prescribed. Radiation docs back then did not know the doses were frequently inadequate, and even if they had known, they did not have the equipment and planning software to be able to deliver the needed doses without heavy side effects to the rectum and elsewhere. How that has changed! They can now deliver highly targeted radiation at appropriate high doses with relatively low impact on the rectum and other organs. Both apparent cure rates (at least freedom from relapse per PSA and other indicators) and side effects avoidance rates are far better now. Diligent radiation oncologists know all about this, but, again, some surgeons, even good ones, are in the dark ages here.

Dr. Charles "Snuffy" Myers, MD, our eminent fellow-survivor who had aggressive radiation therapy, and specialist in treating prostate cancer, used to believe, along with the rest of the medical community, that patients with some indication of post-surgery spread likely had distant spread beyond the range of radiation. However, a few years ago he was very excited about a study that demonstrated that most such spread actually was still within the range of radiation! He wrote that that study resulted in a major change in his practice. He now sends many such men for a shot at cure with external beam radiation. I'll try to find a citation for that study and send it soon. Please remind me if I do not.

By the way, the study was not done by Dr. Michael Dattoli (Sarasota, Florida), but Dr. Dattoli did publish most impressive long term results for intermediate risk patients. You could find that quickly with a PubMed search. It would probably boost your optimism.

I've been influenced by those encouraging studies for my own case. I'm a bit tempted to have my own shot at a cure with radiation, after using advanced scans to rule out obvious distant spread. However, I'm still doing so well with IADT3 that I think I'll stay on that for a while.


Irv did see a radiation oncologist who admitted that they try to avoid radiation like the plague when ulcerative colitis is a factor but, he also said that that would be Irv's only chance at a cure. I guess we have to consider what those chances are. It may not be worth the risk. Also, Dr. Fleshner is not just a urologist, but he's also an experienced oncologist and researcher. I'm wondering if you wouldn't mind googling Dr. Neil Fleshner, looking at some info on him and letting me know what your opinion would be.

We've also been communicating with a man who's been a mentor and a cancer survivor for 18 years, Chuck Maack, from Kansas. It would be so incredible for me if you had the opportunity of chatting with him about Irv because I consider the two of you to be such a wealth of knowledge and experience. It is also of his opinion that we should avoid radiation at this point, except for 4 sessions in the chest area to alleviate breast growth and pain during hormone therapy. He's sent me so many papers he's written that I went into information overload and just shut down with a huge sense of stress. However, he is incredible and I think you share a similar opinion on all of this, especially with the opinion that triple blockade is a must.

You mentioned a study published by Dr. Dattoli which refers to "medium-risk" patients. Do you think this would still be referring to Irv's cancer? He is considered high risk and that's what we've always been told. Also, now it seems even more drastic with a post-op PSA of 1.19 and confirmation that, not only is there extracapsular extension and a positive margin, but there was also cancer in the seminal vesicle. I read that there was a study done in Holland, if my memory serves me correctly on the location, that has found that if the cancer went into the seminal vesicle, it is most likely that there is also cancer in the lymph nodes that weren't removed by surgery. So, I'm just wondering, with Irv's level of cancer, what would Dr. Myer's think would be the best protocol of treatment. What do you think, Jim? And would that study you've mentioned still pertain to Irv?

I'm also wondering about the advanced scans which you mentioned to rule out distant spread....I know that the regular bone scan and CT scan aren't sensitive enough and I heard that neither is the ProstaScint scan. I read about the Combidex scan and the PET scan which is new and isn't sugar based, but I don't know if or how we'd have access to them or how accurate they'd be. Are there others I'm not aware of?

Going straight to hormonal therapy is certainly an option, especially since that would prepare the way for radiation later if you and your husband changed your minds. If I were you, knowing what I do as a layman savvy about IADT and having some facts about your husband's case, I would insist on ADT3, probably Zoladex, bicalutamide, and Avodart, with a bisphosphonate (probably alendronate, aka Fosamax) in support. One of the beauties of ADT is that you can change your mind later. For a very few of us, later sometimes happens quickly as the ADT can be extremely burdensome, especially regarding hot flashes and sweats. However, for the vast majority of those who do have very irritable flashes and sweats (most don't), countermeasures almost always work very well (especially the medications for the flashes/sweats).

To me, single blockade with just an LHRH-agonist drug (such as Lupron or Zoladex, etc.), or probably with an LHRH-antagonist, would be dangerous, with a looming pitfall around the four or five year points.


A couple of things here...I read that adjuvant radiation therapy has better results than salvage RT, but I also agree that waitng would be good to give Irv the chance to at least attempt at getting back, somewhat, to what his body was like before surgery...letting everything heal as much as it's capable of healing. However, it seems that, from the opinions that I'm hearing about, once we decide on hormone therapy, radiation is like the forgotten option and will never be up for discussion as a possible treatment again. After hormone therapy fails, we're looking at chemo and then, sadly, the inevitable...whenever that may be.

My other fear is that when I mentioned triple blockade to Dr. Fleshner as being the best option as far as hormone therapy goes, in relation to single or double blockade, his answer was, "It's debatable". He is a very experienced oncologist....How do I argue with that? I've read enough to know that triple blockade would be our choice but telling this experienced specialist that "I read that...." or "He/She said that..." or even "A study was done....."....I just don't think he'd take me seriously...How does one get past that? I know I have lots of questions, Jim, but, really....these are all valid to me and I need to have answers to be able to deal with this in the best possible way.

