Since my late 20's I have watched my diet, taken vitamin supplements, including C, E, Beta Carotene, CoQ10, D, and Calcium, and hormones, DHEA, Pregnenolone, Saw Palmetto, and Throid, as well as, about 2000 units of Fish Oil a day. I do a physical exam two times a year, including a comprehensive blood work and even more frequent PS's for the past 10 years. My parents died of cardiovascular disease, so I have regularly scheduled stress echocardiograms (I am scheduled for a mitral valve surgery in August 2010). My usual PSA has been 2.2-2.4 until last 2005 when it went to 3 (did biopsy that was negative) and went up to 4.3 this year, did another biopsy which was positive. [Bob does not mention if he has any gland enlargement which might well be associated with this kind of change in low PSA levels - see PSA 101 for some basic PSA information]
I am 67 years old. I first confirmed the diagnosis with another lab and also did a Ploidy test which indicated "aggressive" cancer cells. After confirming the diagnosis I have read a couple books, visited many sites, including YANA, and determined I can easily become overloaded with information in this area. It seems there is surgery, watchful waiting, radiation, HIFU, and then everything from mother's milk to specific diets. [Bob omits one more of the conventional therapies - cryotherapy - see the full list at Choosing A Treatment]
I am considering the following and would appreciate input.
My Gleason Score is 6 (3+3),and a T1c classification. It appears the cancer is confined to the left lobe. It appears unifocal (only one specimen of 8 was found to be cancerous and less than 5% of that one, but I have to believe there is more where that came from. [This diagnosis certainly has most of the elements of or insignificant low risk disease - see the National Comprehensive Cancer Network® (NCCN) site and download a copy of the NCCN Clinical Practice Guidelines in Oncology™ for Prostate Cancer which is supplied free of charge to registered users. (Registration is simple and free of charge).]
I want to preserve my sexual potency as long as possible.
I am considering either Cyberknife® (short treatment, long history with other cancers, very few side effects reported) or Proton Therapy, which takes a considerable amount of time and I understand would preclude surgery at a later date which does not seem to be the case with Cyberknife. [All forms of radiation, whether photon like CyberKnife® - and CyberKnife® gives a much higher individual dose than most other forms of radiation or proton damages the structure of the gland and makes any surgery very difficult and complex with high incidences of side effects]
Relying on Cyberknife should allow me, if I have a recurrence, to permit additional treatments ranging from radiation to surgery. [Additional radiation would most likely be ruled out as generally speaking the radiation dose with CyberKnife® is higher than normal IMRT (Intensity Modulated Radiation Therapy)]
Stage 1 would be Cyberknife or Proton Therapy.
State 2 would be "watchful waiting". [All men who have conventional treatment enter a 'watchful waiting' regimen after treatment. PSA testing usually continues for the rest of their lives] I would have regular PSA's, DRE's, and a biopsy each or every other year. [I am not sure that a biopsy procedure is possible after radiation therapy] In this way I am hopeful, should there be a recurrence, I can catch it early enough that it is still contained within the prostate capsule and seek treatment.
I would appreciate any constructive criticism. The most helpful input would be anything research studies or personal experiences supporting WHY I should NOT take this approach? [People in Bob's position might give serious consideration to an Active Surveillance regimen initially - see ACTIVE SURVEILLANCE FOR FAVORABLE RISK PROSTATE CANCER: What Are The Results, and How Safe Is It? ]
Since beginning this journey, I have read scientific journals, reviewed Yana and other "personal" experience sites, consulted with two different oncologists, measured my prostate using a colored Doppler, as well as complete a Bone Scan and CT Scan. I have investigated every treatment I can find including on going clinical trials. I find myself changing direction as new information reveals itself. [Bob faces the dilemma of all diagnosed men - the lack of certainty and good information in any aspect of the disease.]
