THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2016 SO THERE IS NO UPDATE.
I had no symptoms at all and on June 2, 2010 I attended G.P. for "Champix" to stop smoking. Since I had just turned 50 he suggested a range of general blood tests as well.
He called back three days later, and told me my PSA was 28.0 ng/ml. He did DRE (Digital Rectal Examination) and gave me a hospital notification. My PSA rose rapidly:
July 5, 2010 PSA 50,
August 10, 2010 PSA 49
The biopsy on August 18, 2010 was not good (12 of 12 needles aggressive GS 7) and although the Bone scan and the CT scan on August 26, 2010 showed a clear scan for the bones four Lymph nodes were of concern as was spread to the bladder.
I had the official diagnosis on September 8, 2010 then TURB (Trans Urethral Resection of the Bladder) September 10, 2010 (very happy to wake up with no catheter) Bladder Clear! Hooray (only good news I've had in last few months)
I had my first Lucrin [aka Lupron] three month depot on September 15, 2010 and on October 4, 2010, my PSA was 41.0
Hating treatment: Impotence + Hot Flushes = Depression + Anger. Getting help for that, Head still in turmoil, still haven't stopped smoking.
MY JOURNEY SO FAR.
Please note that the format of dates is not the US format. So a date of 2/6 10 is in fact June 2 2010 not February 6 2010
PSA COUNTS (ug/l)
02/06/10 - 28
05/07/10 - 50
10/ 8/10 - 49 (D.T. 2.802 Mths, ADT Commenced 15/9/10, LUCRIN 3 Mth.)
04/10/10 - 41
29/11/10 - 3.7 T= 0.7
26/01/11 - 1.2 T= 0.9
25/03/11 - 0.96
02/05/11 - 0.83 (Commence RTx 9/5/11, 74gy, 8 weeks)
03/08/11 - 0.10
24/08/11 - 0.08
15/10/11 - 0.07
08/12/11 - 0.04
23/01/12 - 0.04
07/03/12 - <0.03 (Qld Med. Labs P/L min.) T=0.2nmol/L, Free T=1.1pmol/L.
21/05/12 - 0.01 (Different Pathology Lab)
BIOPSY
12 out of 12,
2x 3+3 30,50%
6x 3+4 10,30,50,60,90,90%
4x 4+3 25,70,80,100%
Perineural Invasion Identified.
No Family History of PCa. No Symptoms, so no test until 50 (TOO LATE!!!!)
02/06/10 - Attended GP for general checkup at age 50.5. Got the callback 3 days later!!!!!
Biopsy at Mater Urology 18/8/10. Advised 23/8/10 "Results not good"………SO-
26/08/10 - Bone Scan (clear), CT Scan (1or 2 Para-aortic lymph nodes slightly enlarged,
Seminal Vesicle invasion, possible Bladder invasion
08/09/10 - Official Diagnoses (given by registrar) Gleason 3+4=7, Locally Advanced.
(Treatment Choices? "ADT+RTx or walk out the door") All other Questions answered
with "don't know, everyones different" No staging information at this point. Given the
APCC book. From that I put my staging at G3+4=7, T3b N1 M0
10/09/10 - Rigid Cytoscopy No Bladder Involvement, Left UO protruding, no lesions
15/09/10 - Commence ADT, No induction therapy.
11/10/10 - (finally) letter from urologist, Gleason 4+3=7, Significant Para-aortic adenopathy. Incurable. (still no staging)
05/11/10 - Having transferred for RTx treatment to Toowoomba,
Radiation Oncologists Report-Stage T4, High Risk, Still no TMN. Possibility raised of no lymph node involvement.
27/01/11 - CT scan. 'No change in size or volume of small para-aortic nodes' in the face of a falling PSA. (A Glimmer of Hope! May be confined to pelvic area!)
09/05/11 to 30/06/11-RTx, Minor bowel inconvenience, otherwise OK.
15/09/11 - Bone Density T=-1.5, Z=-0.92 (max) Diagnoses - Osteopaenia
30/01/12 - ADT Still going, Fatigue etc.
12/03/12 - Radiation Onc. Says I can stop ADT (18mths), But I have decided to continue on in the hope of a more durable remission.
30/05/12 - Bone Density -Femoral Neck lost 0.12%, Spine gained 5.5%??
02/06/12 - Intend to continue on ADT until the 2 year mark at least.
Continuing PSA Count
(Dd/Mm/Y)
21/05/12- 0.01
20/08/12-<0.01
27/11/12-<0.01, T=<0.5nmol. End ADT
8/03/13-<0.01, T=<0.5nmol.
8/06/13- 0.05, T= 7.6 nmol. Testo's Back! (So's PSA!) :-(
8/07/13- 0.08
8/08/13- 0.11
12/09/13- 0.16 D.T.= 2 Months
After 2 years and 3 months ADT, PSA's less than 0.05 for 12 months and<0.01 for 6 months, I finished ADT hoping for a reasonably durable remission, but alas that appears to not be the case! I'm still hoping it may plateau and level out. On the plus side, the mental fog I attribute to ADT. has lifted, I have come through RTx reasonably? well; bladder etc- Good, bowel etc- OK, Erectile etc- Poor (ADT didn't help!) and have been back at work. It looks like later this year (2013) or early next I will have to go back through staging again (MRI, Bone Scan etc) and see if anything shows up. It may be possible that its a case of "radiologists bounce" but from my study of Pubmed etc, 4 rises in a row make it fairly unlikely. That leaves a return to ADT about June next year, an option I would prefer not to be facing, but probably better than ignoring it and waiting for disaster.
Still, the grass looks better from this side, and I intend to keep this view a while yet!
Regards
Geoff
PSA's (Dates are dd/mm/yy)
21/10/13- 0.16.
5/12/13- 0.25.
23/ 1/14- 0.44.
25/ 3/14- 0.99.
24/ 4/14- 1.30
26/ 6/14- 3.0
29/ 8/14- 7.8 !!!!!!!!
18/ 9/14- 11
10/10/14- 9.5 Re-Commenced ADT (Firmagon) after test.
24/10/14- 3.9
7/11/14- 2.3
As can be seen, my PSA's continued to climb at an alarming rate(D.T 2+/- months) up until re-commencing ADT in October 14. I have commenced on Firmagon (Deglarix), a 3rd generation GnRH antagonist, which does not cause testosterone flare, and therefore requires no induction therapy.
Prior to this I managed to organise a Gallium 68 PSMA (Prostate Specific Membrane Antigen) PET/CT Scan (a new radioactive agent with an affinity for any PCa activity) in an attempt to identify just where the recurrence is coming from. I suspected para-aortic lymph nodes, which have been mentioned (and subsequently ruled unlikely to be involved) since diagnoses.
This suspicion was confirmed, with one node being identified as malignant, as well as other minor nodes in the hip and groin. What I did not expect was the discovery of PCa activity in 4 bone locations (right shoulder, 3 on spine) however these may not show up on a normal bone scan.
So, from here, I would like to see if it is possible to get EBRT to the malignant node, as well as a possible Radium 223 treatment for the bone mets. I am hoping this will delay the time to Androgen Independence, as with my PSA velocity I am unsure just how effective 2nd line therapies will be.
For now, it's a fact that Hormone Therapy is a permanent part of my life.
Geoff's e-mail address is: geoffbuttfield AT hotmail.com (replace "AT" with "@")
NOTE: Geoff has not updated his story for more than 15 months, so you may not receive any response from him.
