I was diagnosed with prostate cancer in February 2006. It was the first illness I have ever had diagnosed.
My thoughts on diagnosis were 'I will never see another Christmas or Birthday.' 'I will never see my grandchildren grow up.' 'How will I tell my three sons and my daughter that I have a terminal disease?' 'Who will clear out my garage???!!!'
After diagnosis I went to Harley Street for a second opinion then to Addenbrookes for a third opinion then to The Princess Margaret Hospital in Toronto for a fourth opinion. Then I decided these eminent people were going to treat my cancer so I needed to know what they were planning to do with me so I set of on a course of research by scanning the internet and the first site I came upon was PHOENIX5. What a great inspiration Robert Vaughan Young was to me. I downloaded all his diary for future reference and I also kept in touch with his partner who became his wife before he died. RVY taught me about looking after myself as most of the professional surgeons radiologists etc are brilliant at what they do but it takes a prostate cancer survivor to know what it actually feels like living in a cancer bubble. [I was privileged to know Robert Young (but not to meet him in person unfortunately) and I have posted his sage advice as the first item on the Yana Forum. Everyone diagnosed with prostate cancer should read this.]
The treatment I decided upon in 2006 was (after Casodex) Zoladex implants (3 monthly) and Zometa infusion (Zoledronic Acid). My PSA dropped to undetectable almost at once and remained there until in Oct 2009 I decided to stop all treatment. By my clinic visit 10th February 2011 my PSA had doubled from 7.5 to 15.8 in a month so I have decided to take a holiday with my partner Carolyn and when we return I will decide what treatment, if any, I will try.
I have learnt to live with prostate cancer and because I have had no serious pain (just enduring the 24 side effects of ADT!!!!) I am enjoying the journey in a strange way BUT it has brought me into contact with some wonderful people.
In October 2009 I decided to stop all treatment (Zoladex and Zometa) my PSA had been at 0.1 for almost a year. My idea was to give my body a rest from the drugs knowing that at some stage I would have to go back to ADT.
Life became much easier as gradually my body realised the joy of being back in control of ALL bodily functions.
I kept a monthly check on my PSA. At Christmas 2010 my PSA started to rise first 2 then 5 then 11 then 27 then 53 at which point in March 2011 I decided that I would go back on the injections (ADT) but this time instread of Zoladex I decided to try Prostap and it was one of my best decisions as the side effects were much less for me.
Immediately my PSA tumbled to 0.5 and my last PSA test done October was 0.2. So for me intermittent ADT (IADT) will be my way of life from now on. If my PSA reaches 0.1 by Christmas this year I will come off all treatment again. IADT is not for all men but it certainly gives me something to look forward to.
In March 2011 I started back on Hormone therapy at the end of 18 months with NO treatment because my PSA had dropped to less than 0.1 for 3 months. By March 2011 my PSA had steadily risen to 55 and so I tried Prostap injections as a change to the Zoladex I had previously.
The Prostap worked very quickly and my PSA dropped again to less than 0.1 and the real bonus was that the side effects I had from Prostap were much less than those that I had with Zoladex (depression is nil, anxiety is almost nil, hot flashes minimal, fatigue is about the same, weight gain is my biggest side effect). On 15th December 2011 I decided that I will not be having the Prostap injection that I was due to have on 7th January.
I will now monitor my PSA on a monthly basis and this time (IADT) I will restart hormone therapy when my PSA rises to approx 10 (To allow my PSA to get to 50 last time was a BIG gamble that worked for me but I wouldn't recommend it for others).
There have only been a few small studies on IADT but I believe it has enormous benefits for many of us men in our search for quality of life.
It is now 5 months since my last hormone (Prostap) injection and my PSA is less than 0.1 as of 8th February which happens to be the sixth anniversary of my diagnosis. My disease never ceases to amaze me! I feel physically no different to before I was diagnosed I look different but that is because I have put on 28lbs as a result of the HT. Psychologically life is so much different and in many ways it is actually better because I place more importance in quality time with family and friends as well as planing to do things that I enjoy.
