Resources

PROSTATE CANCER INFO SHEET  —   APRIL 2018

 

This sheet is a compilation of names, phone numbers, web sites that have been found to be useful to support group members.  Additions and modifications will be made to future editions as new information is acquired.

———-IMAGING———-

 COLOR DOPPLER — Dr. Duke Bahn in Ventura, CA (805-585-3082) is the recognized expert for this. Imaging with/without biopsy is available. Website www.pioa.org/meet-dr-duke-bahn.  This site also describes what Color Doppler can do.  Also, Prostate Oncology Specialists in Marina Del Rey, CA (310-827-7707) does an excellent job and is easy to reach. See PROSTATE ONCOLOGISTS below.

Color Doppler prostate specialty is not available locally. Also note that Color Doppler only covers the gland itself and the seminal vesicles.  The system uses a rectal ultrasound probe.

 

MRI  —  The new standard is called Multi-Parametric MRI (mpMRI).  Of MRI’s, mpMRI is prostate specific and gives the most information about the prostate.  There are not many facilities that do this. Locally, ColoradoCyberknife www.coloradocyberknife.com in Lafayette (303-926-9800) does the mpMRI. At this facility the MRI can be used with an ultrasound image to target suspicious spots on a biopsy. Unlike the Color Doppler, this MRI covers much of the pelvic area. A patient oriented overview of mpMRI can be found in  http://paact.help/adding-multiparametric-mri-to-prostate-cancer-screening-will-save-lives-and-money/.  A more technical description can be found in www.ncbi.nlm.nih.gov/pmc/articles/PMC4495493/.  NOTE: Since it requires a radiologist skilled in prostate readings to interpret, second opinions are recommended for MRI readings.

 

PET SCAN — New PET scan modalities, for detecting where the cancer is when it recurs after some form of treatment or when metastatic cancer is suspected, are excellent at detecting the lesions. A PET scan covers the whole body so can detect metastasis if the lesions are large enough. Of the currently established PET scans the best one may be Carbon-11 Acetate PET. Read about it in www.paact.help/update-c11-acetate-petct-in-prostate-cancer-fabio-almeida-md-2015/.   One center that does this is www.phxmi.com.  At this center results are immediate but the cost is high. The results of the Acetate PET are similar to Mayo Clinic’s C-11 Choline PET scan. Mayo has waived exclusivity so the scan may be available elsewhere.

New PET scans are emerging that target the PSMA (Prostate Specific Membrane Antigen). This is the current generation of scans and have limited availability and insurance coverage. They appear to be very accurate and detect small lesions. UCLA has this PET capability. Call its radiation department at 310-301-6800. You can find information on these scans appropriate to your current technical level about prostate cancer on the internet. However, one of my favorite sources is the www.prostatecancerinfolink.net listed in the ‘Links’ section on this USTOO site. Simply bring it up and use the “search” field.

Some PET scans are used almost exclusively to detect bone metastasis. The old one, available almost everywhere and almost universally prescribed, is the  technetium-99m scan. The doctors just call it the “bone scan”. The sensitivity and specificity is horrible. If it is determined you just need a bone scan ask for a script for an F18-sodium fluoride PET scan. Availability is at PETIMAGING, Wheat Ridge, 720-407-0444.

——–GENOMIC TESTS———

 Tests done on the genome structure of the cancer in your biopsy can be useful in determining how your cancer may progress.  There are four or more companies offering tests. Each is different and has different uses.  This is a complicated subject. A physician may recommend a test but the patient should be informed. One place to start www.zerocancer.org/learn/newly-diagnosed/genomic-testing/.  Dr.  Glode has a nice intro in a blog article “Improving Our Focus” in www.prost8blog.com.   You can get more current information by going to the www.prostatecancerinfolink.net and entering the string “genome test” in the search field.

——–PATHOLOGY——

 Unless your biopsy was read by the local expert, Scott Lucia or Ameripath Labs,

second opinions are always recommended for the biopsy pathology. Go to an expert. Locally, Scott Lucia at UCHealth (303-724-3470) or Jon  Epstein at Johns-Hopkins www.pathology.jhu.edu/department/services/secondopinion.cfm is recommended. Second opinions are usually covered by insurance.

