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Old 09-10-2010, 09:27 AM   #1
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Getting a little confused....

Between what I'm reading and information sent to me by a friend, I'm wondering if surgery is the only option for Irv.

His PSA is 32, 10/10 cores positive, 60% on the right side and 20% on the left, Gleason is 3+4 (20% is 4). Perineural invasion on both sides.

The urologist said that if the cancer hasn't spread (We'll get the results from the CT scan and bone scan on Tuesday, September 14th), then surgery is really the only recommended option at this point. He actually couldn't stress it enough.

However, at this point, I'm guessing that nerve sparing surgery would be out of the question. Irv is just turning 51 on Sunday and I'm 49. This type of surgery comes with huge life altering impact. Of course, if it is, in fact, the only option that makes sense at this point, then that is what we'll do. Irv and I have a lot of life left to enjoy together.

However, now I'm hearing and reading about options such as HIFU and ProstRcision, which I've read are both done on intermediate cases of cancer. I even read that ProstRcision is done on advanced cases.

So, now I'm confused...not to mention freaked out a little by the idea of the high cost of these other options.

I'm looking for feedback from others who may have further knowledge on these options and/or cancer at Irv's more advanced stage.

Rhonda

 
Old 09-10-2010, 04:58 PM   #2
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Re: Getting a little confused....

Hi again and happy weekend Rhonda,

I'm glad you and your husband are still looking at options. I have a certain reverence for Dr. Klotz, based primarily on what looks like brilliant work to me in active surveillance and his long and vigorous record of publications. However, what you've said below makes me wonder if he is subject to the almost universal strong bias of surgeons toward surgery for prostate cancer patients. I'll add some comments in green. I may have to downgrade my opinion of him from nearly super human to just brilliant.


Quote:
Originally Posted by srhonda61 View Post
Between what I'm reading and information sent to me by a friend, I'm wondering if surgery is the only option for Irv.

His PSA is 32, 10/10 cores positive, 60% on the right side and 20% on the left, Gleason is 3+4 (20% is 4). Perineural invasion on both sides.

I do respect Dr. Klotz's judgement whether surgery has a chance to cure your husband's cancer - whether it is one of the viable options, but I'm completely convinced that surgery is not the only option based on what a huge body of research has clearly, unmistakably, established! Normally, given your husband's case characteristics, radiation would probably be judged to have a better shot at curing his cancer. That's because it can reach beyond the prostate, and most often, even if there is spread beyond the prostate, it is not beyond the range of radiation.

The urologist said that if the cancer hasn't spread (We'll get the results from the CT scan and bone scan on Tuesday, September 14th), then surgery is really the only recommended option at this point. He actually couldn't stress it enough.

I'm really surprised that Dr. Klotz would say that, but it fits some of my "rules" from the School of Hard Knocks. The specific rule here is that surgeons will overwhelmingly (but not always) recommend surgery and underrate other therapy options. I believe they are often sincere but have not followed developments with other therapies. Research backs up the impressive success rates for radiation in cases such as your husband's, and I can give you leads to the research if you need it.

However, at this point, I'm guessing that nerve sparing surgery would be out of the question.

That's very likely but not a certainty.

Irv is just turning 51 on Sunday and I'm 49. This type of surgery comes with huge life altering impact.

That's true for most men in your husband's circumstances, though some do unexpectedly well and have minor side effects. For many others, side effects such as impotence and incontinence can be reduced or eliminated with counter measures.

Of course, if it is, in fact, the only option that makes sense at this point, then that is what we'll do.

It isn't! Please believe that!

Irv and I have a lot of life left to enjoy together.

However, now I'm hearing and reading about options such as HIFU and ProstRcision, which I've read are both done on intermediate cases of cancer.

HIFU has been done on low-risk, intermediate-risk and high-risk cases. However, it is essentially a local therapy focusing on just the prostate. As such, it would not be expected to do that well with many intermediate and most advanced cases. The research clearly bears that out.

Data compiled from a published medical research literature search performed by the Prostate Cancer Results Study Group, a group of experts, showed only one HIFU study for intermediate-risk patients that met their quality standards. Average follow-up after treatment in that study was short, about 3 1/2 years, but success was dismal, only about 54% free of recurrence; the likelihood is that figure would have dropped substantially with longer follow-up. That result was the second worst of the approximately 62 studies for intermediate-risk patients in their table. (The worst one was a non-recurrence rate of about 47% for EBRT patients, but follow-up was more than double, at nearly 8 years.) No HIFU studies met the group's quality criteria for high-risk patients, which is understandable for a primarily local therapy.

