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Bob Kahn and Penny live in Nevada USA. He was 67 when he was diagnosed on June 28, 2010. His initial PSA was 4.3 ng/ml, his Gleason Score was 6 and he was staged T1c. He is undecided as to his choice of treatment. Here is his story.

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? ]

Thank you.

 

UPDATED

August 2010

 

 

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.

 

UPDATED

October 2010

 

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 jornals, 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 gaurantee 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 congential 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.

 

UPDATED

April 2011

 

 

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.

Bob's e-mail is rkahn4@cox.net