May 2017 IPCSG Meeting -
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http://ipcsg.org Click on the ‘Purchase DVDs” button. The DVD of each meeting is available by the next meeting date. They now include the slides.
Member Stories
Dan Salas is a 66 year old attorney in San Diego. He had a twelve-needle biopsy last June after
his PSA reached 8. There was a Gleason
3+3 score in 10% of a single core. In November
he was biopsied again, which gave 3+4 in 4% of a core with 36% 3+3, and two
other cores with some 3+3. His urologist
wanted him to choose surgery or radiation within three months.
His personal path of investigation brought
him to the IPCSG, and he was referred to Bernadette Greenwood of Desert Medical
Imaging to learn about options. She recommended
getting an MRI.
An MRI (with 3 Tesla magnet from Siemens,
said to be the best) at UCLA found no measurable cancer. Note that Gleason 6 tumors may not be
detected, and are generally not considered serious. Dr. Schwartzberg here in San Diego reviewed
the images and confirmed the conclusion.
He has a large prostate, of about 144
grams. He is unsure about next steps,
whether he should continue on active surveillance and just deal with the BPH,
get a new doctor, and so forth.
He recommends PSA monitoring, which worked
for him. He feels the MRI was very
valuable, and comforting about his situation.
Q: How is he dealing with the symptoms from
his large prostate? Flomax worked very
well for a number of years, but then stopped working. Now, Uroxatral is working for him. There are other similar drugs that are
approved for use with BPH. Daily use
Cialis is said to reduce the size of the prostate.
Comment:
Zinc and pumpkin seeds are said to help with BPH.
Q:
What about the Prolaris test? It
was done on Dan’s biopsy last June, and it was consistent with the Gleason
score (i.e., it predicted little danger of death within ten years).
Comment:
Avodart for 6-12 months can shrink the prostate. The new Mayo clinic in Phoenix is said to
resolve BPH urinary problems without side effects by surgery.
Comment:
One participant favors doing a yearly biopsy. (yeouch!
How about MRI instead?) The
participant also suggests surgery or proton beam treatment.
Q:
Frequency of his PSA tests? Every
four months.
Bill
Manning will soon be 65
years old, and is a videographer. His current
PSA is 7.7. He needs to urinate 1-2X per
night. He found out about his elevated
PSA as part of an insurance application in 2009, when his PSA was found to be
4.1. His application was refused, as he
was not considered a good risk. A retest
at Kaiser came out at about 6. So he
underwent a 12-core biopsy, and 5% of one core was 3+3. His stage was T1c (localized
early-stage disease of relatively low risk). Surgery was recommended, with radiation as an
alternative. His wife wanted him to
undergo surgery right away. He chose to
do some research. A support group at
Kaiser was helpful, but then he learned about the IPCSG, and has attended since
2009. He learned about Dr. Duke Bahn,
and got a Color Doppler ultrasound scan.
Dr. Bahn put him on active surveillance and rechecked in 6 months; Bill
was still fine.
Dr. Bahn in 2013 wanted a biopsy (His 1st
urologist said biopsy yearly; his 2nd said only needed after a change), since
it had been four years since the original biopsy. Color Doppler ultrasound showed a change this
time. So Bill agreed to a 7-core targeted
biopsy. All the cores appeared to be
negative. To get a second opinion, Bill
chose to send the cores to Kaiser! Even
they were surprised, since many of their patients insist on second opinions
elsewhere. But Bill reasoned that they
had the original samples from 2009 to compare.
They agreed the new biopsy was negative.
Bill has chronic prostatitis and BPH (65
grams in 2009; 89 grams in 2015). So his
PSA was climbing due to that. He’s been
told that his PSA would be normal if 7-9, based on the size of his prostate.
Bill got an MP-MRI scan done in 2015 by Dr.
Schwartzberg of Imaging Healthcare Specialists, and it showed negative
results. Dr. Schwartzberg said that active
surveillance was fully appropriate for him.
His PI-RADS score was 2 (which is relatively low).
Overall, he's “very low risk.” So no treatment of any kind is needed at this
time, and he has had none so far. He did
change his diet. Perhaps his first
biopsy was a false positive, and surgery could have been a terrible mistake. Another MRI is planned for this summer.
He feels the IPCSG has been a super-important
factor in his life. It’s too hard to
sort through what's on the internet.
It's more digestible in the presentations here. It really lowers the anxiety.
Q: How
is the size of the prostate measured?
Ultrasound or MRI.
Q:
Ever treated for prostatitis infection?
No.
Q:
Diet? Available by contacting him
after the meeting.
