FREQUENTLY ASKED QUESTIONS

1 What do you have?
2 How did you first notice it? (And why didn't you notice it earlier?)
3 Dude, this sounds bad – how can I make sure I don't have it?
4 How did you get prostate cancer?
5 What treatments are you getting?
6 How did you find out about all these treatments?
7 How will you know you're getting better?
8 So, like, what's your prognosis?

1. What do you have?
This July I was diagnosed with advanced (metastatic) prostate cancer. "Advanced" means it's spread outside the prostate capsule; "metastatic" means it's spread to distant sites (in this case, about 10 spots on my bones in various locations.)

My PSA score (prostate-specific antigen) at diagnosis was 183 (this is incredibly high – anything over 10 is a danger signal.). When I had a biopsy done, my Gleason scores were 8,8,8 and 9 (very high – meaning the cancer was very far advanced.)

About 90% of all prostate cancer is confined to the prostate capsule itself – there's not much blood or lymph circulating down there, so it tends to grow slowly.

Unfortunately, it turns out that the cancer I have has been growing undetected for about 15 years.

2. How did you notice you had it? (and why didn't you notice it earlier??)
The main test for prostate cancer is the PSA blood test. It's normally not given to anyone under 50 – but in my case the cancer has been growing since I was in my late 30s. So be forewarned, guys – if you're over 30, get your PSA test done!

I first noticed something was wrong when I started having orgasms where no sperm came out. (Nothing, nada, zilch.) Boy, did this get my attention!

Very quickly things started changing. It became very difficult to pee . I had to sit down to pee, it took a long time, and it felt really uncomfortable. I was also occasionally incontinent, and I couldn't predict when I would need to pee – when the urge came, I had to answer it immediately!

Then I started getting constipated – really, severely constipated. Even with gobbling prunes and laxatives all the time I could barely go. It wasn't until later that I found out this was probably due to hypercalcemia – my bones were sloughing off excess calcium because of the spread of the prostate cancer to the bone surface.

I also experienced a few incidences of "bone pain" – a very sharp pain from the cancer spots on my bone that would take a few minutes to subside. Not fun.

Right now, I'm almost completely asymptomatic, thanks to the hormone therapy I'm on. (this is a temporary fix – see #8 for details).

3.  Dude, this sounds bad – how can I make sure that I don’t have it?
Get your PSA test done immediately if you are over 30.  It's an easy and cheap test, your doctor will know what it is.

If you don't want to hassle with your doctor, you can order a test kit online for around $40.  You prick your finger at home, send it in, and get the results over the Internet – you don't have to talk to anyone.

Here's a link to one of the many sites that sells these –
http://www.homehealthtesting.com/prostate-cancer-tests.htm

The normal range is from 0 to 10.  Anything over 1, and you should read more about prostate health (you could have BPH or prostatitis, neither of which are cancer.)  If you have anything over 2, you should talk to your doctor.

4. How did you get prostate cancer?
Short answer: nobody knows.

Longer answer: it could have been the years of the high-fat, high-sugar, high-red meat diet that I ate when I was younger.  Those things are all known to contribute to the development of prostate problems, including cancer.

Or it could also have been my Dad's wild ideas about grooming our suburban lawn in Houston.  "We don't have to plant St. Augustine grass like everyone else – I just found out about Tif Dwarf grass, we'll only have to mow it once a month!"  This sounded like a great idea to me, as the weekly mowing of our yard in the 100-degree Houston summer was something I looked forward to about as much as a kick in the shin.

What I didn't know was that Tif Dwarf grass was a *very* high-maintenance grass for putting greens!  So in two months it was all dying, and our entire yard was covered with fast-growing weeds.  And every weekend for a couple of years, I was on herbicide detail.  This consisted of me sitting at a faucet with a bucket in one hand, and a jar of concentrated Phytar 560 herbicide in the other.  I'd pour two shot glasses of the Phytar 560 into the bucket while the water was running, and then go pour the bucket on a few square yards of dirt and weeds in the back yard.  While the water was filling up the bucket, the mixture would foam all over my hands and arms.

