A letter sent to my GP from the hospital Consultant dated 19 January 2009 probably gives the best background to my case and therefore I have included it here without any omissions but with a few comments from myself which are in italics and in brackets.
Diagnosis: Carcinoma of the prostate clinically T3 (?T3b) NO MO Gleason 8 (Gleason 7).
Pleasant gentleman, (a good start but will it help me?) reasonably fit with no co-morbid illnesses, though he has been investigated for cardiac murmur. According to him these investigations did not show any abnormality. He was seen initially by the urology team in March 2008 (investigating why blood was found in my urine) when he had a flexible cystoscopy for microscopic haematuria which did not show any abnormality. (at the same time I had a digital rectal examination after which I was assured there was nothing amiss) He has since then had a PSA done in June 2008 which was found to be elevated at 20.8. He was subsequently reviewed in December 2008 when he had a TRUS biopsy which confirmed Gleason 8 adenocarcinoma of the prostate, though the MDT records suggested that this was revised to Gleason 7 , I need to clarify this and I am going to rediscuss this at the MDT. He has since then had an MRI scan which showed T3b NO disease and a bone scan which has reported as showing no metastases, though there is an abnormality in the right sacroiliac region, which I want to clarify in the MDT.
He has no past history of bowel disorders. He is at present on Aspirin, Lansoprazole and a small dose of Statin. He lives with his wife.
Clinically he looked well and fit, though extremely anxious today.(I had just been told I had cancer, how was I expected to feel?) He had no palpable nodes in his neck and abdomen was soft, hernial orifices were free. Rectal examination revealed a very irregular, clinically malignant prostate affecting both sides but mainly on the right.
I have discussed the diagnosis with him and explained that as there is sufficient evidence at the moment to suggest that his disease is confined the prostate, albeit locally advanced, he would be suitable for a course of curative treatment options.
I would suggest hormonal therapy initially for 3-4 months, following which he will be given a course of radiotherapy the prostate. I would then like to continue the hormone treatment for a further 2 years at the completion of radiotherapy in view of his aggressive Gleason score.
I have explained the side effects of the hormone treatment which include hot flushes, hot sweats, impotence and slight tenderness in the nipple and breast. I have not mentioned the side effects of radiotherapy in detail to him, as I felt he was already overwhelmed with the information today. However, I told him I will review him again in two months time, once he is established on the hormone treatment and then discuss radiotherapy and proceed with it.
As I normally give 3-4 months of neo-adjuvant hormone treatment, this would not interfere with his treatment plans. In discussing treatment options, I mentioned that I would consider him suitable for combination of external beam radiotherapy, followed by high dose rate brachy boosts. His prostate volume was consistent for this approach, as was his IPSS score. I may however consider doing one more assessment of the residual volume which at one point was about 100 mis.
I have given him a letter and have requested you start him on hormone therapy and would be grateful if he could be started on Casodex 150mg for 4 weeks and sandwiched between two weeks of Casodex on either side, to start LHRH analogue injection. I would be grateful if you could use long acting preparation of LHRH and continue this at 3 month intervals. My plan is to continue the hormone treatment for 2 years after radiotherapy.
Consultant in Clinical Oncology
I will give you an update on what has happened since then in a short time.
The diagnosis came as a massive shock, not least because I had none of the classic symptoms associated with prostate cancer and still don't. In the whole of my adult life I have never had to wake in the night to use the toilet, either before my treatment or since.
Hormone treatment started on 18 January 2009 and by the time I saw my Consultant again on 17 March my PSA was down to 0.7 and the only major side effects apart from ED where sweats and hot flushes which still persist though not so bad, weight gain particularly around the waist and upper legs and loss of body hair. On the plus side I now have hair on parts of my head that have been bald for years.
By 17 July 2009 thirteen sessions of external beam radiotherapy were completed without any side effects, not even the expected tiredness that I had been warned might occur.
On 27 July 2009 I had the first of two sessions of HDR - (High Dosage Radiation Therapy) Brachytherapy, both involved an overnight stay in hospital. The experience was positive and reassuring and I felt fortunate that what was considered to be the best treatment for my case of prostate cancer was available only 4 miles from my home. I understand only 12 catheters where required to deliver the treatment to the prostate, the hormone treatment having reduced it's volume. I did have quite a bit of pain on being woken from the anaesthetic, strangely enough in my ankles from being strung-up in that very undignified position for so long. I was discharged the next morning after they were satisfied I was able to empty my bladder without problems. Once at home I had some pain when passing water as a result of the urine catheter used during the operation but that soon passed.
Two weeks later I had my second session of HDR Brachytherapy. The procedure was the same as the first; 12 catheters to the prostate to carry the controlled dose of radioactive treatment. It was the same dedicated team lead by my Oncology Consultant who also performed the procedure. After effects were much the same as the first session, nothing too traumatic.
October 2009. On the 6 October I had my first post treatment review with my Oncology Consultant and he confirmed my PSA was down to 0.3 and he now wants me to have a further test in December and still insists that I should remain on hormone treatment for 2 years.
November 2009. I feel I have handled it all quite well so far, but in the last week or so doubts have started to set in and for some reason I have lost some confidence and optimism. I found information on the internet which predicted that given my combination of PSA/Gleason/Staging the possibility that the cancer will spread to other parts of the body is very high. At my next review on the 29 of December I will mention this.
In the mean time I feel fine and the irony is that everyone says how well I look. Thanks for listening to me.
31 December 2009: At my meeting on the 29 December 2009 with my Hospital Oncology Consultant he informed me my PSA was down again to 0.20 which he assured me was very satisfactory.
