I live in Cairns, North Queensland, Australia
April 14 2013
Told I had High Risk, Agressive Prostate Cancer, with a score of a GLEASON 10, at this time inoperable and incurable and need to get my affairs in order. (I was having a PSA check every 6 months)
Started on ADT Zoladex Hormone treatment implant every 90 days, May 18 2015
TURP June 7th 2015
Had 39 days of radiation 5 days a week finished XMAS Eve 2014
Possible side effects of hormone therapy
Orchiectomy, LHRH analogs, and LHRH antagonists can all cause similar side effects due to changes in the levels of hormones such as testosterone.
The side effects that I have are
Reduced or absent libido (sexual desire)
Impotence (erectile dysfunction)
Shrinkage of testicles and penis
Hot flashes, which may get better or even go away with time
10-12 times a day
4-6 times a night
2 years plus and no bloody change😂
Breast tenderness and growth of breast tissue
HAVE GROWN BOOBS,
bloody great lumps under arm pits
Osteoporosis (bone thinning), which can lead to broken bones
Have to have CT Bone Scan every 6 months.
Have bad bone and joint pain which are getting worse
Anemia (low red blood cell counts)
Decreased mental sharpness
SHORT TERM MEMORY LOSS
Loss of muscle mass
I struggle to carry or lift anything
CRONIQUE Fatigue up to 3 times a day, this for me is the worst of all, it is absolutely horrible and comes on with no warning.
I worry people may think I am putting it on, family and friends are fantastic with this problem
Gone from 6.2 to 8
My GP is keeping a close eye on it
I get over it quickly, I give my self a kick up the arse and tell myself to get over it
It is getting worse and need to ask for help, have an appointment 13/11/15
Much better after discussing with Prostate Cancer Specialist Nurse
(I was worried about the Intermittent ADT, no one could explain it to me!)
Some research has suggested that the risk of high blood pressure
strokes, heart attacks,
Death from heart disease is higher in men treated with hormone therapy, although not all studies have found this.
Some people get none or very few side effects, some of us get bloody heaps👀
Then there are the Side Effects from the Radiation
As they had to burn outside of the Prostate, I ended up with radiation burns to my bowel and bladder, I pass a cup of bloody with every motion.
When ever I open my bowel I need to take a shower and always have baby wipes with me, it does not stop there. 10 mins to an hour, leakage has occurred, I sometimes have to shower 3-4 times a day. Baby wipes are my constant companion without them I would give up.
Since 4 sessions of Laser treatment November 2014-February 2015 this has improved and is now Tolerable.
February 18 2016
Due to bad side effects I have agreed to go on Intermittent ADT
PSA is currently 0.08 and has been for 2 years which is a blessing but not unusual
Will have PSA test every 3 months and Bone Density Scan ever 6 months.
I hope by writing this others can see the Life Changing side effects many of us have, I only wish the Medical Fraternity would listen to us and do something about it.
The best way to update you on how I am doing is by posting my sons email.
my Son Daniels email to me
Time to face the facts
Rather than having to explain it to everyone, it's easier to put it all down in an email so we can all understand what is going on. On Wednesday I went with Dad to his appointment at the hospital. The outcome was as expected.
During the appointment we both asked the doctor many questions, I wasn't going to leave there not knowing what we all wanted to know and leaving anything up in the air for assumptions. I wanted the facts and so did Dad, and to the Doctors' credit he was honest, upfront and didn't hold back. Dad knew what the outcome was going to be well before he went it. While the news wasn't good, I could see the smile on his face, a smile of relief that he finally had an answer that he had been waiting so long for and now he had a time frame, now he could make some plans and knows what is coming.
So some facts – For the past month or so Dad's PSA has been 0.08, which is incredibly good. It has been these tests that have confused all the doctors as it's the complete opposite of having cancer. After doing scans, spots were found and as a result a biopsy was conducted. It is from this biopsy that they concluded it was cancer. During the appointment the doctor said he has no doubt that it is prostate cancer and that a meeting will take place on Tuesday 31st May with all the head doctors of the hospital. He said he has no doubt that they will agree with him and his recommendations, but they will review everything thoroughly. Now they know it's cancer, the doctor then said it's because the PSA is so low that the cancer as a result is very aggressive.
We then discussed what to do next. It was evident that the first thing to do is get Dad straight back on Zoladex injections every 30 days. The doctor then also suggested starting oral treatment, 4 tablets a day till the end. You can think of these tablets as a form of chemo treatment, the benefit is Dad can enjoy some quality of life and can travel if he wishes, but not long distance travel for the first 2 months to see the side affects. These tablets are to keep the cancer under control for as long as possible. The Doctor looked at Dad and said he doubts he will deteriorate quickly and that the median for these tablets are for 4-8 months. During this time one of the main side affects will be fatigue.
So after around 6 months it is highly believed the tablets won't have much affect and that Dad will need to start chemo. We didn't speak too much about the chemo treatment and the side affects but I'm sure you all know how difficult it will be on Dad and will restrict him. I'm still hoping he will be able to come down to the Gold Coast for visits then and do some of the chemo, but that's something we will have to see down the track. Dad's immunity system will be very low, and will feel quite ill on occasions. Once again we don't know how long the chemo treatment will help for.
With the tablet treatments and chemo the Doctor said the median life expectancy is about 18-24 months, so some people more and some less. I later asked the doctor if he thinks Dad would get past 24 months, and he looked and me and said that 2 years would be very optimistic.
Since Dad told the news to his closet friends and family there are still a couple people that think he will last another 10 years, and while it's nice to have hope and I really like the thought and pray, I can tell you right now and as horrible a thought as it is and upsetting to me, it's not going to happen. While Dad appreciates the thoughts I can see it bringing him down that others haven't accepted it and is making it harder to move on.
I've lived in denial the last few years, always thinking it can't happen to us and that it's something he will beat, he just has too. But, after yesterday I too have to learn to accept it, it's the best way of maximising and appreciating the time that remains.
Dad has been the most important figure and role model in my life and I know he is extremely thankful to have everyone one of you in his life, he is very grateful to all his friends and family in Cairns that can be there for him. The next 6 months will be the best quality of life for Dad and most painless. If you ever had any plans to visit, I would highly recommend you do it during this time. As painstakingly hard as it is, it is time to start making your preparations to say goodbye. If you have ever wanted to say sorry for something or say thank you, now is the time.
I also recommend: www.cancercouncil.com.au There is a lot of information on the website and even information on things if you don't know what to say.
Mindset changes the days you have, not the number of days you have.
Peter's e-mail address is: peter-renwick AT hotmail.com (replace "AT" with "@")