Of course I have anxiety moments but that is all they are they are really horrible and not where anyone wants to be but they do pass, the lethargy is difficult as I know it is a side effect but I sometimes wonder if I use it as an excuse to get out of the washing up.
Overall life is very good. My wish for the future is that we can accept the PSA test for what it is and look into how it is interpreted so that the over-treatment issue can be resolved. I wish that all men with bony metastatic prostate cancer be given the opportunity to try the new treatments so that they can discover some quality of life at a period in their life when current treatment options are limited. I wish for a better support system for those who love and care for all our prostate cancer men life is so tough for them.
Firstly let me apologise for not updating my profile on YANANOW but really very little has changed. I am now 7.5 years into living well with cancer. I am still practicing IADT currently back on treatment after trying Prostap I have reverted back to Zoladex because the side effects were less severe for me. My current PSA is 0.4 and falling.
Today is truly a 'RED SOCK DAY'.
The Queen has appointed me an MBE in her Birthday Honours list because of the work I do through the red sock campaign in supporting all those affected by prostate cancer.
It is now 8.5 years since I was diagnosed with metastatic prostate cancer that had spread to lymph nodes. At diagnosis my PSA was 124 and with a Gleason score of 9 (5+4). My only treatment has been periods of on and off hormone therapy (IDT) (interchanging between the Zoladex implant and Prostap injections. Once a year I have an infusion of Zometa to help my bones. I consider myself to be as fit and healthy (ha ha) as I was at diagnosis taking into account I am now 8.5 yrs older.
My latest 'off' treatment period went from June 2013 to April 2014 during which period my PSA had risen fron 0.4 to 17 at which point I started back on hormone therapy.
In June 2014 my PSA was 4.2.
My next PSA test is due in 2 weeks. I will be looking to get my PSA down to less than 0.5 and stable for 3 months at which point I will consider having another period 'off' treatment.
The longer I can put off the advancement of my prostate cancer the better chance there will be off a treatment that will suit me as an individual.
Currently I enjoy a superb quality of life and look forward to many more years of living with prostate cancer.
In closing this update I want to say how sad it was to hear of the passing of Terry even though I never met him I considered him to be one of my friends.
It is now 9 years 5 months since my diagnosis of metastatic prostate cancer in February 2006.
My PSA at diagnosis was 125 a biopsy gave me a gleason score of 9.
My TNM was T4N1M1 with osteoblastic lesion on L5.
Today in clinic my PSA was 0.9 so my consultant and I have decided that for the 5th time I will stop the hormone therapy (Zoladex) and monitor my PSA until it reaches around 15 this is not an exaqct science and there are no clinical guidelines for doing what I do BUT it works for me.
The health care professionals call it intermittent androgen deprivation therapy (IADT).
I would be pleased to hear from anyone that practices IADT.
The only downside for me today in clinic was that my bone density scan (DEXA) gave me a Tscore of minus 2.1 which puts my bones in the high end of the osteopenia range so my consultant and I have agreed that I should have an infusion of Zometa (zoledronic acid) along with some calcichew.
My next clinic appointment is in October which is when I will check my PSA level.
After 9 years of living with metastatic prostate cancer I can say that I feel the same now that I did on the day I was diagnosed, except for the emotional stuff.
My red sock campaign of awareness and support for all those affected by prostate cancer goes from strength to strength. It is encouraging that more men and those who love them are asking more and more questions about prostate cancer treatments, trials and research.
This YANANOW site is an amazing place where you can find men/carers who are going through something similar to yourself.
It is a year since my last update. Until April 2016 very little had changed in a year although my PSA had begun to rise again.
On January 26th 2016 I celebrated 10 years since being diagnosed with non bony metastatic prostate cancer (Gleason 9, PSA 125 at diagnosis).
I have been practicing IADT (Intermittent Androgen Deprivation Therapy) for the last 8 years. Time on hormone therapy (HT) with periods off HT my thoughts being that once the HT had reduced my PSA to a stable and low number I would give my body a rest from the HT.
