I started having an annual checkup, including a blood test, from the age of 50. My PSA bumped along at the 0.5 to 0.7 level for several years, then started slowly increasing, reaching 1.3 in 2011, 2.1 in 2012, 3.8 in 2013 and then 6.4 in August 2014. As it was within the reference range of 0.30 to 4.5 none of my GPs brought it up with me until the 2014 result. As I now know, it should have been raised when it started increasing, say at the 3.8 level or even the 2.1 level. A case maybe for an education program for GPs?
My GP referred me to a specialist surgeon, who we were able to see within 2 weeks. He didn't like the way the PSA was increasing rapidly, and to his DRE the prostate felt rough (my GP had also done a DRE, but had not mentioned any roughness, another indication GPs need more education). So he booked me in for a biopsy. I had the biopsy 2 weeks later in early September.
A week later we got the results. All 19 samples (he took more than normal in the area that had felt rough) tested positive and were graded 4+5. He recommended a CT scan of the abdomen and pelvis, and a full body bone scan, which I had later that week. We saw the specialist the next week and were told there was no indication from the scans that it had spread beyond the prostate. He recommended surgery.
Two weeks later I had my prostate (and surrounding nerves, seminal vesicals and lymph nodes) removed via robotic surgery (there had been a cancellation in his waiting list). It went so well that I was released from hospital after one night.
A week later we saw the surgeon again to get the catheter out (hate those things!) and hear about the surgery. There was cancer in all parts (left and right anterior and posterior, as well as apex and base) with 80% grading 4+5. It also extended to the margins as well as the right seminal vesical, but not the lymph nodes. He advised I wai til my next PSA test before decidning what to do next.
Next PSA test result on 19 November was 0.20 (it should have been undetectable). Saw the surgeon that day and he recommended adjuvant radiation to hopefully mop up any cancer, assuming it has only spread to nearby areas surrounding where prostate was. So I booked to see a radiation oncologist at RPA here in Sydney on 16 December.
PSA test on 10 December showed a slight increase to 0.22. Radiation oncologist booked me in for 34 half-strength treatments to start late January/early February 2015. Will have another PSA test mid-January to confirm doubling time and firm up treatment options.
Physical recovery has been rapid since surgery. Continence has shown steady improvement with regular pelvic floor exercises. ED has not improved. Tried Viagra, but all that gave me was bad heartburn for 4 hours and no erection!
After diagnosis, changed diet to exclude sugar, alcohol, coffee, dairy and red meat, increased consumption of cruciferous veggies, fish and good fats. Started upping vitamin D via 10,000IU per day (at 89 as at 30/10/14) on advice of dietician. There was a study in Norway in 2009 that found improved outcomes for men on ADT if they had higher Vitamin D levels due to its androgen lowering capability. She wants my level to be above 200, as it may help me when I start ADT (which I would say I am likely to do after radiation therapy).
Started taking a 400mg curcumin capsule per day. Also (separately) a 50mg zinc capsule per day. Drinking at least one glass of pomegranate juice per day. Also taking 3 glasses of soda bicarb/molasses per day. Add magnesium sulphate powder to green smoothie I have each day.
Despite all this I lost 4kg after the op and have not put it back on yet (was only 72kg pre-op and am 6' tall). Back to working out at the gym most days and training my basketball teams. Feeling fine both physically and mentally.
PSA rose to 0.25 on 12/1/15, then 0.35 on 17/2/15, so Rad Onc delayed start of IMRT so I could have a Ga68 PSMA PET scan on 23/2/15.
This confirmed PCa had spread to right SV bed, so started IMRT on 26/2/15 to SV bed and surrounding area. Had 68Gy over 34 days, finishing 16/4/15. No side effects apart from a small increase in urgency to pee, which soon went back to normal, and a bit of tiredness, which also went back to normal within a month.
PSA initially reduced to 0.30 on 20/4/15 and 0.25 on 20/5/15, then slowly rose to 0.27 on 26/6/15 and 0.28 on 14/7/15, so RO booked me in for another Ga68 scan on 22/7/15.
This showed IMRT had been successful in reducing PCa avidity in SV bed targeted, but new avidity in right obturator nodes just outside targeted area.
In August I started taking 20mg Simvastatin and 500mg Metformin daily (with intention to gradually increase Metformin to 2000mg) based on information from various forums and research papers.
PSA remained at 0.28 on 24/8/15 but then increased to 0.37 on 18/9/15, so RO booked me in for another Ga68 scan on 17/10/15.
This showed all PCa avidity in SV bed now gone, but increased avidity in obturator nodes. After discussion with an expert panel on the option of surgical removal of the nodes, which was decided against due to lack of success in previous cases, further IMRT was booked to start in January 2016 from obturator nodes (ie: just outside previous area) up to L4 on both right and left sides (the pelvic girdle area).
In October I added 100mg aspirin daily to the Simvastatin and have increased the Metformin to 1500mg in 500mg increments in September and December.
PSA had increased to 0.46 on 26/10/15, but then declined to 0.41 on 11/11/15 and then increased slightly to 0.42 on 8/12/15. Maybe the Simvastatin/Metformin/Aspirin combo is having an effect or it could just be variation in PSA results (I have read that it does jump around sometimes for no apparent reason).
I investigated the possibility of having lymph node surgery by becoming a case study for the Advanced Prostate Cancer Group at St Vincents Hospital on 27 November 2015. The surgeon on the Group said all of the lymphadectomies he had performed had been unsuccessful after 6 months. Even in Germany, where more extensive ones had been performed only 20% were successful. The Group recommended IMRT of all lymph nodes up to L$, with dose escalation around the right obdurator nodes.
Had IMRT from 14 January to 19 February 2016.
PSA dropped to 0.22 on 15 March, but then went up to 0.26 on 15 April, 0.59 on 16 May, then 0.77 on 14 June.
I saw my Med Onc on 24 June, and she said she was 90% sure that if we had another PSMA scan it would show another lymph node further up was avid. She recommended I start ADT.
I had my first 3 month depot of Lupron on 12 July.
On 15 September my PSA was 0.01.
I had my second shot of Lupron on 7 October.
On 19 December my PSA was 0.02.
I had my third shot of Lupron on 3 January 2017.
Geoff's e-mail address is: firstname.lastname@example.org