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Peter Boon and Pepi live in England. He was 63 when he was diagnosed in March, 2009. His initial PSA was 5.90 ng/ml, his Gleason Score was 7, and he was staged T1c. His choice of treatment was External Beam Radiation+ADT. Here is his story.

December 2007 : Attended general "well man" medical health screening at local doctors surgery. DRE(Digit Rectum Examination) and PSA Blood test performed and a week later the Lab confirmed a PSA level of 2.7 - Doctor confirmed this level as normal, relax - no further investigation required.

April 2008 : Made appointment and told the Doctor about lack of sleep due frequent visits to the toilet at night. Had another blood sample taken and Doctor also performed another DRE, said Prostate felt fine (smallish BPE - Benign Prostate Enlargement) but size within limits for a man of my age - (then 63)- PSA level came back at 4.9 - Doctor said no further action required!

3rd June 2008 : Another appointment with Doctor, I'm still not happy and again mentioned interrupted sleep which was causing a general malaise/fatigue etc. Referred to specialist at hospital, another DRE performed "no masses (tumour) detected" and the prostate felt near normal size & texture!

20th February 2009: Appointment arranged again with local Doctor as I was still not happy with my health and energy levels due to disturbed sleep through frequent visits to the toilet. Doctor prescribed tablets to "relax" the bladder muscles and calm things down for what he said was an "excited" bladder. I requested another PSA blood test as it was nearly a year since the last one (10 months) PSA level had increased to 5.9. The Doctor then referred me to the Urology department at the Churchill Cancer Hospital Oxford.

11th March 2009 : Attended first appointment and consultation with Urologist with trainee doctor in attendance, both doctors performed DRE's and both confirmed prostate felt smooth and normal. He then proposed a biopsy there and then(shock/horror) to eliminate the possibility of Prostate Cancer. Had 8 biopsies taken about an hour later.

23rd March 2009 : Follow up meeting with Urologist for results from the biopsy. He got straight to the point. 6 out of 8 biopsy's samples were positive and he confirmed medium to aggressive Prostate Cancer, (Gleason level 7 (4+3) so treatment was to start immediately. Shocked, stunned and devastated, my wife and I went into another room where the nurse discussed the next steps, I could not take it in, I was in shock!

30th March 2009 : Had MRI Scan to see if the cancer had spread and if so, how far.

7th April 2009 : Results from MRI scan were fairly positive with no lymph gland evasion or any other sign that it had spread in to the bones. There was however an area on the right side of the prostate where the seminal vesicles are attached to the prostate that was indicating a possible break out and local invasion. The radiographers studied my MRI scan very thoroughly as my notes showed a PSA level of 519 ! Administration had mistyped the number and which should have read 5.9. As the cancer was possibly not contained completely inside the prostate capsule, we had the briefing from the Oncologist regarding radiotherapy combined with hormone treatment.(ADT) If the tumour had broken out of the capsule, they would not recommend surgery to have the prostate removed as some cancer could be left behind.

21st April 2009 : A further meeting at the Churchill to discuss the results of the MRI scan and the suspicious shading picked up on one side of the prostate gland. Given the choice, I wanted surgery and the prostate gland removed completely and binned! Surgery was not going to be an option until we could definitely investigate and clarify what this shadowy area was. This could only be done with a second biopsy which would consist of three further sample biopsy's samples taken but further up into the area just outside the prostate gland and in to the seminal vesicle area. This would involve more discomfort or my other option was to forget the second biopsy and go for the only other realistic treatment option of radiotherapy. This was a heavy decision and I wanted to make it at this meeting but if I wanted surgery, the second biopsy was the only way forward to confirm whether the cancer had as suspected, broken outside the prostate capsule. I asked the Specialist Doctor what he would do in my position and he said "I would want to know what that shadow was" I was 50/50 at that point in my decision as what to do next so this helped me decide and I agreed to have the second biopsy. He would perform it that afternoon.

28th April 2009 : I got the results the following week confirming a break out from one side of the prostate capsule in the duct area leading to the seminal vesicle so surgery was not recommended. During my previous appointment with the consultant Radiographer Oncologist, I had the cancer drug prescription forms ready to give to my local GP and I started the hormone treatment the next day.

30th April 2009 : I took the first "one a day" Casodex Hormone tablet which had to be taken for 28 days and I also programmed my first monthly Zoladex injection for two weeks time with the local GP. I would then need a further two Zoladex jabs at one month interviews ending in mid July.

15th May 2009 : First injection of the slow release pellet of Zoladex into the side of the stomach wall, slight pain when the needle went in but nothing to worry about especially after my two back passage biopsies!

4th June 2009 : Update - The side effects I am experiencing are as described in the Zoladex drug literature, namely general fatigue, mood swings and hot flushes but I am still able to work.