I considered Active Surveillance, but realize I am not temperamentally suited to "wait". I reviewed treatment "success" criteria and found many "definitions". After identifying treatment centers, I telephonically contacted them, i.e. Proton Therapy, Loma Linda; HIFU, Toronto Canada; Brachytherapy, Seattle Washington, etc. Since a major concern of mine is ED, I sought some form of treatment that would assure sexual potency, none exists.
I then began what I believe those who do have a choice have to ultimately do, make an "educated" and calculated risk decision. When I found out my prostate was 72cc's, HIFU is all but eliminated. I have sensitive bowels, so IMRT does not look like a good choice. I don't want surgery. Since cancer was only detected in one lobe I was tempted to treat just one lobe, but after reading, no longer feel this way. Therefore, I now eliminate the treatment I would have used, Focal Cryotherapy. As of today I am investigating the use of medications to shrink my prostate while retaining sexual potency.
At this point, Brachytherapy appears to be a good option.
I have spent a great deal of time better understanding what PCa is, how those diagnosed respond, treatment approaches, research reports, self reports, and the different personalities of various oncologists.
As reported earlier, from 2004-2009 my PSA's averaged 2.5., then jumped to 3's. I scheduled biopsies at that time which were negative. My PSA was 4.3 and retested 4.9 during 2010, and once again I was biopsied, this time revealing cancer (Gleason 6). Within past 2 weeks my PSA dropped to 2.9 without any intervention, suggesting BPH maybe be affecting it.
Trust me when I tell you I have read journals, evaluated outcome methodology, reviewed patient reports, spoken with several oncologists, and finally met with those representing various approaches. Some of these include:
Dr. Richard Lam (Prostate Oconology Specialists - Marina Del Rey CA)
Dr. Orvan --HIFU (Canada)
Dr. Peter Grimm - Brachytherapy (Seattle)
Dr. Don Fuller - Cyberknife (San Diego)
Dr. D.K. Bahn, Cryotherapy and Cryoablation
I now conclude that virtually any standard treatment will "cure" a Gleason 6 PCa, if you believe in cure. I also believe that anyone with a low grade cancer has to be very careful deciding if they should watch and wait or be treated. I believe too many "jump" for surgery because they are afraid and want "it" out, unnecessarily risking incontinence and ED, and with still no assurance of cure. No treatment can guarantee avoidance of ED or some level of incontinence, it is all about the "odds".
For those concerned with their sexual potency, it is important to recognize that even if major nerve bundles are avoided, if the cancer is near nerves, then damage will occur. With the advent of the Color Doppler scan, why have a urologist do "random" biopsies? A Color Doppler and MRI can give us an idea of location of cancer and "target" these. Nothing prevents anyone from taking samples elsewhere as well.
Although most oncologists discount the Ploidy Test, research says otherwise. Aneuploid cells indicate a more "aggressive" cancer.
After all my work, I now seriously consider AS because of making my sexual potency a priority, or if necessary, Cyberknife or targeted Cryoablation. Given my prostate size now measures 100cc's I am not a good candidate for certain treatments. I also have a sensitive rectum so IMRT may not be a good idea. I have met with two physicians who offer state of the art treatment in their respective areas.
Dr. Don Fuller. A confident and reportedly skilled "operator" evidencing impressive results. Real time targeting, imaging, so smaller margins required meaning less collateral damage. Consistent with latest research, CyberKnife provides high doses of radiation for a shorter duration than , say, Proton Therapy. Only 3 year data and since Dr. King is no longer doing this at Stanford, not sure how much long term data is coming soon. The treatment regimen is 2 weeks long from seed implantation, CT/MRI, through radiation treatment.
Dr. D.K. Bahn. A personable, no nonsense, and well qualified radiological oncologist. He impresses me more than anyone I have consulted regards PCa. He took the time to "teach" me how the Color Doppler worked and identified specific "black" dots that required additional biopsies (waiting for report).
