Around mid 2001 I injured my knee whilst at work and when it did not recover I was told I would require knee reconstruction surgery. Prior to going into hospital for this operation I was required to have a blood test and the results of this showed that my PSA level was elevated. My doctor advised me to see a urologist, following which a biopsy was carried out on my prostate and four of the 12 samples taken in the biopsy were positive.
The urologist advised my wife and I that I had prostate cancer - it is very difficult to take in what is being said when you are told you have cancer - it is to say the least absolutely mind blowing! We were told of the choices that I had and I went away to try to make some sense of what I had been told. I found I had a lot of confusion and anxiousness when I was trying to work out what would be the best plan of attack to get rid of the "Dragon".
After much deliberation I decided to have the big operation, a radical prostatectomy which took place on 22 November, 2001. The operation was much more intense that I expected and even today I am still bewildered about the time it still takes me to do things that before I could do so quickly.
I was in hospital for about 9 days and came home with the obligatory catheter which stayed in for around 14 days. The pathology report on my prostate was that it was aggressive and had I not done anything about it I would have only been here for the next 12 to 18 months so my choice seems to have been a good one. My first PSA blood test after the operation was done at the beginning of March 2002 and I was very relieved to find that my reading had gone down to 0.1. This was the best news that I could have wished for, considering that the original reading started at 5.7 and within a matter of a week prior to the operation went up to 6.3. I will be having my next blood test in August 2002 and pray that it will still be 0.1.
Overall the whole experience has left me feeling somewhat disillusioned - I still have incontinence problems and am impotent. I am trying Viagra and this is helping but I know that I probably won't be entirely the same as I was before the operation. Physiotherapy is also helping somewhat. But there is of course a positive side and that is that I am still here to tell you my story. I would be pleased to talk to anyone should they wish to talk to someone about the course of action that I chose to take.
It will be 3 years this November since I had the radical prostatectomy operation. My PSA is now carried out every 3 months as suggested by my current GP to keep up to date on any changes in my condition. Since May 2003 my readings have been as follows :
May 2003 0.4 ng/ml
August 03 0.6 ng/ml
November 03 0.4 ng/ml
March 2004 0.6 ng/ml
June 04 0.5 ng/ml
I am still suffering some incontinence and impotence although this is not as bad as it was originally. I still have difficulty in carrying out strenuous activities such as lifting, walking distances and anything where I have to exert myself.
Unfortunately some 12 months ago I also contracted acute Ross River virus which has not helped me health wise and it is very difficult to sometimes decipher which problem relates to which condition.
In the interim you will gather from my PSA readings that my operation was not 100% successful and at this stage I am in limbo every quarter to watch and await the outcome of the next test. This I find very frustrating and get anxious when the tests are due. However, one wonders if they had left the original situation to develop where one might have been now. Will keep you all posted as time goes on and the tests continue.
Most importantly be positive in life as both myself and my wife have learned to be.
I have been meaning to get back on to the Yana site to update my details but I was waiting as I was due to have my PSA reading done. This was due to be done this month, the first time I have waited for 6 months to get the test, all the previous readings were done every three months and as you will see from the results, they ranged between 0.4 ng/ml to 0.6 ng/ml every time.
However, I was blown away this week when I had the blood test done after a 6 month wait (this was suggested by my GP and others) only to find that my reading has now gone up to 0.78 ng/ml which has had a very devastating effect on me and I will continue to have the readings done on a 3 monthly basis again from now on just to appease my mind and keep on top of any changes that may occur. I am not a hypochondriac, just a worry wart!!!
Updating from July 04, my PSA readings were as follows :
October 04 0.4 ng/ml
January 2005 0.5 ng/ml
April 05 0.6 ng/ml
July 05 0.6 ng/ml
January 2006 0.78 ng/ml
Except for the usual aches and pains I have been able to keep my incontinence mostly under control (about 95%) and impotence appears to be slowly recovering. I can now carry out most activities but I am aware that it is still easier to exert myself and I am always careful that I do not overdo things.
