I initially went to the doctor because of a pain in my groin and erectile problems. A blood test December 2005 showed that I had a PSA level of 7.54. Then I went to an urologist and he wasn't happy at the results of my DRE (Digital Rectal Examination), so I had a further blood test in February 2006 my PSA was to 7.82. The urologist said go away and come back in months. Not being a very patient type of guy I sort the advice of another urologist privately. He examined me and said he could do a biopsy the following week, I didn't know at the time in visiting him that he was head of the local hospital urology department and also chief surgeon. The results of the biopsy came back positive 6 (3+3). Being only 57 years old, he recommended a Radical Prostatectomy. I had this in May 2006 Post op Gleason 7 (4+3) T3b.
The surgeon replaced the bladder valve with some kind of metal staple system and didn't touch the lymph nodes. Surgeon advised me to have EBRT (External Beam Radiation Treatment) as a precaution to pick up any dropped bits. Started six weeks of RT in Sept 2006. I didn't have much in the way of side effects during the RT. The only problem which I had at this time was a very weak bladder, I regularly had to stop the car on the road side for a pee.
After the RT the oncologist sent me for a Bone scan and CAT scan - these proved to be all clear. The metal staples show up on the CAT scan. Strange thing is I was never offered these prior to the RP. I did however have a CAT scan prior to starting the RT, this is so they could compare the before and after.
These are my PSA results for the past 3 and bit years
June 2006 PSA 0.01 ng/ml one month after op
Dec 2006 PSA 0.00
May 2007 PSA 0.00
Nov 2007 PSA 0.00
May 2008 PSA 0.00
Aug 2008 PSA 0.01 after operation on bladder stone
Jan 2009 PSA 0.01
June 2009 PSA 0.02
Sep 2009 PSA 0.03 after operation on bladder stone
Jan 2010 PSA 0.06
My blood tests were all taken in Italy and here they seem to be a bit precise with their measurements, but I understand they are bit meaningless below 0.1. [The issue of the accuracy of ultra-sensitive PSA are discussed here.] Therefore the fact they are rising I'm taking these readings as being no cause for concern.
My condition was complicated in that I have a recurring bladder stone the size of a golf ball. This was the main reason I went to see the doctor in the first place, which uncovered the prostate cancer, which the doctor missed until 2 years later. They never even picked up on this during the CAT scan and in hindsight it's clear to see. I went to my doctors in May 2008 because I was passing blood, peeing was always a difficulty. An ultrasound scan showed up the stone. I had the first one removed July 2008. They blast this away with an impact gun; I only had an epidural for this and could see it all on the TV screen. The epidural injection was the most painful thing that have ever experienced.
This stone recurred a year later and I had it removed again, but this time I never felt a thing when I had the epidural injection. The surgeon also used a laser to try and remove some of the scar tissue from the neck of my bladder hoping to allow me to pee more freely. This scar tissue is a result of prostatectomy operation. It only worked for two months and I'm now dribbling again. I'm convinced that the stone has returned I'll no doubt be needing another op some time soon.
I always seem to have this aching feely in my groin; it would be nice to know if this is from the EBRT (External Beam Radiation Treatment), RP (Radical Prostatectomy), prostate cancer or the stone.
In May 2010 I had a ecographia to see if my bladder stone had returned and there is no sign of it, good news for once.
July 2010 latest blood test shows my PSA has had another 3 fold increase to 0.18 ng/ml.
December 2010 Changed diet no red meat and non-dairy
January 2011 Bladder stone 1 cm, too small to be of concern.
February 2011 PSA 0.27.
[In an update, Stu wrote:]
Things are getting a little worse in that my PSA has reached the dizzy heights of 0.94, and the doc started me on Casodex two weeks ago. First treatment in more than 6 years, which can't be too bad.
January 2013
Urologist gave me an ultrasound examination, which showd no signs of a bladder stone. He also did a DRE and suggested that I have a bone scan, which was also clear. Had a PET scan which shows a possible growth of 5 mm in my prostate bed. But there is no evidence of signs of cancer to be seen in the rest oof my body, which has to be great news. At least I can still continue with the vino.
February 2013.