The various patient series being reviewed around the world also include some HIFU numbers for intermediate and high risk patients, very likely including the study mentioned just above. The recent major French study showed a 5 year non-recurrence success rate of 72% for its intermediate risk patients, which dropped to 63% for patients with seven years since treatment. High-risk patients had 5 and 7 year success rates of 68% and 62%. The recent Japanese study (Uchida) showed similar recurrence free success rates for intermediate patients of 64% and for high-risk patients of 45% at five years of follow-up. Those rates are well below success rates now being achieved by forms of radiation, often combined with hormonal therapy, for intermediate and high-risk cases.



I even read that ProstRcision is done on advanced cases.

That's a "brand" of seeds plus EBRT radiation, but it's far from the only one, and they have failed to publish updated results in respected peer-reviewed journals. Nonetheless, many patients think highly of ProstRcision.

So, now I'm confused...not to mention freaked out a little by the idea of the high cost of these other options.

I'm looking for feedback from others who may have further knowledge on these options and/or cancer at Irv's more advanced stage.

Rhonda
I fear I will confuse you further, but an additional option is to go straight to hormonal blockade therapy, hoping (with a solid but far from perfect basis) that your husband will need it only one time for about a year. There is a new book that has just joined the set of expert commentary on this option. It's called "Invasion of the Prostate Snatchers" by Dr. Mark Scholz and Mr. Blum, one of his patients. The other two classics are "A Primer on Prostate Cancer - The Empowered Patient's Guide," and "Beating Prostate Cancer - Hormonal Therapy & Diet." I recommend all three to get the best handle on hormonal blockade as a realistic option for your husband.

Take care,

Jim

Last edited by IADT3since2000; 09-11-2010 at 04:36 AM. Reason: Two typos.

 
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Old 09-10-2010, 11:34 PM   #3
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Re: Getting a little confused....

Wow...yeah...How does one figure out which is the best option for his case? When your urologist says...it's gotta be surgery at this point, then it's hard to argue with the professional until you have the opportunity to speak to other professionals.

Then again, of course, it would depend on the professional and his/her biases. Tough to figure it all out.

 
Old 09-11-2010, 10:24 AM   #4
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Re: Getting a little confused....

Rhonda,
Prostaricision is a brand name for a combination seed and IMRT procedure done by the Radiology Centers of Georgia. Many institutions do this type of procedure with excellent results for intermediate grade PC. I had the seeds/IMRT combination done about a year and a half ago and psa went from 40 to .1 and I have no side affects at all and was golfing throughout the treattments. Only time will tell if it is effective for the long run, but that's also the problem with surgery. The advantage to combination therapy is that a much higher dose can be delivered with the same side affects of a mono treatment; 140 to 150 gy vs about 81gy for a mono treatment. Some also feel that using two different kinds of radiation results in better killing power than just one as PC cells don't like change and it's harder for them to adapt to two different radiation types than just one.
JT

 
Old 09-11-2010, 10:32 AM   #5
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Re: Getting a little confused....

Thanks, John. Can you please tell me what IMRT is? I wonder if this combination of therapies is practiced in Canada. I'd also like to know more about your cancer at the time you started this therapy. Do you know how many cores you had taken and how many and what percentage were positive? How about the size of prostate? Or if there was perineural invasion? Also, what was your Gleason score? All of this information is helpful to me, even though I realize that all cases are individual.

Looking forward to hearing back from you soon.

Rhonda

 
Old 09-11-2010, 11:42 AM   #6
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Re: Getting a little confused....

Hi srhonda61,

Sorry to know about your husband prognostics.

“His PSA is 32, 10/10 cores positive, 60% on the right side and 20% on the left, Gleason is 3+4 (20% is 4). Perineural invasion on both sides.”

Ten years ago I confronted the same situation as yours (I was 50 years old) and the answers were very evasive. After all, prostate cancer is a science still in the ruts of “trial & error” and the best treatment is advised in basis of past experiences. Cure of PC is possible only if we get rid of it by surgery or burn it inside us. There is no known medicine for the cure of PCa. Otherwise, we all were cured and not in this forum.
In my case I had Radical Prostatectomy with no nerve spare. My cancer was not so aggressive (Gleason 2+3=5) and the PSA was high 22.4. The newer 3D IMRT machines were not available too. In those times HT was not a “golden” treatment if the intent was cure, but there is now information of extended survival cases were blockade of testosterone was the issue.