Unfortunately the acute Ross River Virus that I contracted in April 2003 still rears it ugly head, usually during the hot summer season and therefore it is very difficult at times to decipher which problem relates to which condition. However, prior to my last diagnosis I have made arrangements to re-enter into my original occupation of some 35 years (real estate) and I am in the final facet of regaining my licences required to do this. Even though this current PSA reading has thrown me I have made a decision that I will proceed in my endeavours of this occupation and I will hopefully be able to regain control of this health situation.
I would be most grateful if any other YANA members who have had a similar situation to my own (i.e. increase in PSA level after a similar period following their treatment - my operation was done in 2001) could contact me (email@example.com) to give me some idea of what action if any they have take under these circumstances.
Fortunately I still have all the love and attention that I need from my beautiful wife Debbie and our 2 devoted Kelpie dogs Beau and Princess who all keep me on the straight & narrow and have been my constant companions throughout this ordeal.
Apologies for not updating you sooner and look forward to some feedback from YANA members. Over the years since my operation and my contribution to the YANA website, I have spoken to 11 or so men who have contacted me for more in depth information regarding prostate cancer. Fortunately on several occasions I have been able to convey assistance to them from my experiences and to date we still remain in contact with each other from time to time as and when the need arises for further input.
Since my last update in February 2006, I have continued to have blood tests every 3 months to check my PSA levels. Following my last result in January 2006 at which time my PSA was 0.78 ng/ml, the level has begun to rise and my readings are as follows:
March 2006 0.84 ng/ml
June 2006 1.20 ng/ml
June 2006 1.30 ng/ml (Re-tested to check validation of 1.20 reading in the same month).
As we can all see things are going up! However since my last update other conditions have slightly improved (i.e. no incontinence problems and slightly more action on the impotence side of things.)
After receiving the last result of the PSA blood test, both myself and Debbie thought it was time we should look at the situation to see where we go from here. I contacted my GP who suggested that I go back to my original urologist/surgeon and discuss what options I may have to get things back under control. My specialist referred me to another colleague of his who is also a urologist and in closer proximity to me as we live in the country now. On visiting the "new" urologist a few weeks ago in an attempt to find out which direction we should go in, I was informed that it is not panic stations at this stage and after having X rays taken of lungs, chest and abdomen etc. all of which were thankfully clear, it would appear that a CT or bone scan would more than likely not show anything out of the ordinary at this stage. I was however informed that if I wish to go down the radiotherapy path or the hormone (castration) path.
However at this stage I have not made a decision as to what I will do for now. My next reading is due at the end of September 2006 and depending on the outcome of that reading I will make my decisions after this. Meanwhile I have been informed by a close medical friend about pomegranate juice and the success it has had in a US study of men with rising PSA levels. It apparently controls the PSA levels from rising at such a fast rate. I am trialling this method to see if there is any benefit to myself and will advise the results on my next update.
To any of my fellow YANA members who may have already tried the pomegranate juice and have had any type of positive result in their PSA levels I would appreciate contact with you.
Thanks to the YANA members that contacted me after my last update re increase in their PSA levels after similar period as mine and of what actions they had taken under these circumstances.
Until my next update be positive and keep fighting!!
I have posted below my PSA readings since the last one shown on the YANA site (March 06). I still have them done every 3 months or so, so that I can appease my mind and watch how much my PSA has risen. It is still slowly rising and at this stage I am still monitoring without any treatment. I am due again to have the test mid December 2007 for the next one. It is a little later actually due November, however my GP is away so I will have it done when he is due back (around 20th December 07).
7/7/06 1.30 (Had this reading done the week after the one before as my reading went over 1.0 and I was a bit worried, needless to say it didn't help. However the one in September 06 below reduced substantially).
Meanwhile during this year I have had no incontinence, a small improvement in erectile function with lots of feeling in this area. Most of my other aches and pains have disappeared from the operation. It took a while, I think this is due to my age and taking longer to heal.
I have had contact with several visitors via email from your YANA site. It is good to be able to assist and relate to others your own experiences. Hopefully I was able to help.
I did not have a good 2008 as in February 08 I suffered an unexpected ischemic stroke which thank God I have now practically recovered about 90% okay. I have lost some feeling in my right arm and hand and have had to re-educate myself to be careful when I pick things up or put them down.
I have listed my updated PSA readings from August 10, 2007 to current. I was very shocked with the last one, so was my GP. I have to have full tests (i.e. cholesterol, blood pressure, sugar levels and PSA etc) at the end of March 09. If the PSA is up again I will have some serious decisions to make as to what I will do.