Q:
Ever follow up with his original surgeon about the lack of need for a
radical prostatectomy? No, but in 2009,
the apparently eagerness of the surgeon to operate on him disturbed both his
wife and him, so was a motivation to learn more before going back -- and he
never returned to that doctor.
Q:
Pharmaceuticals taken? No, but
tried Saw Palmetto with no effect. Now
trying Stinging Nettle root. Someone else
tried Super Beta Prostate, but didn't see a discernible effect.
Comment:
Treatment for chronic prostatitis should be 3 months of
antibiotics. Reply: Bill would be reluctant to take that much
antibiotics, since he doesn't have an obvious raging infection.
Comment from George Johnson: Take your wife with you when you meet with
doctors for discussions. She will hear
things you miss.
Jack Harrison, age 87, small manufacturing business owner in Rancho
Bernardo. Coming to IPCSG for 10 years.
Current status: PSA 2.9, Gleason = 9, Bone metastases in the
spine and ribs and hip. Taking Zytiga,
Lupron, Casodex and Metformin. Feeling
very good, with positive outlook.
His diagnosis came in 1990 from his general
practitioner's digital rectal exam. His PSA
was then measured at 20. Biopsy showed Gleason
= 6. Urologist recommended surgery. He studied options at the UCSD basement
library, interviewed a radiologist and another surgeon, then underwent surgery. Quick recovery, and resumed work -- but major
negative effect on his sex life.
Post-surgery, the Gleason actual score was found to be 9 (5+4) with
positive margins (i.e., bad news!). The
San Diego Tumor Board recommended radiation, and he had 6000 rads of EBRT, with
no real side effects. His insurance
company dropped him after those treatments.
In March 1993, his PSA was still only 0.15,
but it gradually rose. His doctors
didn't warn him about how serious it was that the PSA was rising.
In 1997, his PSA reached 8.9, and then he was
(belatedly) put on Lupron and Casodex, causing the PSA to return to
undetectable. He had all the usual side
effects of Lupron: Tough on bones, loss
of strength, slowing down, enlarged breasts, weight gain, and incontinence (in
combo with prior surgery).
He heard about intermittent treatment at an
early PCRI (Prostate Cancer Research Institute) meeting from Dr. Stephen Strum,
tried it for 8-10 years and felt better.
As the PSA went up, he would use the drugs, and go off when the PSA went
back down. No urologist he saw would
agree it was a good idea, but it worked for him. Regained some vitality.
In 2011-2014, his PSA was rising again, and
he started Leukine (for stimulating the immune system) with Cytoxan and
Lupron. In 2014, he had Provenge
treatment while continuing Lupron and Casodex.
In 2016, he started Zytiga with Lupron and Casodex. This year, he had focal IMRT on his spine,
which seems to have cleared up the mets there.
Has some loss of strength and is slowing down a bit. His current program involves a healthy diet,
exercise and walking with his wife, a good spiritual program and keeping active
and positive. Current PSA = 3. No pain.
He recommends reading and understanding the
Partin Tables before any surgery. That
would have ruled out surgery in his case, since he had a high Gleason, positive
margins and a high PSA. Unfortunately,
it wasn't known until after the surgery.
(Nowadays, MRI would give the needed information.) He regrets having done the surgery with the
limited info he had back then.
He recommends the PAACT magazine, which is
free and has very good information.
Q: Continued
taking Lupron with other medicines added?
He managed his own Lupron dose until 2006, intermittently, sometimes
being off it for a couple of years.
Since then, he has been on it continuously, even when other medications
were added.
Comment from George Johnson: Intermittent hormone therapy such as Jack
used has been used successfully by others, but is not suggested by any doctors
in San Diego that he is aware of. He
invited Bob Keck to share his 24-year experience: He Had surgery in 1992. After 4 years, his PSA started rising again.
Dr. Bob Liebowitz from L.A. came to speak to the IPCSG and talked about
intermittent hormone therapy. His
Gleason was 6 and his PSA was 21. Ever
since, he has intermittently used hormone therapy: first Lupron and Eulexin,
then Casodex and Avodart, and more recently with added Metformin. The Metformin greatly slows his PSA rise. Now his PSA cycling from 0.1 to 6 takes about
a year and a half, and then he goes back on the drugs. In contrast, Gene Van Vleet only succeeded in
taking a holiday from Casodex for 3 months.
George was successful for 4 years on Casodex intermittent use, but now
takes it continuously. He only took
Lupron once.
Q:
Jack’s doctor? Mark Scholz, of
Prostate Oncology Specialists, since 2006.
Comment:
When your energy is down, try some American Ginseng. (But Jack noted that it didn’t work for him.)