——-IMMUNOTHERAPY——–

 Provenge (also known as sipuleucel-T) is the only immunotherapy that has been approved by the FDA for prostate cancer. It is usually only approved for the treatment of metastatic cancer that has failed all the standard treatments.  There is a lot going on in immunotherapy research however. To keep up, access www.prostatecancerinfolink.net and enter “immunotherapy” in the search field.

 

——–PROSTATE ONCOLOGISTS———

 It is hard to find one locally that specializes in the prostate.  Drs. Scholz and Lam at www.prostateoncology.com in Marina Del Rey, CA, are visited by many support group members.

They do Color Doppler, accept Medicare, and are easy to reach by bus from LAX.  One day trips are not uncommon.  Dr. Charles Myers in Virginia, previously on the preferred list, has retired.

An oncologist preferred by many in the support group is Dr.  Elizabeth Kessler , UCHealth at Anschutz,  www.uchealth.org/provider/elizabeth-kessler–/.  There may be prostate oncology specialists at local centers such as TUCC, 303-825-8822 but we have no knowledge of them.

 

———UCHEALTH 2nd OPINION CLINIC———

 UCHealth (Colorado Med School) has a second opinion clinic in which your case is reviewed by a committee of supposed prostate experts. The clinic has mixed reviews. Contact 720-848-0170.

 

———–NEWSLETTERS——–

 A good one is PCRInsights  www.pcri.org/insights-newsletter/.

Now available online only.  PAACT is very good. It has a regular column by Dr. Mark Moyad. www.paact.help/newsletter/.

Also the newsletter by our sponsoring organization, US TOO, which also has a Moyad  column. www.ustoo.org/Read-the-HotSheet-Newsletter.

Prostatepedia (formerly ProstateForum), by Dr. Myers, is very informative but it is not free – currently $55 for twelve issues e-mailed to you.  Subscribe thru www.prostatepedia.net.  However there is a free Prostatepedia weekly that comes to your e-mail. Sign up at

https://mailchi.mp/prostatepedia/conversations-about-prostate-cancer?ct=t(EMAIL_CAMPAIGN_4_19_2018)&goal=0_bc8795358a-f4208b5209-149094581&mc_cid=f4208b5209&mc_eid=a80328a84f

 

———INTERNET FORUMS———

 There are chat rooms, mail forums, and blogs that may prove valuable.

PPML is an e-mail chat forum in which people pose questions, and others, including doctors, answer on a very wide range of prostate cancer issues. www.ppml-info.org/.   It is very verbose with dozens of mails every day. You can ignore the ones you are not interested in. Periodically they list resource sites that are on the net.

A great site for summarizing and critiquing, in terms patients can understand, the most important recent papers on prostate cancer, is www.prostatecancerinfolink.net/.

Dr. Glode still posts in his excellent blog.  You can also review all previous posts   www.prost8blog.com.

 

———-CONFERENCES———-

 There is one main prostate conference everyone should attend once in their prostate cancer journey — the PCRI Conference held annually at the Airport Marriott in Los Angeles in early September. Go to www.PCRI.org and click on CONFERENCE.  DVDs of previous conferences are available.

 

———BOOKS——-

 Books about prostate cancer seem to appear regularly and many are quickly out of date because of rapidly advancing progress in prostate cancer. An older one that is durable for those deciding between radiation and surgery is “Invasion of the Prostate Snatchers” by Mark Scholz, a top prostate oncologist.  Recently published and a very readable overview by local urologist/oncologist Emilia Ripoll is “Prostate Cancer. A New Approach to Treatment and Healing.” Just announced and not yet reviewed by the support group is “The Key to Prostate Cancer”, edited by Mark Scholz, where 30 experts explain 15 stages of prostate cancer.  See Amazon for these books.

 

———-EMERGING TREATMENTS———

 Check out Nanoknife (irreversible electroporation). In Germany now. Investigational at some locations in America. www.prostata-center.de/index.php/en/

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Please advise if you find errors in the Info Sheet.  While we are trying to make this succinct, please offer suggestions for additions and/or improvements.