I've been following this, though not closely, ever since that combination was suggested to me back in 2000 by some of the leaders in ADT that I respect so highly. I probably would have tried that if, shortly after consulting with the experts, ADT3 had not worked so spectacularly well, as it does for almost all of us. (I had recently switched from ADT2 to ADT3 and had added the bisphosphonate Fosamax.) The combination of ADT and chemo is a reasonable approach, but it is experimental. If you check PubMed, I'll bet you will find studies published about it. I'm a little skeptical that you and Irv need to go that far at this time, but I don't know that much about the combo.

However, I would reject the trial if the trial rules will not let Irv get ADT3 with bisphosphonate support and the supplements, nutrition, diet and exercise that he wants to do. I'm convinced that ADT3 is far superior to ADT with one drug, and substantial superior to ADT2 for most of us.


Honestly, Jim, who opts for chemo? So, it would be preferable to stay away from it. As for the supplements, nutrition, diet and exercise, I find that overwhelming in it's own way....not sure what to take and what not to take and how much etc. So far, Irv is taking some supplements...maybe not enough Vitamin D yet...and he still needs to revise that plan...and he's off red meat and most dairy. Maybe once we get to that point, we can precision that too.

Thank you so much, Jim. Let me know if you'd care to communicate with Chuck for just a bit. I'd really appreciate that....kind of like a circle of care for a very special man...If you're both on the same track of thinking, that would give me an unimaginable state of confidence that we are doing the right thing. Let me know, in a private message if you'd like my email address or if I can have yours.

Best Regards,
Rhonda



I hope you hear from others too. Good luck to you both with this.

Take care,

Jim

 
Old 01-13-2011, 12:55 PM   #5
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Re: To be or not to be....radiated???

Quote:
Originally Posted by Johnt1 View Post
Seminal vessicle invasion is usually associated with lymphnode involvement. The high psa after surgery somewhat supports this. Unless radiation was given to the lower or entire lymph system it is doubtful that salvage radiation to only the prostate area would result in cure. The colitis would be a very real concern in radiation. I would consult with the doctors about the radiation affects on the colitis and if the risk of damage was high I would not do it, as the curative proabilities are small compared to the high risk of futher damage. HT may be your best bet at this time.
JohnT
Thanks, John. It seems that what you have to say is the most common thought on the matter, where Irv's case is concerned. Irv and I have talked about this and we're definitely leaning towards the avoidance of radiation. Even though the five lymph nodes taken out during the time of surgery tested negative for cancer, we are aware that there are others which were left behind and those could very well have some cancer in them.

Just wondering, what the opinion is on long term survival with triple blockade in a case like Irv's. I feel like nobody really wants to answer that and that's scarier than not knowing.

Thanks, Rhonda

 
Old 01-13-2011, 05:18 PM   #6
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Re: To be or not to be....radiated???

Very sorry IRV's PSA is detectable after surgery.

Suggest you get several opinion from the best doctors treating recurrence. Sounds like the PCa is still localized which increases the chance for cure. The combination of ADT and RT outcome is published in several papers. The results are confusing and mixed but it seems that there is over a 50% chance for cure if the PCa is localized.

Chris King, MD, UCLA, Mack Roach III, UCSF are a couple names that come to mind.

I am sure there are many others.

Best Wishes,
FredK.

 
Old 01-13-2011, 05:53 PM   #7
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Re: To be or not to be....radiated???

Quote:
Originally Posted by viperfred View Post
Very sorry IRV's PSA is detectable after surgery.

Suggest you get several opinion from the best doctors treating recurrence. Sounds like the PCa is still localized which increases the chance for cure. The combination of ADT and RT outcome is published in several papers. The results are confusing and mixed but it seems that there is over a 50% chance for cure if the PCa is localized.

Chris King, MD, UCLA, Mack Roach III, UCSF are a couple names that come to mind.

I am sure there are many others.

Best Wishes,
FredK.
Thanks for your advice, Fred, but why do you think that the cancer would still be localized. It seems that most are of the opinion that if it went into the seminal vesicle and with the original PSA so high and with the volume of 80% cancer in his prostate before surgery, that it probably has gone beyond the prostate bed. Believe me, I would want nothing more than to think there's a cure for Irv. However, short of that, I want him to be as comfortable as he can possibly be for as long as possible.

It would be really beneficial to me to have some more responses with regards to this matter. Also, remember that I'm Canadian so it would be best if we could stay in Toronto unless we are sure that there is another doctor somewhere else who can do much more for Irv than the doctors at Princess Margaret Hospital.

Thank you
Rhonda

 
Old 01-13-2011, 07:05 PM   #8
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Re: To be or not to be....radiated???

I am a patient like Irv and only know what I read. Failure after surgery is pretty common and a PSA of 1.X after surgery with a Gleason of 3-4 seems like a good chance of localize PCa. However I would want to consult with experts of PCa recurrence/surgery failure to understand all the risk factors and rewards. You may have these experts in your health care center.

Wish You and Irv the best.
FredK

 
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