As I see it now, one of the big problems new PCa diagnosed patients experience is a lack of understanding of what they need to know before proceeding. As an example, are you already impotent? Iif so you might want to be more aggressive. Are you in your 70's,? Age is highly correlated with ED post treatment. What about your significant other and his/her feelings? Again, low level cancers are successfully treated by all treatments. Results are only subject to statistical nuances.
I originally believe I should avoid radiation and considered HIFU. Turns out it was a waste of time given that my prostate size precludes me from this treatment. I considered Proton Therapy, but given my sensitive bowels do not want this area radiated. I considered surgery and realized it is overkill.
I have suffered from a congenital prolapsed mitral vavle and recently had surgery. Compared to treating PCa, it was a piece of cake; Best hospital, best surgeon, most advanced technology.
You may like to read the discussion on these views on the Health Boards site.
Later: I am at the end of one journey and beginning of the next.
I concluded my investigation by consulting with Dr. Don Fuller CyberKnife and Dr. Bahn, involved in numerous treatments. Relevant to this addition, Dr. Bahn, using a Color Doppler identified two "dark spots" on the left side of my prostate (where cancer had been discovered). He performed 7 more biopsies, "targeting" the dark spots and (for good measure) did four more of the right side (which had previously been negative). The lab reported all cores "benign".
Given that my initial diagnosis was Gleason 6 with 1/5 cores less than 5% cancerous, and now completing a total of 15 biopsies finding nothing more, I am significantly reassured. It also appears I do have prostatitis and my prostate is 100c, both of which explaining urinary difficulties and fluctuating PSA's.
I began this (initial) journey saying I am not temperamentally suited for watchful waiting. However, after better understanding research which shows that 70% of those who engage in AS (watchful waiting) never need treatment and the overwhelming majority of the remaining 30% who do need treatment find satisfactory treatments, it makes sense to preserve the quality of my life and not risk unintended consequences of any treatment.
I am committing myself to active surveillance which means I will complete a PSA every 3 months, have a Digital Rectal Exam every few months, do a Color Doppler a couple of times a year and maybe for the first two years do a few biopsies. I say this is end of one journey and beginning of another because at some later date, I may find my Gleason has changed and treatment becomes necessary. It is never really over.
Best to all.
When my diagnosis was confirmed by a second pathology report and determined to be a Gleason 6, I first felt I had to do something and could not bear "waiting".
However, after visiting this site and others, researching all available treatments and discussing my case with several oncologists, I decided to simply employ "watchful" waiting. Since then I have not seen a PSA reading over 2.9 and all DRE's are negative. I just had a color Doppler indicating no changes. I will next do a MRI at UCLA within the next few weeks to gain another perspective. But at the moment, all looks good.
Urine flow is good and my sex life unaffected (a major consideration). I have witnessed too many people rushing into treatment only to suffer the consequences, i.e. impotence, incontinence, etc., and suggest taking time before acting. Every day I am "fully functional" is a gift.
I will be 70 in September. During August 2010 I had a Mitro Valve Prolapse repair at Cleveland Clinic. It would be nice if identifying the problem and solution were as easy in the case of Prostate Cancer.
Since my diagnosis , it will be 2 years this June, I elected Active Surveillance. I have been monitored by Dr. Richard Lam of Prostate Oncology Specialists in Los Angeles. I began Avodart April 2011, in part because my prostate measured around 70cc and I wanted to reduce it, increasing the range of treatment options should I elect to have or require treatment in the future. Two things have occurred, which are related, my prostate now measures near 50cc and because of less mass my PSA is now between 1.8 and 2.0. Besides PSA's, DRE's, and the PCA3 urine test (often used in association with blood tests as another monitor), I have a Sonogram or Color Doppler every 6 months, have had one MRI with Spectroscopy at UCLA 9/11 and have scheduled another next month. I have not noticed nor has any examination revealed a change in my condition. I was diagnosed with a Gleason 6 and of the approximately 14 biopsies I have had to date, only one evidenced cancer and that was at less than 5%. So far so good.