When I tried to discuss the slight discomfort I have experienced recently in my right lower back he referred to his original notes and did his best to reassure me that it had nothing to do with the prostate problem. If it gets worse I intend to press him further on this but it's hard work getting information out of him. He now says I will continue on the 3 monthly hormone implants 'at least' for 2 years. He has added the 'at least' since my previous visit which disappointed me quite a bit as the hot flushes that comes with them are a nuisance but better than the alternative I suppose.
As to diet;I am trying to follow the advice of professor Jane Plant and avoid red meat and dairy products.I don't find the diet a hardship and I'm probably better for it.
I think the end of the year is probably a good time to thank everyone for their contributions to this wonderful site and send my best wishes to you all for 2010 when I hope to update you in April.
[Barrie's attempt to update his story in April was foiled by my absence]
Tuesday 20 April 2010: My first meeting of 2010 with my hospital consultant went well. He was able to tell me the result of my latest PSA test, which was unchanged at 0.20.
He questioned me at length on side effects I may have experienced since my treatment during 2009 and seemed pleased and even surprised by my total lack of any side effects (except of course the ED as a result of the ongoing ADT treatment). He confirmed I will stay on the hormone implants ever 12 weeks for the foreseeable future, however, for the first time he actually referred to the treatment as a 'cure'. Obviously I was pleased to hear this from him but will keep my feet firmly on the ground.
In the mean time the weather has improved here in England, but just in case it doesn't last, Spain beckons in May for a couple of weeks. I hope I have been able offer hope and encouragement to some of you; thanks again for listening and good luck and best wishes to you all.
Friday 10 June 2010: Spain already seems like a distant dream and the reality of the weather in England in June too real a nightmare.
In response to a reminder, Barrie said:
I have an appointment with my hospital consultant at the end of this month (July) and I was waiting until after I had seen him before I gave you an update on my progress. As soon as possible after I have I have seen him I will be pleased to send you an update.
Thank You and Best Wishes....Barrie
My most recent meeting with my hospital consultant was way back in July 2011 when my PSA was 0.05, a small increase but he was unconcerned. He reiterated that the hormone implant due in January this year will be my last, by then I will have been receiving them for a total of 30 months.
I am still feeling fine although I did have a very unpleasant urine infection a few months ago which worried me, thinking it was connected to my prostate problem. However it was soon corrected.
My next hospital appointment is next week on the 17 January 2012 when I will learn the result of my latest PSA test and I will give you a brief update following that meeting.
I wish you all a very happy new year.
Friday 20 January 2012: At my meeting yesterday with my hospital consultant he informed me that my PSA was unchanged at 0.05 which pleased both of us.
He did however renege on his promise that the hormone implant which I had today will be my last; he wants me to have just one more in April which he says will definitely be the last - I will wait and see.
In the mean time I feel fine and incredibly grateful for all that has been done for me and for the and for the support afforded to me by the YANA site.
Good luck to you all.
I had my very last hormone implant in April 2012 and at a meeting with my hospital consultant last week he was pleased to inform me that my PSA was static at 0.05. He did however warn me that now I am no longer having the hormone implants there could be a small rise in my PSA in the near future but that this was to be expected.
Nothing much to add but I will try to update at least every 6 months.
Good luck to you all - Barrie
Prompted by a timely reminder from Terry and Mark, I am pleased to give you a short update as to my progress.
I have seen my hospital consultant twice since my last report; firstly on 5 February 2013 and then again on 29 July 2013. I am very happy to report that at both meetings he was able to confirm that I am making positive progress as my PSA remains constant at 0.05. The best of news was that he stated he will discharge me on my next visit in January 2014 if I continue without problems developing. The only long-term effects remains ED. I did have unwelcome weight gain as a result of my treatment but I'm happy to say that by following a strict diet I have been able to get back to very near my pre treatment weight and feel much better for it.
Each time I visit the hospital I'm asked to complete an (I-PSS) form which stands for International Prostate Symptom Score; I guess you are all asked to complete the same form. My score each time is zero or very close to it, long may that continue.
Thank you for taking an interest in my case; I hope I have been able to offer you some encouragement.
Very Best Wishes To You All.
I started way back in 2009 with a copy of a letter sent to my GP by my Hospital Consultant and thought it appropriate to end with his most recent letter:
Dear Doctor ......,
I reviewed Mr Spark who is very well. It is now 2 years since he discontinued the hormone treatment. His PSA remains less than 0.05. He has no urinary or bowel symptoms and his IPSS score was 0. I have discharged him from further routine follow up to my clinic and he is quite pleased with this. May I request you monitor his PSA every 6 months and if at any time the PSA should go to 2.0, please do refer him.
Best Wishes Doctor S..........
I am of course more than 'quite pleased', I am delighted and shall be eternally grateful for all that has been done for me and the very positive outcome. I wish you all the very best outcome also.
Time seems to go so fast and it's over one year since I last reported on my progress. Thanks to a gentle reminder I am pleased to tell you I am doing fine. I have a blood test by my GP every 6 months, the latest one being in June 2015 and the PSA was a satisfactory 0.05 which is very pleasing.
I have my 75th birthday in October but have some way to go to catch-up with my sister Sarah in Australia who will be 90 this month - Happy Birthday Sarah.
Thanks for reading and very best wishes to you all.
I have had two PSA tests since my last report, and I'm pleased to say that both of them were satisfactory at 0.05. The latest test was in July this year.
I am progressing well and pleased with my outcome.
Very Best Wishes to you all.
My latest PSA test was in January 2017 and I'm pleased to report a result of PSA 0.02 which is very satisfactory, long may it continue.
I do hope you are all getting good news and are progressing well.
Very Best Wishes... Barrie
Barrie's e-mail address is: firstname.lastname@example.org