15th June 2009 : Second Zoladex Jab. Waiting hear from the Churchill Cancer Hospital regarding the schedule dates to start my radiotherapy treatment.

10th July 2009 : Had a couple of really bad days and on one of them, I could not move from the house. Just generally felt unwell so I phoned the Cancer specialist nurse who suggested I get an appointment with the local Doctor and have a "mini" check up. He took my blood pressure, which was fine and suggested a urine sample just as a check for infection.

15th July 2009 : Appointment for 3rd Zoladex jab and last before Radiotherapy - he had got the results back from the Lab for the urine sample and he confirmed I had a minor bladder Infection. Given 5 days of antibiotics and then I requested another PSA check as it was now 5 months since the last and it would be interesting to see what the hormones were doing to the last PSA reading of 5.9.

22nd July 2009 ; Asked for results of blood sample, PSA 0.20!!

Amazing - the combination of Casodex and Zoladex have really had an effect. Really pleased with this positive news, should get letter from Hospital soon outlining details of the Radiotherapy schedule.

11th August 2009: Had received letter inviting me to the treatment Planning Session and discussion with Radiographer. Had CT scan then tattooed on trunk to line up x- ray beam. Given schedule for treatment starting 2nd September. 3rd Zoladex jab was due to run out around 15th August so checked with Hospital and they recommended a 4th injection

2nd September 2009 : First Radio Therapy session. Very impressed with the whole set up. The Churchill Hospitals new Cancer unit was just completed before my PC diagnose and had cost 21 million. All the staff I've met are very positive, friendly and make you feel at home which immediately relaxes you. They spent some time positioning me with laser "cross hairs" using the tattoos reference points. Took some normal x-rays left side and right just to be sure prostate was on target. The warning klaxon starts and the staff move out of the room to administer the dose and control the Linear accelerator in the control room remotely by computer. You hear the machine start on the left side and buzz for only around 15 seconds, pause then the huge linear accelerator head on the machine moves to the centre position directly above your pelvis and gives another burst and then finally swings over to the right for the final dose. That's it, easy as that accept I will have to repeat this process for 34 days. When the therapy was completed, I would have been given 70 "Grays" (or 700 Rads) of radiation. During treatment you do not feel anything but shortly afterwards I felt overwhelmingly tired but after a nights sleep I returned to normal the following day.

1st October 2009: Now had 22 sessions and I'm now beginning to feel some side effects as expected. A combination of disturbed sleep toileting up to 8 times in the night and the accumulation of radiation in my system leading to immense fatigue.

20th October 2009 : Completion of 35 sessions and side effects as predicted.

29th October 2009 : Blood test for PSA level arranged for 25th November and appointment at Hospital on 8th December to discuss results.

UPDATED

December 2009

27th November - Rang surgery for results of a blood test taken 3 days before, the first blood test after finishing Radiotherapy on the 20th October (5 weeks ago) and also nine weeks after my last monthly Zoladex hormone injection. PSA 0.20 and testosterone normal.

I'm very pleased with that result so steady as she goes! The bladder has calmed down a lot now, only getting up at night once or twice and occasionally sleeping through the night which I have not done for years. The effects of the Zoladex are nearly out of my system,(took much longer than I thought!)so now I am feeling all together a lot better.

I have got the first post treatment meeting with the Radio Therapy oncologist specialist on the 8th December so it will be interesting to get their feed back on the 0.20 PSA result.

More later

Later: I've had the all important first consultation on Tuesday 8th December with the oncologist Doctor after finishing the treatment at the Churchill Hospital Cancer unit.

We have the best news for Christmas ever! He does not want to see me for another year with only blood checks every 6 months. I know its early to celebrate and I cannot say I'm cured for at least 10 years but we have this little tiger zapped for a while and maybe forever!

Truly folks, I'm feeling so much better, my energy's and motivation is back, I just need to lose some weight which is left over from the Zolodex. More walking with the dogs, reduce all dairy and back down the Gym will be my strategy The specialist did say that the PSA will most likely slowly rise in the future due the good prostatic cells re-growing and putting more PSA in the blood. We will just have to wait and see where it levels out to (I think it called Nadir?) [Indeed the nadir is the lowest level reached.]

So I will be glad when the year 2009 has passed and look forward to a very positive 2010!

UPDATED

October 2010

Since finishing radiotherapy last year I have requested four blood tests in the last year to measure my PSA level roughly every 3 months. The PSA results are as follows:

1st - 0.20 ng/ml
2nd - 0.10 ng/ml
3rd - 0.10 ng/ml
4th - 0.20 ng/ml

I will request one more PSA reading before my annual December meeting with the specialist and update this site in the new year with the results.