The concepts of treatments today are about the same, but the testing equipment and machinery delivering the treatment are now better assuring precision and accuracy, and giving an opportunity to consider a “going for it”. The practitioners should be carefully chosen. In a treatment with radiation I would take as a prime consideration the type, maker, spec, etc, of the equipment, and would procure the best no matter where it would took me to go or travel.

All treatments have side effects and to deal with them maybe the most important factor to consider from the beginning. I would prefer a sustainable Quality of Life then a Paraplegic Survival. Doctors surely have a tendency for applying the protocol they believe best, and those protocols follow guidelines published by trusted organizations (the ones were we get our knowledge).
It seems to me that in the case of your husband, Radiation Therapy maybe a better choice. However, I would recommend you to consult other specialists in the different fields of treatment so that you come into peace with yourself. Your doctor will surely give you letters of reference to such consultations, if you ask for them.

You probably know that a PCa is not a very fast cancer. Do not wait very long (4-6 months) but you have enough time to search and ponder before rushing to a decision.

Wishing your husband the best,
Baptista

 
Old 09-11-2010, 01:35 PM   #7
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Re: Getting a little confused....

Quote:
Originally Posted by srhonda61 View Post
Thanks, John. Can you please tell me what IMRT is? I wonder if this combination of therapies is practiced in Canada. I'd also like to know more about your cancer at the time you started this therapy. Do you know how many cores you had taken and how many and what percentage were positive? How about the size of prostate? Or if there was perineural invasion? Also, what was your Gleason score? All of this information is helpful to me, even though I realize that all cases are individual.

Looking forward to hearing back from you soon.

Rhonda

 
Old 09-11-2010, 01:43 PM   #8
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Re: Getting a little confused....

IMRT is Image Guided Radiation Therapy and is an accurrate way to deliver external radiation. It should be available in Canada.
I had a large 16mmX18mm tumor (2.5cm) that was a G4+3. Since I had a color doppler guided biopsy all three cores were positive. I previously had 13 biopsies, about 150 cores all negative. My psa had been steadily rising for 10 years from 4 to 40. My prostate was 60cc and after 3 months of Casodex and proscar was reduced to 32cc in order to have seeds implanted. Seeds work best with a small prostate. There was nerve involvement along with perineural nerve invasion.
JohnT

 
Old 09-11-2010, 10:03 PM   #9
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Re: Getting a little confused....

Thanks, John. I hope you have success with your treatment of choice for many years.

What's difficult about this is that our urologist, Dr. Klotz who is obviously right up there in his field, has stated without uncertaintly, that if there hasn't been any spread, Irv should absolutely, without hesitation, have a prostatectomy.

So, how does one go about questioning the advice of a professional of that caliber? Yet, here I am, wondering if there's a better way for Irv, rather than just jumping into surgery which could very well come with serious life altering and irreversible consequences? And which professional do you listen to? The urologist, the oncologist? It's tough...Oh if we could only have a crystal ball, all of us. I guess, sometimes not knowing might actually be better.

Today, September 13th is Irv's 51st birthday. Those of you who are following our situation, please send us positive thoughts for Irv's birthday. Let's hope that the monster hasn't spread and that we shall be guided by whatever powers there are above to the solution that is best for my love.

 
Old 09-12-2010, 02:10 PM   #10
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Re: Getting a little confused....

Quote:
Originally Posted by srhonda61 View Post
What's difficult about this is that our urologist, Dr. Klotz who is obviously right up there in his field, has stated without uncertaintly, that if there hasn't been any spread, Irv should absolutely, without hesitation, have a prostatectomy.


First of all, I do wish Irv a Happy Birthday, and wish you both the best in this challenging phase of the journey.


Regarding the quote I pulled, above...I would also say without uncertainty that IF there hasn't been any spread, without hesitation a prostatectomy would be an outstanding treatment choice.

However, I believe that it would be extremely difficult, or impossible, to say without uncertainty that there hasn't been any spread.

With so many positive biopsy cores present, this is one sign of widespread cancer within the prostate; and once widespread inside, then likely a greater chance that the margin of the capsule has been penetrated with some PC escaping.

