May 2017 IPCSG Meeting - Survivor Case Histories

May 2017 IPCSG Meeting -

DVD’s of our meetings are available in our library for $10ea. Refer to the index available in the library. They can also be purchased through our website: 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.)