I have a word of advice. I know several people who immediately has surgery and unfortunately, experienced increased PSA's shortly thereafter, suggesting return of cancer , maybe remnants left the prostate bed or some escaping during or after surgery. I believe we need to move slower. I have met with many oncologists and evaluated their treatments. None are without risk, as is AS. AS is not for everyone, especially those who have difficulty living with the thought that cancer is their uninvited guest.
Have employed active surveillance, since discovering my Grade 6 Cancer. Beginning April 2011 I began taking Avodart (which has been shown to slow growth of cancers). This is characterized by quarterly PSA's and DRE's, bi annual Color Sonograms, and about once a year a MRI with spectroscopy. It will be three years this June since diagnosis. As my thread reveals, I consulted with experts of leading therapies, discovered virtually all had same potential side effects, and after an in depth review of surgery patients, discovered that surgery appears to be unnecessarily risky and no better than active surveillance, and maybe arguably worse.
Continuing as described above (last update). Avodart has accomplished my goal of reducing the size of my prostate (which correlates to lower PSA's) from close to 100 down to high 50's cc (important because certain treatments cannot be performed on too large a prostate). I met with Dr. Wong, principle investigator of a study being conducted at City of Hope (Los Angeles). The new technology used in Europe and developed in Israel improves upon HIFU, and is called MR guided focused ultra sound. It permits "real time" targeting of areas to be treated with no radiation but high intensity sound waves. I elected not to participate in the study , in part because it required 16 biopsies before and 48 afterwards , which I believe creates unnecessary risks of infection and potentially spreading cancer. It is now 4 years almost to the day I was diagnosed and thus far Active Surveillance has worked for me. I scheduled 3-4 "targeted" biopsies later this year to see if my cancer has changed. There are a number of studies going on that are promising including utilizing our own bodies immune system to destroy cancers. A few more years and those diagnosed will have much less to worry about.
Began Avodart April 2011 and have decided to stop taking it and see what happens. This year I had two "targeted biopsies" with two negative results. With my PSA staying below 2.0, contrasting my past where it averaged in excess of 2.5 and spiked to over 4 (which is why I had the first set of biopsies in 2010) I have not seen a PSA over 2 for three years. I am engaged in watchful waiting.
After an unusual PSA (4.2) in 2010, biopsies were taken and pc discovered. Took another set of biopsies and could not find pc. After reviewing all treatment options and outcomes, decided active surveillance was best for me. Since that time have scheduled regular Doplar sonograms and occasional MRI Spectroscopy's. Began Avodart (for a prostate around 100cc) because wanted to reduce size of prostate in case treatment was necessary and this increased option (some treatments are not available if the prostate is over plus or minus 50 cc). Began Avodart April 2011 and ceased mid 2015. During this time my prostate size was reduced to around 65cc. The Doppler indicates no sign of pc and my most recent PSA was 2.8 in April 2016. I still visit with oncologist, now only once a year, to continue to monitor, in case of recurrence. All appears well at the moment.
I continue to get PSA's on a regular basis, at least three a year, hoping that nothing "sneaks up" on me. I have continued employing a Medical Oncologist, overseeing my case. I see him annually, primarily for a color Doppler and DRE. I did have an unusually high (for me) PSA (4.8), this year, but there was no indication of anything more than prostatitus, with my PSA returning to the 2's within a month. With this exception, I have enjoyed an uneventful almost 7 years.
If I have learned anything, besides cancer refocusing energy and altering priorities, is there are too many uninformed, but otherwise well-intentioned people, who only see a prostatectomy as a viable option. We now know that there are viable alternatives, including Active Surveillance. This is a "quality of life" decision. Keep in mind, that every treatment brings with it risk of incontinence and/or impotency. I found that many of the physicians I spoke with, had become "true believers" of their chosen method, and cannot help but allow their personal philosophy to dilute their objectivity. At the end of the day, it is a very personal and private decision that need not be hastily made.
Bob's e-mail address is: rbkahn5 AT gmail.com (replace "AT" with "@")