Case Histories

[Updated May 19, 2012]

Cautions

. Although reading about others' experience is very helpful the reader should be aware of several limitations which may include: (1) the information should be regarded with caution in the case that they were written by the patients themselves when trying to decide among treatments as there is a human tendency to justify one's decisions. As a result it is common that prostate cancer patients support the treatment they chose over other treatments to an unreasonable degree (2) surgery takes effect immediately and also has the worst side effects immediately whereas radiation has relatively benign immediate side effects in the short term but over the following 24 months as the radiation kills the prostate cancer cells the side effects kick in (see [PMID: 19395191]. As a result accounts which describe the side effects of radiation immediately after treatment cannot be used in terms of understanding the long term impact. (3) the reliability of patient accounts may vary.

Collections

Terry Herbert's site gives experiences of over 700 prostate cancer patients covering all major treatment modalities sorted by PSA, Age, Gleason Score and Year of diagnosis. See: http://www.yananow.net/Experiences.html and also see [this table] which gives the Yananow case histories in order of the number of web links in each write up (as well as listing the links themselves) and the number of lines in each writeup as indicators of usefulness.
http://www.myprostate.eu site also lists many case histories.
A collection of 50 video interviews is available at DIPEx.org from the UK.

Phoenix5 has 28 case histories -- 11 from men, 11 from the woman's viewpoint and 6 from celebrities.

The Prostate Centre of the Princess Margaret Hospital in Toronto has 4 video interviews with patients who underwent different treatments: watchful waiting/active surveillance, radiation, surgery and hormone therapy.

PCA International has 6 videos by medical personnel and patients here.

Steve Kramer has provided one sentence summaries of some patients with advanced prostate cancer who participated in alt.support.cancer.prostate online group in this post.

Dr. Arnon Krongrad, a laprascopic surgeon, has 60 video testimonials on his site.

Experiences not in Collections

Case histories written by doctors can be found here: (1) In this 21 page article, Dr. Paul H. Lange, a Uro Oncologist, discusses his own prostate surgery: [link]. The article on Lange also has additional comments from Uro Oncologist Dr. Paul F. Schellhammer (papers) (video) (2) Urotoday has slides on 4 case studies [1] [2] [3] [4]. (3) This case study of a patient by a physician includes substantial useful material on assessment of options. (4) This case history that appeared in the December 11, 2008 New England Journal of Medicine together with comments by three experts: [link].

Some longer discussions of self experiences are available here:

• Surgery. (1) Mike Stuckey, a writer for MSNBC.com, "chronicles his journey from diagnosis through treatment as he learns more about the disease, his options and himself" in a particularly well written account: http://www.msnbc.msn.com/id/13154507. He had a robotic surgery performed. (2) Another extended account of a robotic surgery patient is at Kenn Fights Cancer blog. (3) Doug Scott, a Canadian, discusses his surgery and subsequent radiation and overcoming incontinence through a subsequent artificial urinary sphincter operation. (4) Joe C. has a lengthy account of his NY area surgery. He had Gleason 9 with bladder and lymph node involvement. (5) Jim H. of California has a set of blog entries on his experience with surgery and subsequent recovery. (6) In Virginia Laken's 2002 book "Making love again : hope for couples facing loss of sexual intimacy" she details her experience in dealing with her husband's prostate cancer and ED after open surgery. (7) "Two Men & Prostate Cancer," (1995) is a videotape produced by Science & Medicine Canada that is the story of two celebrities, General H. Norman Schwarzkopf and David Crichton and their battles with prostate cancer. Both had surgery. (8) Pages 9-13 of WRMAC US TOO May 2007 Newsletter discuss the experience of a Washington DC robotic surgery patient. (9) Amnon Ben Yehuda discusses his investigation that led him to robotic surgery in [link]


• Watchful Waiting. (1) On his web site http://www.prostatejourney.com/ and later on his blog http://aprostatejourney.blogspot.com/ Alan Newberry in Vancouver has chronicled his experience with prostate cancer including details of his diet. (2) Terry Herbert in South Africa, who is also the author of the yananow web site, has a site on Watchful Waiting detailing his own WW experience: here. (3) Ken Malik in San Francisco outlines his experience with WW here. It includes details of his diet. (4) Lawrence Bookbinder of California has written up his experience at his http://www.prostate-cancer-story.net site which has an extended account of his experience on one page and a second page of resources. (He also has a different site on his BPH experience.) (5) Donald Mehlig of California has a web site which includes a 30 page account of his experience with WW.


• Radiation. With surgery the worst point for side effects tends to be immediately after surgery but with radiation it can take as much as a couple of years to kill the cells so side effects can come on and worsen over time. Thus to the extent that radiation cases focus only on the immediate procedure and short time afterwards they could be misleading. Therefore cases 1, 2, 4 and 7 need to be read with that caveat in mind. (1) Steve Kramer gives a capsule summary of his experience of the radiation procedure itself here. (2) Paul has a blog devoted to his proton therapy at Loma Linda. (3) In his 2002 book entitled "Leadership" Rudi Giuliani (pictured below) discusses his decision process in choosing among treatment options. Giuliani is the former mayor of New York City. He is an advocate of cancer screening [link]. (4) There is an account of a brachytherapy patient taking up nearly half the 2005 book: Dattoli et al, "Surviving Prostate Cancer Without Surgery". (5) There is a discussion of Merv Griffin at [link] who died of prostate cancer at age 82. He had previously been treated with radiation. (6) A useful case study by a physician on a patient who underwent IMRT and hormone therapy is available [here]. One focus of this case was the use of MRI imaging. (7) Toshiba has a video on a pilot's experience with Proton Therapy at MD Anderson. Click on Hope in Houston at the site.
• High Frequency Intensity Ultasound. Paul Kinow. Paul also has a HIFU FAQ.
• Cryoablation. Mike Landess is an ABC News reporter in Denver who developed a 4-part TV news piece on his prostate cancer and his 3D mapping and focal cryoablation therapy. See [link] for all 4 videos and follow up video news.
• Advanced Cancer. (1) An account by Charles Maack appears on the Wichita, Kansas USToo site along with a number of observations on ADT and related topics organized into a series of articles. (2) Bill Minnick had multiple cancers in addition to prostate cancer. He underwent both RT and HT; however, the focus of his endcancernow.org web site is primarily his personal experience with a macrobiotic diet.