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Old 08-09-2010, 04:25 AM   #1
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Ten Years Surviving the Prostate Cancer

I was 50 years old when my doctor told me; “You have Prostate Cancer”. My first reaction was not to believe him.

Why should I have such a thing? I was feeling fine no pain and in good shape physically. In my mind, cancer was something of older people. However, after confirming the cancer through a 6-needle biopsy, I came to the terms that I should know what cancer was all about. I became eager for Information, red books and search the internet. It was a euphoric month of study, and it still continues.

My doctor diagnosed me as being on “Stage B”. Staging (A, B, C & D) is the first dedicated work of the urologist to define what to do next. This is done by intercalating the results of the various tests (PSA, DRI, MRI, X-Ray, Bone scan, Gleason Score, etc). These are then set into Partin Tables to verify probabilities of cancer location. Pinpoint the cancer spread is very important but unfortunately the existing equipments cannot detect tumors of very small size. Early stages cases are defined on doctor’s experience. If considered within the prostate gland (confined) or spread out at the pelvic area (extra prostatic extension), it will be called “localized” and several options are available for a planned treatment. If the cancer has spread to other parts of the body (metastasis), then the cancer is cared through a mixing of treatments including chemotherapy.

My case was considered Localized but no sure evidence that it was confined. The doctor asked me to choose from three treatment options; RP, EBRT and IRT. To do so, he gave me letters of recommendation so that I could obtain second opinions from other specialists of the different fields of treatment. I carefully prepared a list of questions (about 50 lines) and investigated about the hospital’s facilities too.
The aim was “cure” but in the case of prostate cancer, as of today, truly there is yet no method that can assure a total eradication of the cancer. All treatments are based on pass experiences of similar cases and the choice is taken to the one that presents higher possibility of better results. That also includes the possible side effects caused by each type of treatment. My way of thinking was “go on, do something to take the guy out of you or burn it and hope for the best”.

My wife and I, under my doctor’s guidance, choose Radical Prostatectomy without nerve spare, based on three considerations: (1) The side effects of all treatments were closely similar to each other; (2) There were indications that the cancer was still localized, and (3) To take out from my body the greatest bulk of cancerous cells (the prostate gland).

My PSA before operation was 22.4 ng/ml. The sextant biopsy indicated an Adenocarcinoma, well-differentiated, Gleason score 5 (2+3). The pathologist report after operation indicated a voluminous cancer tumor; negative seminal vesicles and negative pelvic lymph nodes (9); positive surgical margins and capsular penetration; Stage C1. In medical terms it is described as being “pT3apN0”.

My operation was done in August of 2000, just 3 months after receiving the first results of the PSA test. I stayed in the hospital 15 days (5 for the operation and 10 for recuperating until the catheter was taken out). Four weeks later, the PSA reached its lowest level indicating 0.18 ng/ml. This meant that there were still cancer cells in my body. My doctor’s standards of success were for a PSA reaching a value of 0.06 ng/ml (this value varies from 0.03 to 0.10 between institutions). In March of 2001 the PSA was at 0.42. I had entered into Clinical Failure. According to the opinion of my doctor and others that I consulted, I had what they term as Micro Metastasis.

At that particular occasion, I had entered into a stage where confusion and disagreements exist between the experts. Some give more importance to the quality of life of the patient and others opt for a more aggressive attack on the cancer. Salvage treatment (radiation with or without hormones) shall be applied, but doctors disagree on the timing and on the method. Again I visited various specialists from world’s high ranked institutions, and was recommended to do nothing “Watch and Wait”, until the PSA had gone up to a higher level or if any physical indication was observed (pain, etc).