After I was diagnosed with prostate cancer, I found out that Phytar 560 had been used for years in Vietnam during Operation Ranch Hand.  It was called "Agent White", and was used to defoliate rice paddies.  (I can confirm that there were absolutely no rice paddies in our back yard.)  I don't know of any evidence linking Phytar 560 specifically to prostate cancer, but herbicides in general are widely linked to prostate cancer.

But to get back to the short answer about how I got prostate cancer: nobody knows.

5. What treatments are you getting?
in the US (conventional treatment and paid for by insurance) These are done at Lone Star Oncology in Austin, Texas:

In Germany (alternative treatment, not available in US and not paid for by my insurance) These are done at the PraxisKlinik Arno Thaller in Markt Berolzheim, Germany:

Vitamins and supplements (not paid for by insurance) Most of these were recommended by Dr Glen Lupenitz (nutritional oncologist at Lone Star Oncology) and Dr. Ralph Moss (of http://cancerdecisions.com/):

Alternative treatments in US (not paid for by insurance):

Dietary restrictions:

6.  How did you find out about all these treatments?
Tons of reading on the internet, and talking with everyone I knew about it.

The best overall source of info that I've found about how prostate cancer works and what the standard treatments is "A Primer on Prostate Cancer" by Steven Strum, an oncologist in LA.  There's lots of colored illustrations to make things clear.

The absolutely most critical discovery I made in my searching was the Moss Reports (thank you, Margaret!)  Dr. Ralph Moss has been researching the latest treatments for cancer for over 30 years – both conventional and alternative.  I ordered a 500-page report on prostate cancer (one of dozens of cancer reports available).  It summarized – *and* evaluated – all the conventional treatments available. And amazingly, it did the same for dozens of alternative treatments available, many of which I'd never heard of before.  He places these treatments into categories of "well researched", "status unclear" and "poorly researched", which made it easier to evaluate all the wild claims out on the internet.

Moss also evaluates the best foreign clinics that he's seen in his travels – in both Mexico and Northern Europe.

If you know anyone who's received a diagnosis of cancer, have them Google "Moss Reports".  You'll be doing them a big favor.

After reading the report, I had about a dozen good possibilities to explore – treatments, mostly in foreign clinics, that would do something for me beyond what the standard US therapy had to offer.  Then I booked a phone consultation with Dr. Moss (which I highly recommend!)  During the call he gave me information that led me to cancel a $50,000 procedure I had scheduled in Mexico (high-intensity focused ultrasound + dendritic cell therapy).  And he talked extensively about three therapies – Newcastle Disease Virus, Coley's Toxins and pancreatic enzymes – that he found the most promising.

With that information in hand, I knew that I wanted to check out two clinics in Germany – and I ended up choosing the PraxisKlinik Arno Thaller, where I'm now being treated.

7. How will you know you're getting better?
Every six months I'll get a bone scan, CT scan and bone density test. I've already have one of each so I have a baseline in place to compare it with. The next tests for each are in January and February.

I'm also getting my PSA tested every few weeks, which is the main marker for prostate cancer. Since very advanced prostate cancer sometimes doesn't produce PSA, I'm also having other markers checked regularly, including PAP.

8. So, like, what’s your prognosis?
If I hadn't received any treatment at all, I might have been out of here in less than a year.

With the hormone therapy I'm currently on (which is the only standard treatment in the US), I'm almost completely free of symptoms. (I can stand up when I pee – yea!!)  On its own, hormone therapy lasts from 1 to 4 years.  But then it stops working completely – the cancer finds a way around it.

What the hormone therapy has done for me is give me a window to find a way to uproot the cancer at its source.  That's what the treatments I'm receiving in Germany are aiming at.  I'll be watching the results of the treatments closely – with every available test that looks useful – and will evaluate the treatments every six months.

I intend to be around a long time!

– Nick West