Discussed the scan results with my Urologist and after another DRE he confirmed the evidence of the tumour. He prescribed Caosdex 150mg taken on alternative days for 2 months then have another PSA test. He didn't believe any stronger treatment was necessary at the moment..
May 2013
PSA dropped to 0.14. Urologist reckons that I should stay on Casodex fro another 3 months, but reduced to taking 50mg daily.
July 2013
PSA now at 0.12 still on Casodex 50mg. My Urologist suggests that I keep on them fro a while longer.
October 2013
PSA risen slightly to 0.15 still on Casodex 50mg and to remain so for at least another 4 months, at the advice of the Urologist. To spoke to him about my man boobs and he said that there was nothing that can be done. A small price to pay in other words.
February 2014
PSA risen again to 0.18 still on Casodex 50mg. Had my Testostreone checked for the first time, more out of curiosity 6.4 ng/ml (22.2 n/mol). I complained agian to my Urologist about the size of my BOOBS, as he said in October they wouldn't get any larger, but they have. He suggested that I could take a 3 month break from the Casodex and see what happens. I've decided to do this, but to complete the supply of tables that I currently have, which is another 2 months worth.
Last Summer I was on holiday in France and lying by the side of the swimming pool, it was bloody embarrassing when my boobs, were bigger than the 6 ladies also lying around the pool, and now they are even larger, so I guess there won't be any trips this Summer involving swimming pools.
May 2014 Blood test PSA 0.21. Deciced to stop Casodex to see if man boobs will reduce in size.
June 2014 Blood test PSA 0.58 doubled in a month, terrible news. Decided to restart Casodex. Testosterone 4.5 ng/ml
july 2014 went down the path of having a Mastectomy, with all the scans and tests that followed, no troubles were found. As this was classed as a non-urgent operation I'm still waiting (June 2015)
Sept 2014. Had a colonoscopy all clear.
October 2014 Blood test PSA 0.28 Ng/ml Casodex is still working. Testosterone 22.4 pg/ml.
December 2014 Changed Urologist, he recommended switching to Prostap. Had a 3 monthly injection. Also had a PSA test as a reference 0.29 ng/ml.
Febuary 2015 Blood test 0.14 ng/ml Testosterone 0.1 ng/ml. Prostap appears to be doing it's job. However having a lot more hot flushes than I had with Casodex.
29th May 2015.
Full blood test. PSA 0.09ng/ml. Lowest ever since started to climb 5 years ago. Testosterone 0.1 ng/ml
11th Sept 2015
Full blood test PSA 0.16 ng/ml
11th Dec 2015
Flood blood test PSA 0.39 ng/ml Testosterone 0.9 pg/ml. Mentioned to urologist that I was having a bit of trouble peeing. He tried to insert a catheter, which wasn't possible and very painful. He recommended a stricture operation, booked for 11th Jan 2016. 3 monthly Prostap injection.
19th Feb 2016
Underwent stricture op on the 11th as planned. Full blood test PSA 0.41 ng/ml. Testosterone 0.3 ng/ml
5th March 2016
Met with urologist as I can't control my urine flow. Had 3 monthly Prostap injection.
Lot more to follow, getting bit b with this update.
it's been so long since an update and a lot has happened.
I'll start by listing my latest PSA
11th Dec 2015 PSA 0.39 Prostap
19th Feb 2016 PSA 0.41
1st April 2016 PSA 0.69
27th May 2016 PSA 1.26
11th July 2016 PSA 1.34
26th Aug 2016 PSA 1.33
16th Nov 2016 PSA 2.12 Changed from Prostap to Decapeptyl 3 monthly injections
9th Feb 2017 PSA 2.97
14th April 2017 PSA 3.49 stared on Zytinga continued with Decapeptyl 3 monthly
4th May 2017 PSA 2.22 testosterone 0.2
1st June 2017 PSA 1.86 T 0.3
30th June 2017 PSA 2.56 T 0.1
31st July 2017 PSA 2.97 T <0.1
30th Aug 2017 PSA 3.68 T <0.1
28th Sept 2017 PSA 5.42 Zytinga not working stop taking it
Dec 2016 PET scan showed possible spread to lymph node at base of spine
Feb 2017 CAT scan would not find any issues
April 2017 had a double mastectomy
Sept 2017 PET scan confirmed spread to lymph node from last Dec scan and spread to a 2nd lymph node both at the base of the spine.