From the year September 2000 to September 2006 the PSA kept growing on an average of doubling in 14 months, going from 0.18 to 3.55 ng/ml. Many researchers consider a PSA doubling in 6 months as very critical. Many others opt to start a salvage treatment as soon as the PSA reaches 0.40 to 1.00 ng/ml. The speed of growing PSA is correlated to the aggressiveness of the cancerous cells, meaning that a high Gleason score signals a higher speed of doubling. Mine was a low Gleason score of 5 (the lowest is 2+2=4, the highest is 10) well differentiated cancer, considered not very aggressive.

Along these 6 years period of observation, I did not experience any pain or other apparent symptoms. The side effects of the operation, like incontinence, did never exist, but very seldom I could have a sort of erection. I have conducted a normal life, and did not take any medication directed to the cancer. For other purposes I had a daily Aspirin (100mg) and a dose of Vitamin E and Selenium.

In November of 2006 my PSA was 3.80 ng/ml and my doctor sent me for Radiation treatment IMRT. This was done in a very modern clinic located close to my home. I considered that hospital because it had recently installed newer equipment. The machine was a reliable linear accelerator Varian 2100 CD with 3D cone beam capabilities. The radiologist and their staff were highly recommended in the medical world. The doctor was very friendly and discussed with me details of his planned “attack” to the pelvic area. In total he decided to perform a dosage of 68Gy in 37 fractions of 1.8Gy per day (except Sundays), with photons of 15MV.

The daily sections were very easy to take and become a kind of a routine. I would get to the clinic in the evening, dress a gown and lay face up on the machine’s stretcher while the beam head would move around me stopping here and there. All my movements were controlled by the staff in their computer screens. It would take approximately 10 minutes (1 to 3 minutes under radiation). I only experienced a sensation of burning on my fifths’ week of treatment. I felt a burning pain when urinating and the stool became much liquefied, although no skin burning marks. These side effects were treated with separate medicines during the three month post treatment, but apart from the stool that it is now more consistent and still does not show much shape on it, all physical symptoms have gone and I never experienced incontinence, up to now.

From 3.80 in November 2006 the PSA went down to 2.28 at the end of the treatment (January 2007), and from there in a continuous curve reached 0.05 ng/ml, in February of 2008. This was the lowest ever PSA I have seen and it made me very happy. I celebrated the fact with champagne. After all, if the treatment had not “killed” the cancer, at least it has given me 7 years of extended life because it put me back to the low levels of PSA of the year 2000.

According to some experts, a surge in the PSA after radiation treatment is not a means of recurrence of the cancer. The specialists take into consideration three consecutive readings of PSA to define what they name as “Nadir PSA” (PSA=0.0). Any number above this nadir indicates growth of the cancer and the value is then used for future decisions on the progress of any treatment.
In my case the Nadir PSA become PSA=0.26, in May 2009. From there it has grown on an average doubling speed of 8 months. In August of 2010 the PSA is at 0.79 ng/ml. My next visit to the doctor is to be in November of this year. That is when we think that the PSA will reach 1.00. The challenging is there for deciding on the next step.

During these ten years fighting the cancer, I have been trying to see the case as a hobby. Follow the most recent reports from researchers and results on trials (the internet has loads of information now). I kept doing my annual health checkups; MRI and Bone scan every two years, and the PSA every three months. With the exception of the PSA, all others have indicated to be negative for the disease. My family, friends and doctors have been very supportive in this survival. I become a retiree in 2009, and now I am enjoying my life to the maximum.

For those of you whom happen to be experiencing prostate cancer I wish you success. I will answer to any inquire you may have regarding details of my situation, and will be looking for any advice from you in regards to what I may expect in the future. Please send me an e-mail or reply to this forum.

Baptista

 
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Old 08-10-2010, 01:48 PM   #2
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Re: Ten Years Surviving the Prostate Cancer

Hi Baptista,

Welcome to the board! It is good to see another eleventh year survivor participating! Also, you have traveled the "road not taken" for me - debulking, and I have traveled the road you may be about to travel - hormonal therapy.

I'll excerpt a small portion of your post and insert some thoughts in green.


