Fred
B and R live in Alabama, USA. He was 56 when he was diagnosed on December 19,
2007. His initial PSA was 5.24 ng/ml, his Gleason Score was 3+3=6 and he was staged
T1c. His choice of treatment was Active Surveillance. Here is his story.
About
8 years ago I had a bout with kidney stones and urologist checked my PSA and it
was about 7. He did recheck in 6 mos and it was 8 so he had me do a biopsy. It
came back negative but he followed with PSA every six months. It was usually in
the 4-5 range. At the beginning of 2007 my PSA was 5.5 so he recommended another
biopsy. I said no and would keep watching. All the DRE (Digital Rectal Examinations)
had been fine, had no other symptoms. Next PSA was 5.24 and I said ok to biopsy
as I had run through my insurance co-pays so I figured why not. This time it came
back positive for PCa in one of 12 cores and 4% in that one.
I got the
call as I was halfway into a five hour drive on a business trip and I was going
to be gone for four days. I was not shocked or stunned as I had somewhat suspected
it with the PSA readings. Had to tell wife and kids on phone (would much rather
have been home). To top it off, my urologist was retiring at the end of the month.
I did see him prior to his retirement and we discussed treatment options which
were Da Vinci surgery, IMRT (Intensity Modulated Radiation Therapy), seeds (Brachytherapy),
and WW (Watchful Waiting). All docs I have met with have discouraged WW/Active
Surveillance because as a young (56 young?) man I should treat it aggressively.
At the time I dismissed WW as my first reaction was to have the damned thing out,
surgeon get ready here I come.
I then met with radiation doc and the Da
Vinci surgeon and read a lot more on the web. The surgeon said it was no problem
waiting 6 months to a year and while not necessary for the surgery, would like
me to lose some weight. I was interested in HRD Brachytherapy and had an appointment
with another group who said they did it, but when I got there found out they did
not do it for prostate. The doctor pushed the permanent seeds which I did not
want and was horrified when I said I was in no rush. Said it should be done in
6 months latest, scared my wife.
None of the treatments appeal to me too
many side effects and none are sure to get rid of it anyway. The treatments seems
like using a shotgun to kill a fly.
Just had a three month PSA and got
results 2/17 and it dropped to 4.9 with free PSA of 12%. Free was 12% last year
and 11.9% three years ago, so I figure things are not changing much.
I
am interested in the focal cryoablation (Cryotherapy) I have read about, but until
insurance covers it I will have to wait.
I figure I have had PCa several
years already( doctor says that was his thought as well) and it does not seem
to be going anywhere fast. At this point I am choosing Active Surveillance. I
will have PSA every three months with a DRE and will redo the biopsy in about
8 months. In the meantime I have reduced my red meat intake, added some supplements
such as Vitamin E and D, extra fish oil caps, more broccoli and am working on
losing some weight.
One last note. In reading these posts, many people
have remarked on the biopsy and it being painful or uncomfortable. I had my urologist
give me a sedative (Valium I think it was) and a local in the area. It was not
painful at all at most a little uncomfortable. I found out they generally do not
offer this, you have to ask for it.
As
my post says, I was Dx December of 2007. After reviewing the various treatments
and complications etc, I had decided on Active Surveillance. For the amount of
Pca I had, it the treatments available seemed like using an elephant gun to kill
a fly. My wife and kids were not happy with the decision, but reluctantly went
with it. I continued to research various options to be ready if I needed to do
something and also see what new options were on the horizon. I had read with great
interest the information from Dr.Onik regarding the male "lumpectomy". After finding
out that he did not take any insurance I ruled out the focal cryoablation he does.
I
figured I should let my urologist know of my decision to pursue Active Surveillance.
He was supportive but said he had a recommendation. Much to my surprise he recommended
a targeted focal cryoablation. He said that since I was comfortable with AS, and
the cancer volume was low and from the biopsies, contained in one area, it would
be something to consider. He said that while he could not guarantee that it would
fully kill all the cancer,(though from reading other stories no procedure can
do that) it would remove what is known now. I would then continue on my AS routine
to make sure it does not recur. It also leaves open all other options should it
recur It would be as he called AS with a kick. While he is an experienced cryosurgeon,
he has not done a focal so I would be his first for this. I do feel comfortable,
however, in his expertise in the area, so after talking with family, said I would
do it.
