Prostate cancer report for JimJimJimJim
Last updated 23 December 2021
Diagnosed in 2009 with a large, aggressive prostate cancer (mostly Gleason score 9) that was growing outside the prostate in two places.
I had 4 years of continuous hormone therapy:
• 8 months before radiation;
• 4 months during radiation; and
• 3 years after the end of radiation.
Hormone therapy is also called ADT (androgen deprivation therapy).
My radiation was high dose rate brachytherapy followed by 35 IMRT (RapidARC) sessions. This is sometimes called HDRbrachy boost, or simply brachy boost.
After 3 years of undetectable PSA, I took a break from hormone therapy.
This break lasted 2 years, but the PSA started rising again, so I am now on hormone therapy again.
12 years after diagnosis, my PSA is currently undetectable.
PSA (Prostate Specific Antigen) began rising in 2009 to a maximum of 7.7ug/L.
PSA level in itself is not significant, but sudden sustained rises may indicate cancer.
2 June 2009
A renal ultrasound revealed a pattern in the prostate "typical of a large cancer mass".
22 June 2009
12 biopsy samples were taken from all over the prostate under anaesthetic.
7 of the 12 samples contained cancer.
Under the microscope the haphazard nature of cells in the samples showed a very aggressive cancer (Gleason Score 9 on a scale of 1 to 10).
26 June 2009
Bone scan x-ray revealed no large metastases in the bones.
(Small cancers cannot be seen in bone scans.)
CT scan revealed that no lymph glands were significantly larger (as they would be with large cancers in them).
(Small cancers in lymph glands cannot be seen on a CT scan.)
24 July 2009
MRI scan revealed that the cancer had grown through the prostate wall in two places, including around the seminal vesicles, but not into any vital organs.
On various rating scales this means the cancer would be rated Locally Advanced, T3b, Stage III, Stage C, or Very High Risk.
Before treatment was started I consulted with three surgeons and two radiologists.
19 August 2009
Androgen Deprivation Treatment (ADT, hormone therapy) began.
ADT1 was recommended (Zoladex), but I chose ADT3 (Zoladex, Cosudex and Avodart).
ADT3 may be a little more brutal, but may help me last a little longer.
17 February 2010
PSA 0.02 ug/L - a level rated by practitioners as 'undetectable'.
This means that the androgen deprivation therapy had driven the cancer into remission.
23 February 2010
High Dose Rate (HDR) brachytherapy 3 x 6.5Gy.
Highly radioactive Iridium-192 was allowed to sit in various positions in the prostate for a few seconds at a time over 36 hours.
Unlike conventional brachytherapy, no seeds are left in the prostate.
15 March 2010
RapidArc IMRT/IGRT external beam radiotherapy (EBRT) - 23 daily sessions x 2Gy over 5 weeks.
(An X-ray machine rotated around me, focusing its beams on the prostate, guided by four gold seeds implanted in the prostate by the surgeon.)
9 August 2012
Ceased Avodart (Dutasteride) after encountering a study suggesting greater kidney cancer risk.
Resumed shortly after after finding that only 1 man in the study had developed kidney cancer.
2 May 2013
I am taking a break from hormone therapy. This will probably be the one and only break.
8 November 2013 - 7 May 2015
Testosterone 0.7 nmol/L, 1.7 , 2.3, 2.4, 3.1, 4.4, 5.1, 5.6, 4.4, 4.5, 5.6, 6.3, 5.8, 8.0, 8.1 nmol/L
At some time in this period (probably late 2014) I ceased Avodart (Dutasteride) after learning that it only had an effect during a short period while the testosterone recovered.
7 May 2015
PSA 0.021 - apparent recurrence. Two more monthly PSA rising tests confirmed recurrence.
6 June 2015
PSMA (Prostate Specific Membrane Antigen), Gallium-68 scan confirmed recurrence in the base of the prostate.
3 July 2015
I declined salvage radiation and salvage surgery.
I opted instead to continue with hormone therapy, this time on Firmagon (Degarelix) monthly.
23 December 2021
PSA less than 0.008 ug/L (undetectable)
Testosterone <0.5 nmol/L
The cancer is still in remission.
Radiation damage to the prostate (and nearby bladder and bowel) happens both immediately (acute) and over the next 1-3 years (late).
I am left with no residual problems of either acute or late damage (i.e. I am continent, no problems with bleeding.)
The very high risk means that the cancer will most likely return and spread.
The very low PSA achieved is a good sign that any return or spread has been delayed, perhaps for years.
My plan was to continue on ADT3 to make the delay as long as possible.
How am I?
I haven't ever experienced any symptoms of my cancer that I can notice - not even the classic symptoms of problems with urinary flow.
Except for reports from pathologists on scans, and blood tests or biopsy samples I would not know it was there.
So the only symptoms I am aware of are the side effects of the treatment.
The most intrusive of these is fatigue - easily overcome with an occasional extra nap.
For anyone who is still worried, I can best quote from the beginning of John Yaxley's (my surgeon) letter to John Feros (my lifelong friend and GP).
John Yaxley's style seems more suited to references:
"James is in excellent spirits with a strong urinary stream and no incontinence."
• Gleason score 9
• Positive cores 7/12 (58%) (6/6 x GS9 one side and 1/6 x GS7 other side)
• PSA rise of more than 2 in the year before diagnosis
• PSA doubling time of 8 months before treatment
• Renal ultrasound typical of large cancer mass
• MRI shows probable extra capsular extension at left midgland laterally
• MRI shows probable extra capsular extension at left base in midline surrounding seminal vesicles and ejaculatory ducts
• J-Pouch relationship to prostate makes operation too difficult, may complicate radiotherapy
• Prostate pulled from normal mid-line by previous surgery
• J-Pouch bulge has weakened small bowel walls - perhaps easily damaged, hard to repair
• Shape of abdominal cavity and over-stretched remaining small bowel may impede success of later needed repair surgery
• % Free PSA 11.1% at diagnosis (High risk if less than 15%)
• Radiotherapy used narrower margins than normal to avoid bowel damage. (Normally there is some radiation spread around the prostate, which may get a few cancer cells on their way out.)
Addendum on bones
Hormone therapy can thin the bones, making them easier to break, but that does not have to happen. The greatest part of the attack on the bones comes in the first year or two of hormone therapy. You monitor your bone strength by a bone mineral density test (BMD or DEXA scan). Your doctor may order this test when you start hormone therapy. Your local doctor can do this - a good idea because they can also measure and monitor blood test other bone-affecting things like vitamin D and calcium.
But you can help protect your bones yourself with exercise. Doesn't have to be massive. Because of my disability, I am limited to no more than 30 minutes walking on a good day. But I try to do this every single day I can. After the first 6 years of hormone therapy, my bones were significantly stronger than those of the young reference (an 18 year male). Most recently, after 12 years (December 2021) they were just above that 18 year male strength.
I have written more on hormone therapy and side-effects here:
Hormone therapy (ADT, Androgen Deprivation Therapy
And done a few short YouTube videos on bones here:
Bones in advanced prostate cancer