24th Nov 2017. Started 5 sessions of RT on 3 lymph nodes on my spine 40Gy in total 8Gy per day.
9th Dec 2017 Blood test PSA 8.34 ng/ml T 0.03
12th Dec 2017. Continuing with Zytiga with Deltacortene and Decapeptyl
4th Jan 2018. Blood test PSA 4.81 ng/ml
3rd Feb 2018. Blood test PSA 3.00 ng/ml
10th Mar 2018 Blood test PSA 2.05 ng/ml
6th April 2018. Blood test PSA 2.53 ng/ml
11th May 2018. Blood test PSA 2.96 ng/ml
6th June 2018. PET scan showed 3 tumor lymph nodes on spine gone but a new one on my neck
8th June 2018. Blood test PSA 4.31 ng/ml
25th June 2018 Changed from Zytiga to Xtandi
24th July 2018. Blood test PSA 3.45 ng/ml
4th Sept 2018 Blood test PSA 5.36 ng/ml
13th Sept 2018 Hospital not sure how to handle the tumor in a lymph node in my neck
28th Sept 2018 Had PET/FGD scan this showed pretty much the same as scan in June
13th Oct 2018 Blood test PSA 8.38 ng/ml
26th Oct 2018 Started 5 sessions of RT on the tumor in my neck 7Gy per day. Pretty scary face mask was very tight could only just breathe through my mouth each session 15 minutes.
14th Nov 2018 Continuing with Xtandi and Decapeptyl
7th Dec 2018 Blood test PSA 4.41 ng/ ml T 0.01
12th Dec 2018 continuing to take Enzalutmide daily and Decapeptel injection 3 monthly
26th Jan 2019 PSA 2.06 Testosterone 0.2ng/ml
6th March 2019 PSA 2.54ng/ ml Testosterone 0.1ng/ml
30th March 2019 PSA 2.42 ng/ml Testosterone 0.3 ng/ ml continuing with Enzalutamide and Decapeptyl
11th May 2019 PSA 4.21 ng/ml
7th June 2019 PSA 3.91 ng/ml Testosterone 0.4 ng/ml
4th July 2019 PSA 4.8 ng/ml
10th July 2019 PET scan showed metastatis in hip, rib and secrum
2nd Aug 2019 PSA 7.01 ng/ml Testosterone 0.2ng/ml
7th Aug 2019 Oncologist confirmed Enzalutmide had stopped working and recommended starting 6 sessions of chemotherapy Taxotere 100mg plus daily Prednisone 10mg per day. And to continue with Decapeptyl injection 3 monthly
16th Aug 2019 PSA 9.66 ng/ml
21st Aug 2019 first session of chemotherapy
11th Sept 2019 second session of chemotherapy
26th Sept 2019 PSA 10.81 ng/ml first time above 10
2nd Oct 2019 third sessio of chemotherapy
11th Oct 2019 PSA 11.76 ng/mo
23rd Oct 2019 fourth session of chemotherapy
7th Nov 2019 PSA 10.04
5th Dec 2019 sixth session of chemotherapy
12/13th Dec 2019. terrible pains in my back and groin lasted 12 hours
13th Dec 2019 PSA 9.67 ng/ml
19th Dec 2019 TAC scan showed a stone in my left kidney, plus spread to hip, rib and lymph nodes
23rd Dec 2019 Urologist tried to break up stone via ultrasonics unsuccessful
27th Dec 2019 Oncologist reviewed the TAC scan and recommended another 4 to 6 sessions of chemotherapy but a stronger doze 135mg
15th Jan 2020 seventh session of chemotherapy
16th Jan 2020 Urologist had another go at breaking up the kidney stone unsuccessful
18th Jan 2020 PSA 8.65 ng/ml Testosterone 0.1ng/ml
22nd Jan 2020 PET scan
1st Feb 2020 PSA 10.39 ng/ml
5th Feb 2020 eighth session of chemotherapy
22nd Feb 2020 PSA 12.48 ng/ml
26th Feb 2020 ninth session of chemotherapy
Stu's e-mail address is: stuc0204 AT gmail.com (replace "AT" with "@")