Quote:
Originally Posted by Baptista View Post
... My doctor’s standards of success were for a PSA reaching a value of 0.06 ng/ml (this value varies from 0.03 to 0.10 between institutions).

JIM HERE: Some brands of ultrasensitive tests are now available that are reliably accurate to <0.01. With special lab tinkering they can report to as low as .001 or .003, as I recall, but this is not practical in the routine clinical and lab setting. Ultrasensitive monitoring has been a key part of my case management. I' now at 0.02, several months into my third off-therapy vacation from intermittent triple hormonal therapy.

In March of 2001 the PSA was at 0.42. I had entered into Clinical Failure. According to the opinion of my doctor and others that I consulted, I had what they term as Micro Metastasis.

Your initial PSA of 22.4 was high, as you know, but mine was much higher - 113.6. With a Gleason of 4+3=7 (validated by an expert), with all biopsy cores positive - most 100%, with perineural invasion and Stage 3, but all scans including ProstaScint negative. All the doctors I consulted were convinced that I too had micromets. Still, I'm very fortunate that my cancer has behaved well, responding very nicely to hormonal blockade.

At that particular occasion, I had entered into a stage where confusion and disagreements exist between the experts. Some give more importance to the quality of life of the patient and others opt for a more aggressive attack on the cancer. Salvage treatment (radiation with or without hormones) shall be applied, but doctors disagree on the timing and on the method. Again I visited various specialists from world’s high ranked institutions, and was recommended to do nothing “Watch and Wait”, until the PSA had gone up to a higher level or if any physical indication was observed (pain, etc).

Unfortunately the real leaders in hormonal therapy do not hang out at the major institutions. For some reason, many of those institutions have been fairly blind to the benefits of hormonal therapy. I've been at this a long time now, and I've talked to some of those docs/researchers from a number of major institutions about hormonal therapy, but I still cannot figure out why that is so.

From the year September 2000 to September 2006 the PSA kept growing on an average of doubling in 14 months, going from 0.18 to 3.55 ng/ml. Many researchers consider a PSA doubling in 6 months as very critical. Many others opt to start a salvage treatment as soon as the PSA reaches 0.40 to 1.00 ng/ml.

I'm at a loss here as to how to broach this thought, but I sense that you take a pretty objective look at things, so I'll just ask: radiation is known to be less likely to succeed as salvage therapy when it is used after the PSA has exceeded 1.0. Was there a reason for holding back til your rose to 3.8, which you mention below?

...

In November of 2006 my PSA was 3.80 ng/ml and my doctor sent me for Radiation treatment IMRT. ...

From 3.80 in November 2006 the PSA went down to 2.28 at the end of the treatment (January 2007), and from there in a continuous curve reached 0.05 ng/ml, in February of 2008. This was the lowest ever PSA I have seen and it made me very happy. I celebrated the fact with champagne. After all, if the treatment had not “killed” the cancer, at least it has given me 7 years of extended life because it put me back to the low levels of PSA of the year 2000.

According to some experts, a surge in the PSA after radiation treatment is not a means of recurrence of the cancer. The specialists take into consideration three consecutive readings of PSA to define what they name as “Nadir PSA” (PSA=0.0). Any number above this nadir indicates growth of the cancer and the value is then used for future decisions on the progress of any treatment.

I'm not a radiation guy, though I chose that course and had two or three prep consults before deciding to rely solely on hormonal therapy. However, I have always been puzzled how you sort out the frequent PSA bounce (or bump) from a true rise above nadir. Any thoughts on that?

There are two books that do an outstanding job covering hormonal therapy. One is "A Primer on Prostate Cancer - The Empowered Patient's Guide," Strum/Pogliano, and the other is "Beating Prostate Cancer: Hormonal Therapy & Diet", Myers. I heartily recommend both to you.


