New to this changed life. I was diagnosed with prostate cancer last week and have been going through the stresses, fears and mood changes.
I guess you guys know all about them. I will be OK for a while then criticize my wife or say something snaky because of the way I feel. This is not going to help anyone and I need to pull back. This forum looks like a good place to learn how to cope. My problems are only minor from what I see from a quick look but I tend to project and expect the worst when my mood goes down. It is pretty low most of the time at the moment as I am coming off testosterone which I have been on for 30 years for osteoporosis so I feel depressed and anxious. From the reports so far I do not need immediate treatment but the uncertainty is something I am going to have to learn to live with because everything is uncertain from now on. I have to admire the way some of you guys stay so positive and hope my fearful and anxious moods will resolve as some time passes.
This is cetainly a good place yo express the fears. We all have them and we all live with the uncertainties. I have often taken heart from the wonderfully inspiring people whom I have "met" here.
I've been living with prostate cancer for twelve years now - mine was the type that needed treatment fairly urgently, needed more treatment four years later and then still came back. So I have been on hormone therapy - or rather anti-hormone therapy since then. It's politely called Androgen Deprivation Therapy. Now if you don't need treatment and things can just be monitored, that's fine, just monitor. However, if you have had a problem with osteoporosis then you do need to talk to your specialist about that and see if you can get on to appropriate medication for that.
I have several friends who have been on active surveillance for ten, twelve, fifteen years. They plot out their PSA's n a chart, take it round with them and show it to anyone willing to listen. They are all engineers!
Yes when I come up to the time I am due to have tests I am difficult to live with. Part of that is that you are coming off the testosterone supplement. Tell your wife that you are going through menopause!
I hope I do not have to have ADT. From what I know and have read it makes for a poor quality of life. Do you find it that way? I guess you have no choice?
I am not at all happy with the idea of Active Surveillance. It is hard to tell if it actually spreads beyond the prostate so we are playing an informed guessing game. If mine has not spread beyond the gland I would prefer to radiate or have it out in case it does.
I am on bi-phosphonates for osteoporosis. If I cut back on testosterone I could start loosing bone again. I would like them to just keep me on the lower level of the normal range of testo. and treat the cancer. Also I have been on morphine type drugs for years with vertebrae fractures and chronic pain. If I have an operation and they stick to their protocols for pain treatment for prostate operation I will go into withdrawals,stuff up their operation and really suffer. I have an appointment with the pain specialist next month and I hope he will agree to keeping the pain meds at an effective dose. I have always been very compliant regarding following dose instructions with these drugs.
Do the early stress levels improve? My wife is also stressed so I hope it improves for both of us.
Let's get practical -
Firstly, get hold of a copy of "Localised prostate cancer: a guide for men and their families". You can get this from the Cancer Council by 'phoning 13 11 20 and asking them to send it out. Or you can download it from the educational resources pages of www.prostatehealth.org.au. At this back of this are some tables, or nomograms. These are based on extensive studies over many years and by putting in your PSA, the stage of your cancer and your Gleason Score you can tell the probability that your cancer is confined to the prostate capsule, has spread to local surrounding tissue or has become metastatic.
Secondly, it is important to remember that for most people prostate cancer is very slow growing, so active surveillance is the best option in the early stages. How do you know if your cancer is slow growing. Monitor your PSA over time and see how much it is rising. If it is rising rapidly, that the time it takes fro your PSA to double is less than three months, then you have an aggressive cancer and may need to treat. If it is between three months and a year or so, then just watch for a while. If it is more than two or three years, don't worry.
Thirdly, whether or not you should consider any treatment such as surgery or radiotherapy depends on your age and current state of health. Many specialists will not offer surgery to anyone who does not have a normal life expectancy of ten years - the side effects are not worth it. Radiotherapy is a possibility, but again the side effects can be significant.
You need to discuss all of these with your specialist and do not be afraid to get a second opinion. Whatever you do do not get caught up in any rush to treat.
Thats the basics. I will check the table at the beck of the book.
I have had urinary hesitation for years which seemed to be related to my pain medication but at one stage it got worse without a change in medication so I am not sure. I do not want to have a rushed TURP and the have to follow it up with a radical prostatectomy - much greater chance of doing some damage. Also I heard urinary hesitation is a contra-indication to radiation which if I have any treatment this is what I would prefer at the moment.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.