CURRENT READINGS TO DATE :
August 10, 2007 PSA 2.20
Dececmber 3, 2007 2.00
May 15, 2008 1.70
September 8, 2008 2.50
January 15, 2009 4.60
As you can see by the last reading, I am concerned. Hopefully or wishful thinking, it will retreat again.
I will update again once I have had the tests done at the end of March. I would like to add that except for the slight stroke last year I have not had any recurring problems from my prostate operation in 2001. No incontinence, some erectal ability after the operation. Actually overall I feel fine.
Regards Dan Evans
Sorry for the delay in updating my condition. It has been a very busy year for Debbie and myself as we are in the process of selling our business and also my continuing bouts of health problems.
Knowing where to start is a problem. After enjoying a pretty good run with my prostate problem it all hit a brick wall in a big way with my PSA rising rapidly in 2010. I have listed my PSA results from the last one on record on the YANA site to my most recent reading in December 2012.
I was referred to an oncologist at this time due to the PSA doubling time in the last 6 months (2009/10) realising I had to do something NOW. Little did I fully understand the journey that I was about to take or how my decision to have further treatment would change my life or how it would effect my whole outlook on same.
Let's start with treatments from the start on 16/9/10. I had an extensive stress test with excellent results - heart and physical endurance 100%. By the way, I was feeling fine at the beginning, no symptoms or real health problems. On 20/9/10 I had a full PET scan which showed one suspect small tumour on the pancreas and one small tumour on the pelvic floor adjacent to where my prostate gland was removed 9 years earlier. It was decided that I should start hormone treatment ASAP and it was arranged for me to have a Zoladex 10.8 implant on 8/10/10. This is where my life turned around. The first few weeks made little change but at about 6 weeks later the rot set in. If anyone had to have side effects it would be me and I had the lot. Even now I experience these effects every day.
In the last YANA newsletter in December 2012 Terry & Mark outlined the importance of information being passed on to patients from Oncologists/GPS and specialists. How I agree! I meet so many patients in general public and on YANA that are told very little about side effects from all forms of treatment, medication and surgery. I agree wholeheartedly that a lot of the time some of those treating patients are money driven and have little feelings or empathy towards their patients - God help them if they ever have to go through life with what some of us have to face - KARMA!!!
Results after the ADT Zoladex treatment my PSA on 2/12/10 was down to 0.67. Another Zoladex implant on 21/12/10 reduced PSA to 0.36 on 20/2/11, then 0.21 on 18/5/11 and 0.11 on 29/7/11.
A bone scan was requested on 21/7/11 to check on bone density and osteoperosis from the side effects of the Zoladex implants. Results showed ostio in pelvic bones and lower spinal area. This then required a Zometa infusion on 29/7/11 to counteract the osteo.
My PSA then began to rise again.
Another ADT 10.8 Zoladex implant on 25/1/12
PSA down to 1.20 on 14/3/12
23/4/12: ADT 10.8 Zoladex implant
5/6/12: PSA down to 0.55
13/6/12: PSA 0.36
Zometa infusion administered on 12/7/12: Then PSA reading rose to 0.41
Last PSA reading done on 17/12/12: Currently 0.49
Well here we are in January 2013. Next PSA test is due in March and we will see where my PSA is at then.
There have been so many side effects for me from these treatments - fatigue, migraine headaches that come and go like the flick of a switch, hot and cold sweats (really debilitating in summer when you are already hot), mood swings, lack of sleep and peeing constantly during the night.
Although I am grateful for the fact that I am still here and also that my PSA is currently at a low level, the effects that the Zolodex and Zometa have had on me makes me want to advise others to really look at how these treatments may affect them before they start taking them.
For me personally if I had my choice again on treatment after RP surgery following the increase of my PSA readings I would more than likely opt for castration. I doubt if I would have had any of the chemical side effects that I have experienced and either way, the end results are the same, no nuts and a much smaller bolt that's useless.
Happy New Year to you all and may 2013 be a better year for us all healthwise.
Will try not to be so late in my updates next time
Sorry about the delay in updating my story in YANA site. Have had a huge year with many personal changes taking place (i.e. we have at last sold our business, just finalised on 28th February 2014) so I have now found time to fill in the gaps during the past year.