He
will only be freezing about 1/3 of one side of the prostate and will not come
close to any nerve bundles. He believes that the risk of ED is very small and
incontinence is even smaller. I will stay one night in the hospital (only because
I have sleep apnea and they always want to monitor after anesthesia). The good
part about this is if I can pass urine, he will remove the catheter before I leaves
the hospital.
All
in all this seems to be a good approach, one that I am comfortable with. It is
miniminally invasive, has much less of a chance of major side effects, the known
cancer is gone, all other options would still be available if needed later, and
my family is happy that something is being done.
He
will do the procedure on Monday May 5th. I will update again after.
Later:
I
had the focal cryoablation done yesterday, spent one night in the hospital and
just got home. The doctor ended up doing more than planned, instead of 1/3 of
one side it was most of one side. He had a temperature probe in the nerve bundle
on the side he was working on, and it never got below freezing. He was nowhere
near the one on the otherside. He told me that ED should not be a problem and
apparently it will not be. To my surprise (and delight), I woke up this mornng
with a full erection. The doc was very pleased when I told him, especially since
I have a catheter in.
Everything
else went fairly smooth and the only problem is the catheter. It is a pain, literally.
He had hoped to take it out today before I was released, but said it would have
to stay in a few more days. Hopefully it will be out Thursday (today is Tuesday).
He believes he got it all, however I will remain on Active Surveillance to be
sure.
I
hope this treatment does turn out to be sucessful, and not only for my sake. If
it is succesful, it offers a great option for early, minor PCa (if PCa can ever
be minor). It is less invasive than anything else and should have fewer side effects
than anything out there at the moment. I will update later, both on my PCa and
the side effects.
Later:
Well
its been a week post op. The catheter came out on Thursday so I only had three
days on that horrid device. Slept most of the night Thursday waking once to go.
Friday morning was constant trips to the bathroom and just had dribbles. Called
Doc and he gave me Flomax. This pretty much set everything right. I have only
woken up once one night since then. The area where the cryo needles were inserted(perineum)
is sore but is getting better. Scrotum had swollen big time and was black and
blue. The swelling has gone down and the color is fading.
I
had volunteered last year to do a Mothers Day brunch for my mens club. I spent
Friday and Saturday shopping and hauling the food. Sunday came and made a big
brunch for about 130 people, cheese grits, two types of eggs, lox and bagels,
biscuits, lots of fruit, and some cakes. I did have lots of volunteers in the
kitchen Sunday. It did wear me out however.
I
was back at work on Monday. Did not stay the whole day because after sitting for
a long period it was getting painful in the perineum area. Still have some small
urgency problems and urinate a little more frequently than before. This is also
getting back to normal though. ED is not a problem. Have been getting erections
though things are still sore from the catheter.
I
am looking forward to my next PSA in three months. Mine was somewhat high to begin
with so if it is lower, I will be happy.
It
has been several months since I last posted.
After
initial very good results from the focal, things went somewhat downhill. I had
no problem with erections for several months post procedure and then started having
problems. Also while again for several months post procedure, I had plenty of
ejaculate then all of a sudden none. Penis seemed to be quite a bit smaller for
awhile. No problem with incontinence.
Urologist
started me on Cialis 5 mg daily and that helped quite a bit. Back to normal size,
and while not as erect as previously, I can have penetration and both wife and
I enjoy it.
As
far as PCa, had a my PSA done in August and PSA had dropped to 3.5 and DRE was
fine. This was about what we both expected. Since I still had most of prostate,
I knew it was not going way down. The fact that it had dropped about 2 points
was encouraging.
Had
two PSA tests in December. I had just switched regular docs and new one had lab
work done and had included a PSA. That gave me a bit of scare since it showed
5.8, but since I did not know one was being done, I had not refrained from certain
activities known to raise PSA. I had my normal screening done the next week at
urologist and while it was higher, it was only 3.9. DRE was again normal. He and
I discussed this and will get another done in April. If it rises then I probably
will get another biopsy and go from there.
Will
update again after that one.
Good
luck and health to all,
Fred
.
Fred's
e-mail address is: fredtrav@gmail.com
