YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Paul Johnson and Jeanette live in California, USA. He was 61 when he was diagnosed in November 2005. His initial PSA was 8.8 ng/ml, his Gleason Score was 4+3=7 and he was staged T1c. His choice of treatment was Open prostatectomy. Here is his story.

July 1998 General Check-up no PSA test (54 years old)

September 18, 2001 General Check-up asked for test, PSA 3.7

September 9, 2005 general physical orders tests PSA and testosterone. DRE normal.

September 15, 2005 Urologist said PSA 8.8, need to schedule biopsy

October 13, 2005 prostate biopsy

October 28, 2005 date I was told the results of biopsy and my diagnosis: Gleason 4+3=7, "Multiple cores on left with at least 75% involvement or 2.0 cm., perineurial involvement on left." On right side, single focus of PCa 3+3, 1 mm. Prostate 15 gm. Stage T1c

November 14, 2005 met with initial urologist whom my wife and I did not like for his manner; offered surgery or radiation needed to do it soon

December 5, 2005 met with second urologist whom my wife liked and I did not; same answer as first urologist

December 21, 2005 met with third urologist we both liked, and stayed with; same options, but could wait a few months if we really wanted to, can fit to our schedule

Open RPP February 15, 2006. ("Mini laparoscopy" open surgery with one 3" incision)

March 14, 2006 surgical pathology report. Gleason 4+3=7 reconfirmed . Negative lymph nodes. Seminal vesicles and margins free of tumor. Stage T2cN0M0

March 21, 2006 Scan shows lymphocoele (lymph fluid collecting in abdominal cavity near/above site of surgery)

March 23, 2006 insert drain

March 27, 2006 drain stops working

March 28, 2006 flush it out.

April 2, 2006 ER to be admitted for IV anti-biotic treatment for suspected internal infection: tries to adjust my drain

April 4, 2006 new drain

April 17, 2006 laparoscopic drainage of pelvic lymphocoele. (surgery)

September 15, 2006 PSA test. Result undetectable...

January 12, 2007 PSA test --- undetectable

May 24, 2007 PSA comes back at 0.2

July 16, 2007 double open hernia repair (related to previous two surgeries?)

October 2, 2007 PSA 0.5 (doubled in less than 6 months)

November 14, 2007 bone scan neg

November 21, 2007 Testosterone, 447, PSA 0.5

November 27, 2007 CT scan neg

December 13, 2007 first Lupron injection (4+ month dose).

Friday, February 15, 2008 PSA test PSA less than 0.1. OK to proceed with SRT (salvage radiation therapy)

Tuesday, February 26 start of 34 fractions of 68 Gray total radiation

March 28 PSA less than 0.1, testosterone less than 20.

Friday, April 11, 2008 last day of SRT!

April 29th PSA undetectable, testosterone less than 20

May 29, 2008: PSA 0.2 (OOPS!), testosterone 504! DEXA bone scan OK

Wednesday, June 4, 2008, got second Lupron 4-month injection.

September 17, 2008, PSA undetectable

October 21st. PSA undetectable.

November 20 2008, ending my almost year of Lupron. GOOD NEWS. Lupron has worn off because testosterone back to average level and PSA is undetectable!

March 19th 2009 PSA test. PSA = 3.0

June 18, 2009 PSA test. PSA = 6.3

June 24th, 2009 CAT scan done neg

June 26th, 2009 bone scan neg

June 30th, 2009 write email to Urologist in which I agree to Lupron treatment

July 1, 2009 receive email reply to come in for injection.

July 7, 2009 Lupron 4 month injection

July 19th, 2009 first hot flashes noticed. Not very big but noticeable.

August 2009: Hot flashes stronger than a year ago, joint aches especially shoulders returns as it was initially with first year of Lupron in December 2008. Sleep disturbance returns which may be related to hot flashes and/or to joint aches. Have been taking ibuprofen at night which seems to help get to sleep/return to sleep.

August 17, 2009 email with Urologist from his perspective need no action other than every 4 months get new Lupron injection and every 4-6 months a PSA test. Concerned about perfunctory answer.

 

UPDATED

July 2010

 

 

After salvage radiation therapy in 2008 with ADT (Lupron) I had undetectable PSA for a few months. In mid 2009 it was clear I had biochemical recurrence again; the SRT had failed to zap all my cancer which was likely systemic at the time.

From mid 2009 to mid 2010 I again had ADT (Lupron mono-therapy) with my hope to be able to go on a "holiday" after one year. However, my PSA showed first 0.5 then in June 2010 0.8, even with the ADT and castrate level testosterone. I also changed my treating physician from a urologist to a medical oncologist.

I decided to follow the advice of my med onc to stay on Lupron mono-therapy for at least another three-four months and see what my PSA does. His perspective is that if the absolute PSA number stays very low, the current therapy is still working. If it continues to rise, then additional treatment can be added, such as an anti-androgen (Casodex) and possibly a 5-alpha-reductase inhibitor (Proscar, Adovart).

My med onc says there is no good published study that shows the increased effectiveness of adding the additional therapy. This is in spite of practically a holy crusade from many knowledgeable specialists and patients (see Internet discussion groups such as on Yahoo!) that "ADT2" and "ADT3" should be used for all....

We will see what happens with my September PSA test.

Paul's e-mail address is: paulj@cruzio.com