In my case the Nadir PSA become PSA=0.26, in May 2009. From there it has grown on an average doubling speed of 8 months. In August of 2010 the PSA is at 0.79 ng/ml. My next visit to the doctor is to be in November of this year. That is when we think that the PSA will reach 1.00. The challenging is there for deciding on the next step.

Why is it considered more likely that the rise in PSA indicates a recurrence rather than a bounce? Both the timeframe and the amount of increase are within limits for the bounce that are commonly seen. For instance, the Primer has a page on the "PSA Bump" on page 103, and it reports the "Longest time to PSA Bump" as 84 months in a Seattle study, and 60 months in a Georgia study (with 20.4 months and 18 months as averages). Typical bumps were 1.1 and .4 in the two institutions, with maximum bumps of 16 and 15.8. I'm thinking that perhaps the upward trend in PSA is that tell-tale exponential pattern (my layman's view - no enrolled medical education); if so, is that enough to rule out a bounce?

Do you know about lifestyle tactics to help prevent or minimize a recurrence? I wrote an overview thread about them entitled "Nutrition & lifestyle tactics - books, resources and a quick summary," started back on 3/6/2008, but the one item I would especially like to highlight is quality pomegranate juice (8 oz daily) or extract. Check out the research on PubMed. In essence, men recurring after treatment in the study had a PSA doubling time of 15 months; after two years drinking the juice daily, the PSADT stretched to 54 months! Then, for men who remained on the regimen, it continued to extend to an average of 88 months! Follow-up studies are underway, including at least one by MD Anderson instead of UCLA (original research), and results are expected this year. Vitamin D3 (quality brand) also appears particularly important to our success.


During these ten years fighting the cancer, I have been trying to see the case as a hobby. Follow the most recent reports from researchers and results on trials (the internet has loads of information now). I kept doing my annual health checkups; MRI and Bone scan every two years, and the PSA every three months. With the exception of the PSA, all others have indicated to be negative for the disease.

I sure understand why you might want those MRI and bone scan results, but they are so rarely useful when the PSA is so low that the American Urological Association recommended in January 2009 that they no longer be used as routine staging tools unless there were special circumstances.

My family, friends and doctors have been very supportive in this survival. I become a retiree in 2009, and now I am enjoying my life to the maximum.

Amen to that! I retired several years ago, and, much as I liked my past work, retirement is lots better!

For those of you whom happen to be experiencing prostate cancer I wish you success. I will answer to any inquire you may have regarding details of my situation, and will be looking for any advice from you in regards to what I may expect in the future. Please send me an e-mail or reply to this forum.

Baptista

Hormonal blockade is typically a lot more effective and longer lasting that many doctors believe. Also, there are ways of countering all the side effects that are often quite effective, though not always. If you do have a recurrence rather than a bounce, be encouraged that modern hormonal therapy is likely to give you many years of good quality life. After first line therapy fails - if it does, second line hormonal therapy is available, and there are further lines of defense after that.

As you probably know, an enormous amount of research is underway, and it is very likely that great new drugs and new know-how will become available by the time that you might need it.

Take care,

Jim

 
Old 08-11-2010, 06:00 AM   #3
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Re: Ten Years Surviving the Prostate Cancer

Hi Jim,

Thanks for the comments on my cancer fighting chronicler. It is interesting to know that you too are a Fighter and have a long period of experience.
I just wonder if you are the person I recall reading long ago that was on an Intermittent Hormonal Therapy. Back then there was little information regarding hormonal treatment. Doctors seamed to use it more like as a way for prolonging life then as a “golden” treatment. However, the article I red let me curious on the intermittent method of application, to full the dependency of the cells feeding on testosterone.

Regarding “PSA bouncy” (or bump), I have discussed the matter with my doctor in 2009. We talked about the variations (bounce) patterns that PSA levels usually show after radiation therapy. He pointed out that a PSA=1.0 is his target for us to get back to the matter. I believe that in our next meeting in November we will check if the PSA curve (46 months) is showing a systemic progression or if it can be considered still on a bouncy fluctuation. Any judgments must consider that the radiation was a Salvage treatment (I have no prostate gland) so that the conclusions should include that of similar cases (very rare in the net).