I have listed below where my PSA has wandered during this time.
19/12/12 2.20 UG/L 17/4/13 19.0UG/L 18/4/13 Zoladex implant
12/6/13 8.50 UG/L 2/9/13 3.70UG/L 14/9/13 Zoladex implant & Zometa infusion
26/11/13 5.00 UG/L 3/12/13 BONE SCAN 20/12/13 Zoladex implant & Zometa infusion
6/1/14 5.70UG/L 13/1/14 Zometa infusion 3/2/14 6.20UG/L
10/2/14 Zometa infusion
I will have a Zoladex implant and Zometa infusion on 10th March. I then have an appointment with the Oncologist on 26th March when he will introduce me to a new Government trial programme that will last for about 6 months. At this stage I believe the treatment will be a tablet form and I have been advised that there will be fewer side effects than what I have had to endure during the other treatments I have had in the past.
I will keep you more thoroughly informed during the trial period on my progress and effects that this new treatment brings. Hopefully it is the breakthrough that everyone is waiting for.
Sorry for the delay in my updates. I must admit I have not felt like updating anything over the past months mainly due to the multitude of side effects that I have encountered since volunteering to go on the study programme MDV3100-10 which I am still on at present.
My readings are detailed on this update and yes they are excellent though one cannot imagine what damage I have done to my body with these drugs during the past ten or so months and before you ask would I do it again, NO WAYYYYY!!!
I know now that I should have asked many more questions about the side effects etc. of this drug prior to agreeing to participate in the study or there should have been more information provided by my oncologist and/or the organisers of the study. We must know in advance where we are heading. The side effects I now have on top of those I was already experiencing from the Zometa & Zoladex range from daily headaches, constipation, lack of energy, mood swings (everything from being cranky to teary), breathlessness, aches and pains and an overall lack of motivation.
The Zolodex 10.8 started to run out of effect on my PSA levels last year so I felt that I had to do something in an attempt to stop feeding the cancer cells and after conferring with my oncologist I was given the option to go on to this drug trial.
The medications that I have received from March 2014 are:
Zolodex 10.8 - implant every 3 months
Zometa - infusions every month
Trial capsules - 3 per day
To stay on the trial I must continue to receive the Zolodex 10.8 and Zometa infusion plus the trial capsules until otherwise advised by my oncologist or the trial supervisor.
My PSA readings are still dropping and the readings are detailed below from when I started the trial (dd/mm/yy):
20/06/14 15.00 UG/L
09/09/14 0.17 UG/L
04/11/14 0.15 UG/L
02/12/14 0.099 UG/L
02/01/15 0.069 UG/L
27/01/15 0.057 UG/L
24/02/15 0.045 UG/L
24/03/15 0.037 UG/L
21/04/15 0.030 UG/L
As you can see from the readings my PSA is now just detectable.
It will be interesting within the next couple of months to see what effects this has had on my cancer hotspots. The MRI, CAT, bone and bone density scans are all due soon.
Meanwhile all of you hang in there.
I will update again when the results of my scans come through.
Sorry about not keeping my YANA story updated. Mark from YANA has asked me to do so and below are my current results.
I am now into my 112th week on the MDV 3100-10 research study program. My current PSA readings over the past year have held at 0.008 which is excellent or so my doctors say.
I have not had any further scans since I started in this program and anticipate to hopefully have them soon as I would like to know if any of the cancer has been depleted and has not shown up somewhere else.
All of the side effects are still present - tiredness, sore muscles in legs and arms, headaches, sweats etc. as before.
I am still receiving Zolodex 10.8 implants every 3 months (I have now had 18 of these) and Zometa infusion monthly (I have had 36 of these). Now 5+ years on the Zoladex 10.8 and 4 years on Zometa.
I am sure the Zoladex 10.8 implants are doing little to keep my PSA so low. I am pretty sure that the 3MDV Enzalutamide 40mg capsules I take every day are responsible for bringing down and keeping my PSA where it is.
I will again update once I have had my scans which will be soon I hope.
Meanwhile, hang in there and stay well.
Danny's e-mail address is: debdan3 AT bigpond.com (replace "AT" with "@")