God Bless you all and here's hoping!!

UPDATED

December 2011

Good news first, still at 0.10 PSA and just passed my annual check up with flying colours so now on annual appointments.

Bad news, 2 months ago suddenly blood & clots in urine so doctor arranged CT scan and camera up the penis to inspect bladder. Had a real bad day, violent reaction to iodine in blood stream for the Liver/kidney CT scan and had to be attended to by doctors/nurses etc. Calmed down after 3 hours to have the bladder cytoscope inspection. Doctor said I could watch the screen during the inspection and after moving the camera around the bladder, there it was, I saw it for myself, bladder cancer.

I'm absolutely devastated and now I have got another cancer fight on my hands. The cancer was removed 4 weeks ago and had 1 dose of chemo for good measure and I can tell you its been a very painful experience. Went back last week for results and its fairly aggressive stage 2/3 so they want me back for more biopies at end of Jan to double check the bladder is now clear of cancer. If it is then its 6 weeks of BCG treatment (live TB virus once a week) and then now again for 5 years to make sure it does not return. If they do find any cancer then the bladder has to be removed completely with a 6 hour operation and I end up with an external plastic tank.

I wondered if any other PC sufferers that had had similar circumstances with their bladder after having ERBT? Or am I just very unlucky?

Best wishes and have a great Christmas

Peter Boon

UPDATED

January 2013

Since my last update the last 12 months has been very challenging with continuing Bladder Cancer treatment. This involved several operations checking the inside of the bladder, taking biopsies and up to now, 15 infusions of BCG treatment(a sort of chemo) so 2012 is a year I want to forget. However, the year finished very well with the best news, the last inspection came back free of all malignancies so effectively I am cancer free! The other great news is my 6 month PSA check returned another 0.1 reading so steady as she goes with the PC. The bladder BCG treatment and inspection operations will continue for another two years when all being well it will move to yearly inspections. I am so lucky to live only 10 miles from the Churchill Hospital which is a dedicated specialist Cancer Hospital and the regular attention I am receiving is first class. I truly feel very positive for 2013 and God willing I'll have good news for you in my next update in 12 months time. That's all folks and the Best New Year wishes to you all.

UPDATED

January 2013

Further update: I had my annual PC review meeting with the consultant today and the outcome took me by surprise. He said because my PSA level has been consistently low and steady, blood test after blood test for 3 years now, In his professional judgement he said there was only a very tiny chance of PC returning and that I am as good as cured. He does not want to see me in future and recommends I self check my PSA levels every 6 months with my local Doctor for 18 months which will take me to 5 years from diagnosis. So folks, unless I'm very unlucky I am considering my self cured. My best wishes to you all for 2013 and I will update again in 12 months time.

UPDATED

May 2014

Prostate Cancer - Latest PSA results show still steady at 0.1

The latest bladder inspection shows clear showing NO malignancies so I am still cancer free. I continue to have preventative doses of BCG treatment into the bladder (3 doses over three weeks) and that's every 6 months followed by bladder inspections using a flexiscope every 6 months. This is great quality care from the Churchill Hospital and I am so thankful for the thorough and professional support I receive. This monitoring regime will continue for around another 18 months when I then switch over to 6 month inspections only and then, if all is still clear, annual inspections. I will look forward to updating you all in another 12 months. Best wishes and God bless you all.

UPDATED

June 2015

Nothing to report, Still working. Had my Big 70 birthday in May, feel fine. Finished my BCG chemo for the bladder 9 months ago so no more treatment other than 6 month camera checks. Suffering from a "stricture" which interferes with the flow when you pee! Might need a small op to open it up a bit and it also causes a problem trying to get the camera in to the bladder. I'll let you know how I got on in the next update. Good luck and God bless to all.

UPDATED

July 2016

All good with nothing to report just PSA blood checks every 6 months. Bladder cancer inspections moved from every 6 months to every 12 months so "steady as she goes". God Bless and good luck to you all.

UPDATED

October 2017

Currently tracking some unsual activity with my PSA levels which have started to increase. For years since treatment (2009) the PSA level has been very low at around .1 to .2 The last PSA check on 13th Sept 2017 it had increased to 1.78 One year ago it was .42 Had meeting with oncology specialist at the Churchill and we have agreed further PSA checks in 3 months and 6 months and see the level then. If over 4 they will take a top to toe "PET" scan to check for any maligancies and try and understand why the PSA levels are increasing. I have no other symptoms and I am continuing to work 20 to 30 hours a week.

The annual camera check for the bladder showed all clear so no worries there. I will update again in the new year. God bless to all.

Peter's e-mail address is: petergboon AT gmail.com (replace "AT" with "@")


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