Al
Savdie and Esther live in New York City, USA. He was 55 when he was diagnosed
on November 10, 2005. His initial PSA was 5.0 ng/ml, his Gleason Score was 3+3=6
and he was staged T1c. His treatment choice was HIFU. Here is his story:
A
REMINDER TO AL IN AUGUST 2008 BOUNCED SO THERE IS NO UPDATE -
BUT
HIS STORY IS STILL WORTH READING
My
urologist called me on the phone to tell me of the cancer. He led me to believe
that surgery was the next step (cause that's all he does). I went into a little
bit of a shock and went home, straight to my computer.
Up
comes about 11 choices for treatment. Still naive and innocent about the whole
subject, I start searching for a top notch doctor. Finally, landed one of the
top 5 in the country in NYC NYU hospital. Again, all he did was the surgery. Then
I understood, you must decide on the procedure and then look for a urologist experienced
in that particular procedure.
All
of a sudden, I found a procedure called HIFU, which is not performed in the USA
but has been almost all over the world for the last 10 years. I found out that
the machine was invented in France and the name is "Ablatherm". Then, by accident,
I find out that a similar machine is made right here in the USA called "Sonablate
500". The FDA has not yet approved this procedure "HIFU" in the States, but for
some reason they manufacture the machine (go figure).
I am now in the process of trying to shrink my prostate size,with a three month
shot of Lupron, Casodex, Proscar and saw palmetto, in order to qualify for the
HIFU. Then, I must decide which country to go to. I found out that Austria has
lots of experience with HIFU and have both machines available and are the least
expensive. The cost ranges from $10,000 to $25,000 for doctor and hospital fee
only, all other expenses, such as traveling, hotels etc. is extra.
My
problem right now is trying to raise the funds for this procedure, being its the
least invasive and has the least side effects. Also, I hope maybe soon they'll
have some clinical trials in the USA which I may be accepted for. Would love to
speak to anyone who has gone thru HIFU and I am willing to help anyone with PC
with any kind of information. Thank you
Trying
to treat my prostate with a three month shot of Lupron, Casodex, Proscar and saw
palmetto, in order to shrink the prostate and to qualify for HIFU, was successful
but I experienced every and all possible side effects from those drugs. It was
definitely not fun. After communicating and speaking literally to over twelve
urologists all over the world, I brought the choice down to two, it was either
going to Austria or Germany.
On Sunday of July 16,2006 flew to Heidelberg
Germany. On that Tuesday went thru a five hour procedure called HIFU with the
Sonoblate 500 machine. I went in the clinic at 8am in the morning and actually
walked out around 3pm that same day. I was able to walk to my hotel, which was
about 4 blocks, wearing a new type of catheter (a short plastic tube with a on
and off or open and shut button or switch). Went out to dinner in a wonderful
Italian restaurant that same evening. Ordered salad, spaghetti and German beer.
After about a ten day stay in Heidelberg, my wife and I returned home
to New York City. Had problems taking off the catheter for the next six weeks.
Things I found out, learned and definitely should know:
1. Make
sure to find a Urologist near your home, who is familiar with the HIFU procedure,
if that's the procedure you decide on, to give you after care and all follow ups.
2.
Learn about the different kinds of catheters available and their different pros
& cons.
3. Find out about the new Color Doppler available to detect cancer
cells instead of biopsies, which are too invasive.
4. What to include and
test for in all your future blood tests.
5. Green Laser versus drugs prior
to procedure.
6. Decide on sparing nerve procedure or not.
7. Research
BPH and Calcium in the prostate, not good for HIFU.
8. Definitely opt for
a short stay in a hospital versus a walk in and out clinic.
9. Look up
all clinical trials going on presently and try to enter & qualify (in the USA).
10.
Make sure you collect all your files, test results, all pictures from all your
physicians, and take control.
11. Check out all physicians, clinics, hospitals
and surrounding staff, before getting involved.
12. Cross all your T's
and dot all your I's, when it comes time for the big step. Make sure to have everything
faxed and emailed to you besides actual phone calls from overseas, with physicians
(urologist) their staff such as nurses, partners, anaesthesiologist, clinics and
hospitals. Go as far as wanting to know their names, even what they look like
(their pictures if possible). It is much more comfortable to recognize someone
than to search for them and guess.
13. Do the same thing with your itinerary
for your trip if you're coming from the USA. Airlines, the kind of plane, the
different stops, your seatings, time involved and more. Your transfers, your hotels,
the accommodations your distances from hotels to hospitals or clinics.
14.
Research all medicines prescribed before and after procedure. No questions are
too stupid to ask even if you think you are making a nuisance of yourself.
15.
And never stop researching anything that has to do with Cancer even afterwards,
try to keep up with all the latest progress. We are so lucky to have computers
an of course the internet at our fingers. There is no information to hard or to
difficult to get.
I am now addicted to vegetables, fruits (healthy foods)
and vitamins. I see my Urologist once every three months. I presently have a recurrence
of frequency and urgency of urination, which has something to do with my bladder,
I think. I keep in touch with many other HIFU patients all over the world. And
my research will never stop.
I am still willing to help anyone with any
questions or help they may need. I will call and help anyone anywhere in the world.
Please do not hesitate to get in touch with me. Good luck to all and may G-d bless.
Regards
to all