I hope this explanation makes sense to you. Maybe the question for your doctor is why he feels such an extraordinarily high confidence that the cancer is fully contained...because if it absulutely, truely is, then I agree that surgery is a good choice. Otherwise, I agree with some of the other comments indicating that one of the radiation solutions might be more effective.

hope this helps

 
Old 09-13-2010, 02:09 PM   #11
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Re: Getting a little confused....

Any medical specialty managing prostate cancer will believe their modality is the only way for management. This is normal however some doctors over sell their modality and are critical of others.

Technology is rapidly changing radiation therapy. Imaging (MRI/CT) are improving constantly with no end of improvement in sight. Deliver of the radiation beam is improving the accuracy of the Prescribed Dose Volume to Target Volume. This allows increased dose which increases the cure rate. Surgery once the gold standard for management of localized PCa is now in second position to all forms of modern external beam radio therapy IMRT/Proton/CyberKnife. The most precise delivery is with the CyberKnife (Completed May 5, 2008 no lasting side effects) which also is the only system to automatically adjust the beam during treatment, excellent outcome to date; IMRT /IGRT in the hands of a good Radiation Oncology Team will also have excellent outcome. No surgical risk from external beam with cure rates equal to or better than surgery. If there are PCa cells in the prostate bed they also receive a dose of radiation which would be left behind with surgery. However no therapy is 100% effective or without risk. Understand the risk, cure rate and side effects for all options to allow an informed choice.


Happy Birthday and Best Of Luck to Your Husband!

Last edited by viperfred; 09-13-2010 at 02:09 PM.

 
Old 09-13-2010, 09:57 PM   #12
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Re: Getting a little confused....

Thank you, kcon and viperfred. I'm imagining that if I asked the urologist how he can be so sure there is not cancer outside his prostate, his answer would be that he can't be sure but with the advancement of Irv's cancer, we should get the prostate out to remove most of the cancer and then we can decide about radiation therapy afterwards.

In other words, I don't think whether he can be sure or not would change his mind about whether or not the prostate should be removed.

I think the best thing to do would be to insist upon seeing an oncologist before he goes for the surgery. That way we'll get a different perspective.

 
Old 09-13-2010, 10:15 PM   #13
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Re: Getting a little confused....

Agree 100%!

My first consult was with the surgeon who said the only way to remove the cancer is surgery. He did not mention the high rate of recurrence from surgery or risk from the procedure and surgical outcome. He did not advise that modern studies of IMRT radiation of 78-86.4 Gy total dose shows higher cure rates then most surgical studies, High dose Brachytherapy and the CyberKnife have very high cure rate. The CyberKnife data is limited but is tracking High Dose Brachytherapy worse case. Being an informed consumer is the best we can do for management of PCa.

Best Wishes
FredK

 
Old 09-13-2010, 10:33 PM   #14
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Re: Getting a little confused....

Thank you so much, Fred. I will definitely ask the oncologist about combination radiation therapy which I've heard twice now has a better outcome overall than surgery.

So, to clarify, have you heard this even in cases as advanced as Irv's?

 
Old 09-14-2010, 05:42 AM   #15
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Re: Getting a little confused....

Hi Rhonda,

I'm hoping Fred will answer too, but I'll reply as I think information is more credible when you get it from a number of sources.


Quote:
Originally Posted by srhonda61 View Post
Thank you so much, Fred. I will definitely ask the oncologist about combination radiation therapy which I've heard twice now has a better outcome overall than surgery.

So, to clarify, have you heard this even in cases as advanced as Irv's?
The research is quite clear that it's not a matter of being more effective "even in cases as advanced as Irv's," but rather being more effective especially in cases as advanced as Irv's.

The Prostate Cancer Results Study Group carefully looked at studies of patients undergoing various kinds of therapy and what their outcomes were. It's quite clear that radiation does better, in general, for cases with more advanced features.

However, having an expert doctor, whatever his specialty, is also important. Your husband's doctor is regarded as unusually expert, and he is also thoughtful and very sharp. I'm thinking he may be unenthusiastic about radiation because his greatest awareness of radiation research may have been back in the days when too low a radiation dose was typically given by external beam methods (also inadequately aimed back then), leading to modest success rates. That would have been back in the 1990s and perhaps early in this decade.

I hope the meeting today goes well for you both.

Take care,

Jim

 
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