IADT worked well for me but comes with risks so it needs to be carefully monitored between patient and consultant.
2015 March 19th my PSA was 1.1 and stable
2015 March 30th I had HT Zoladex 10.8 implant
2015 June 11th my PSA was 0.9 so I decided to come off HT until my PSA rose to a level about 15.
2015 July 10th I had an infusion of Zometa to strengthen my bones.
2015 September 2nd my PSA was 1.3
2015 November 5th my PSA was 4.8
2016 January 7th my PSA was 7.4
2016 April 14th my PSA was 22.1
2016 May 4th Full body bone scan
2016 May 6th CT scan
2016 May 9th my PSA was 36.0
What happend between January 7th and May 9th 2016 highlights the risks in IADT.
It was my PSA rise from 7.4 to 22.1 that triggered the urgent scans (I was due to have these scans in July/August 2016 as part of my ongoing monitoring process).
The scans showed that my cancer had spread to my bones in the form of a tumour on T10 it also indicated an issue with my bladder.
The bladder issue (probably caused by an enlarged prostate) resulted in me being catheterised for 5 weeks following which I had a urinary infection that required antibiotics.
My consultant and I decided that I would have a month of bicaltumide (casodex) before going back on Zoladex (my choice of HT treatment).
The 8 weeks from between April/May and early June were some of the worst months since being diagnsoed in 2006.
Having to tell my children that my cancer had now spread to my bones which in turn had changed my prognosis was even more difficult than telling them 10 years ago that I had prostate cancer.
So that was all the bad news.
The GOOD news is that my bladder is now working better than it has for many years with an almost perfect flow of urine.
2016 June 9th my PSA was down to 4.2. (my next PSA will be tomorrow July 28th)
Has life changed for me? YES it has, I actually feel better than I have ever felt since being diagnosed.
Of course the HT (Zoladex) brings with it all the usually side effects such as hot flushes, fatigue, lethargy and joint discomfort, but after almost 11 years I understand the side effects and why they occur.
Bony metastatic prostate cancer will see me having PSA tests on a monthly basis (my choice).
And whilst I am feeling well I will continue to do all the things that I have always done and enjoying every minute of every day.
As many people know my passion and mission in life is to support all those affected by this awful disease.
"Keep smiling it confuses them!"
Such a lot has happened in the last 9 months. After 11.5 years of keeping my PCa under control the disease has started to progress.
I returned to ADT (3 monthly ZoladeX/hormone therapy) in October 2016!following a small rise in my PSA.
Late December and I was having urine retention issues so was fitted with a catheter (I still have a catheter).
Scans in February showed some new hot spots within my prostate so the choices were between having a TURP or radiotherapy.
My consultant and I decided that I would have 20 daily sessions of IMRT radiotherapy on my prostate starting on 11th May 2017. All went well with limited side effects of mild constipation and fatigue.
Results from CT and MRI scan done on 3rd August showed that my kidneys were not draining correctly and may need stents.
Started on Abiraterone (Zytiga)+ prednisolone (steroid) on 10th August As a reaction to my PSA rising to 20 from 4.5 in 3 months even though I was on ADT.
The next day (11th August) I had a meeting with my consultant surgeon and it was agreed that I would have surgery on 18th August aimed at solving the kidney issues and looking to return my bladder to its normal function and catheter free.
The operations were carried out at the same time. Permanent Stents were placed in my kidneys and a TURP was done on prostate (removing tissue from the inner lining of my prostate).
It is now 2 weeks since my operations as I wait for the small amount of internal bleeding and discomfort settle down. The catheter will be removed next week to test my bladder function.
Although feeling naturally tired I am optimistic that the operations will have resolved some of the issues and slowed down my prostate cancer progression.
My PSA is again down to 2.1.
I continue to be in amazingly good physical condition even after living 11.5 years of living with an original diagnosis of metastatic prostate cancer PSA 125 and Gleason 9.
I'm looking forward to many more years living with prostate cancer.
Keith's e-mail address is: keith.cass33 AT gmail.com (replace "AT" with "@")