Regardless the conclusion on PSA patterns, my next treatment will be the hormonal blockade. I am eager to get information regarding medicines, methods, and points of concern that a hormonal treatment encloses so that I could be prepared to discuss it with my doctor and to be in peace with myself.

I will try to get the books you recommend, not sure though if they are available here in Europe. I would appreciate if you could give me an insight of your experience. Though it might be improper to ask you in this forum, but I would like very much to know your cancer events chronology and its related effects on the PSA and on your life routine. I am surprised and happy to know that you gone from 113.6 to .02 ng/ml. (How old were you at the time?)

Sincerely, many thanks
Baptista

 
Old 08-12-2010, 02:33 AM   #4
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Re: Ten Years Surviving the Prostate Cancer

Hi Jim,
Back to you in this separate post to answer your questions on my case.

(1) Regarding the despise of major institutions in handling hormonal therapy as a golden treatment, I was informed in 2001 that these institutions follow protocols which, by denotation, were established by themselves (JH and SMKCC) to be followed worldwide. This is where smaller institutions take the lead and even are recommended by the big ones. The same fact was valid for the not so traditional therapies like the Cryo, HIFU and Natural Medicines, and even for the application of ProstaScint scan to locate cancer tumors.

(2) In regards to the delay in taking the salvage treatment, I recall the words from one specialist from the Cancer Institute, telling that Salvage radiation would show better results if taken before PSA reaches 1.2. This cut-off value was controversial. Many would insist in a value lower of 0.4. However, studies at the time shown that in terms of years of survival to death, little difference existed on a PSA 1.0 vz PSA 4.0. My doctor (USA) was an advocate of “Quality of Life is first”. Salvage radiation was so chosen for a latter stage application. I wanted to go through hormones therapy (Zoladex). The present doctor who sent me to radiation 4 years ago said that protocols have changed. It was recommended then an earlier (lower PSA) attack of salvage treatment.

(3) The bounce vz true rise of PSA theory is all based on researches of past data. Apparently there are as many cases (50%) of PSA curves with bounce and non-bounce. The outcome in regards to the number of years to death (survival) show to be equal for both; bouncing PSA and non-bouncing PSA.
At present I am again in a similar situation regarding the value of cut-off PSA to start the next treatment. Doctor says PSA=1.0 but I believe more in a PSA of 1.5. The difference is small and it would allow a longer (add 6 months) period to ascertain of true rise. Logically, with no prostate there is only a narrow possibility that few non cancerous cells are producing PSA. But the apparent 8 months doubling indicates an abnormal cell behavior, translating the case into a biochemical failure. Following the standards, the nadir PSA for the cut-off setting, is the third rise from the lowest level taken on 3-month intervals. My nadir was PSA=0.26 at the 29th month pos treatment. Therefore cut-off PSA = 1.0+0.26=1.26 (≅1.5)

(4) I have followed news on Natural Medicines and Dietary. Until five years ago I was living in Asia and doctors from the region knew lots about them and gave me loads of information. I also red reports on a study conducted at Porto University (Portugal) where they managed to separate a chemical compound from the tropical fruit Mangosteen (produced in tropical countries), claimed to be good to fight prostate cancer. I have taken any so it would not influence the natural variations of the PSA (my marker). According to many, some of those medicines act with similarly effects of the hormones. I would like to point out that I have changed the way I think in regards to “living with cancer”. Albeit I would like to use the word “cure”, I am more tempted to think of it as a chronic disease. In such setting I decided to maintain a reliable marker to control its progress. I believe in Natural medicines and have reserved them for a latter period of my “living”.

Sincerely, many thanks
Baptista

 
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