YANA - YOU ARE NOT ALONE NOW

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Gary C lives in Ontario, Canada. He was 56 when he was diagnosed in November, 2008. His initial PSA was 3.3 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.

You know the drill: when they tell you that you have the dreaded C, the earth falls away beneath you. I was first diagnosed in November 2008 after a needle biopsy. One core out of 15 showed cancer.

Both my younger brother and father have survived this ordeal. My brother (at 49) opted for the surgery and my dad ( at 75) for hormone and radiation.

So here are my stats: Gleason 6; at diagnosis PSA 3.3 up from 2.7 (PSA now back to 2.7); Doppler MRI ( done December 2008) showed nothing i.e. no observable mass; location : Transitional Zone .

The options that appeal to me are : WW (aka Active Surveillance) ; the surgery; or HIFU (which is available in Toronto at a cost of C$22,000. The first simply means a Damocles sword hanging above me with the inevitable need to do something; the second, well you know what that entails, but at least statistically means something close to a long term cure; and the third seems to me to be the least gruesome but has not been proven as effective (at least long term).

My doctor , who does both HIFU ( at the Toronto clinic where he is a partner) and surgery at the hospital, tells me that if I choose HIFU, he will do only one lobe....( I am not certain if that means that I will retain some function).

I am very undecided. The HIFU testimonials on this site certainly convince me that it is really no better in terms of recovery than surgery.

If anybody has any thoughts I sure would like to hear them..

Thanks.. and BTW, this is an extraordinary site and I thank the heavens that I stumbled upon it.

 

UPDATED

March 2009

 

I met my urologist Dr Neil Fleshner at Princess Margaret Toronto today and told him that I had elected to continue with WW/AS. If the cancer turned more aggressive, I would opt for the Da Vinci procedure. He seemed content with the choice.

Here in Toronto there are two Da Vinci machines but they were acquired about two years ago. The significance is that the surgeons here may not have acquired sufficient experience. That is not to say that the surgery they perform is below standard, but rather it seems intuitive that the more experience the surgeon had the better the chances of a better outcome.

The active surveillance requires PSA tests every three months with an annual needle biopsy (this November). In the meantime I have started a regime of vitamins, exercise, and taking it easier at work. I am confident that none of that will matter, but it empowers me in any event. I have also begun reading Servan-Schreiber's book Anti Cancer which is somewhat inspiring.

My brother, also a survivor who opted for the traditional radical surgery ( PSA rose from 4 to 9; Gleason 7 ; post op pathology found that the cancer had penetrated the capsule) five years ago, feels that I ought not to wait and that I should do the surgery now...I appreciate his concerns, but I have decided for now to watch and wait...will post my PSA scores when I get them....

Later: Latest PSA count is 2.4, down from the initial diagnosis of 3.3.

I don't know what to attribute this to, and I am not sure if this is even significant. If I had to attribute it to anything, it might be the exercise, diet ,and vitamin regime I have put myself on. I am 5 foot 11, and 165 lbs but very much out of shape. I have joined a gym and engaged a trainer to build stamina and abdominal strength in preparation for surgery if and when it comes down to that.

I have cut out red meat, white flour products including cereals, breads, sugars, potatoes, all oils except olive and canola and I have reduced intake of coffee. I am consuming more vegetables and green tea, The only animal protein I have is chicken and fish. When I shop for foods I look for Omega 3 based products.

My vitamin regime is D, D3, Omega 3 and Flaxseed Oil along with B and C.

Back to see my urologist in May.I have found a Dr. Patel in Orlando Florida who claims that he has done more Da Vinci surgery than anyone else. The cost is about $35,000 but I will cross that bridge when I come to it.

 

UPDATED

May 2009

 

 

May 28, 2009: Just received the results from the latest PSA test: down to 2.5 from 3.3 at diagnosis last year....in any event, my doctor has fixed August 24 2009 for my next biopsy...can't wait for that one. Hopefully the Gleason Score has stayed put and the cancer is not getting more aggressive.

In the meantime, I remain on my diet of vitamins ....doubt it does much good but who knows.... I will check in again in August...

 

UPDATED

September 2009

 

 

It just gets more confusing.

I had the needle biopsy (again) last month and another blood test...and what a joy that was. After what seemed to be an eternity of waiting, I met my doctor today. I was ready for the worst and was prepared to do the Da Vinci laparoscopic thing....here is what he told me: PSA has settled down at 2.4 and here is the funny thing: out of 12 cores, no cancer..."What?", I said! "Oh!, don't worry its there, its just that the needle biopsy didn't pick it up"...plenty of PIN (prostatic intraepithelial neoplasia) ( I think that's what they called it) i.e. pre cancerous cellular stuff, but no Gleason 6 this time around.

"Now what?", I asked..."We wait and test you again in January"....

So here is the new normal: I have cancer; it may be indolent; I am going to continue to watch and monitor...in the meantime, no red meat, lots of colours, increase in exercise, take lots of green tea extract, omega 3, saw palmetto, Vitamin D and E, and go on pretending that some of this nonsense works...but at least I can live in this world of make believe for now....its five minutes to midnight and the governor called...for now.... .

Gary

 

UPDATED

January 2010

 

 

So here is the latest statistic: PSA has settled at 2.4. I continue with the no red meat, multivitamin regime and struggle maintaining my exercise regime. The stress levels at work are high and I am often sleep deprived.

My doctor recommends a six month wait and then another PSA test and biopsy. I asked him how many times that gland can be poked and to my surprise he said that it can be often biopsied.

So I continue to stay the course. I have found however that my libido has started to lag. My girlfriend is very patient and blames my stress levels at work. I fear that this long running drama with prostate cancer is taking a psychological toll. I raised this with my doctor and he opined that every man approaches PCa differently. The ever constant fear that this seemingly indolent disease, at least for now, could suddenly ramp up (as it did in my brothers case) may be there in the background. I suppose I shouldn't self diagnose and maybe get some help.

By the way, there is an experimental program conducted by Dr. Trachtenberg here at the Princess Margaret Hospital in Toronto. Using a real time MRI guided probe, a surgeon uses a laser tipped probe which zaps the tumour only, not the entire gland. the advantage over HIFU is accuracy (imagine a stick in a marshmallow), i.e. the prostate movement is minimized. I am not a candidate for this because at the moment I have no discernible tumour...the cancer is there but has not massed yet..[I was unable to find any details of this program, but there is a reference to his work which involves photodynamic therapy].

So that's it from this end (so to speak). I wish all my Yana brothers a Happy New Year and best wishes. Terry u r a saint and thanks to you I have shared many an e-mail with other members.

Gary's e-mail address is: garycaplan@rogers.com