(Story related by wife, Jean) Terry had a routine PSA reading taken 18 months ago but doctor simply said it is a little high, check it in 6 months. Neither Terry nor I took this very seriously and Terry did nothing about it until a recent visit to the doctor for an eye injury. Doctor suggested further testing. Terry expected everything to be OK, he has no symptoms which would indicate anything wrong.
Doctor called him back explained he was concerned the PSA was rather high and he would like him to see a specialist for an ultrasound and possibly biopsy. We began to think this might be serious but we had no real idea of what was involved. Terry is an active member of Lions and we have had a friend die younger than us from Prostate Cancer so felt screening sounded like a good idea. (As a woman I have had all the recommended tests.) We thought if one catches it early then that is good. That was before we discovered what was involved. I suppose I still think it is a good idea.
We live 7 hours drive from our capital city and had just returned from a weekend at our daughter's 40th birthday, so we decided Terry would return overnight by bus - see the specialist and return the following night, while I continued working. We have two dogs who can't just be left with anyone.
This was our biggest mistake. It became clear that things were not right. Terry dealt with it very well and on the phone he gave me details clinically. (we both work in a hospital environment so are used to doing this). But what threw him most was that he needed a "carer" to go for the biopsy the next day (he felt he was imposing on our daughter and would have done things differently if he had known). This was only because he was given an antibiotic tablet which he may have had a re-action to. Then the Urologist wanted him to remain at least another day in case an infection set in. So it took about 4 days before he was able to return home. This was our worst time so far. I had time to think that this is what life was going to be like if he was no longer a part of it.
He couldn't discuss his feelings as easily with our daughter, she didn't know how to deal with the news or what to say, so she felt stressed. Once he returned home it was easier to talk about it and try to start dealing with it. The Lions Web site didn't seem too helpful at this stage although it was fine once I got used to searching effectively. On the Tuesday he rang and got the results of his biopsy.
He was told that because it was rather aggressive they wanted him to have further tests and another appointment was made to return to the city for Bone Scans, and a CT and another visit to the urologist while he explained all this.
The next day when I went to work I discovered as I tried to explain this to my colleagues I couldn't stop crying, I only lasted 1 hour before I had to return home. Terry was still at work and quite surprised to find me home when he returned at lunch time. The next day was my day off and I was no better so I went to see our doctor and he managed to assure me that Terry wasn't likely to die in the immediate future and that he probably had a life expectancy of several years ahead of him.
He couldn't say for sure but felt it likely the cancer was localised. I felt much calmer and he gave me time off work, he was very helpful. I arranged for Terry to go and talk to him the next day. He explained things to Terry in more detail and sent him home with "Mr. PHIPS No 3". After this I managed to go on the internet and search a bit at a time. While I was still in such a fragile state I would only search for a short while, and sometimes I would have what I called "cancer free" days when I didn't go on. Possibly because of the state I was in when I saw the doctor he decided to have the various X-Rays brought forward. We were unable to bring forward the time to see the Urologist though. Terry made the decision he wasn't going to keep it secret, we thought by being open with the problem it let our colleagues know what was going on and let them make allowances for us and possible we would get more support this way. The first thing I learned was that my friend who only lives across the road, told me her husband had had radiotherapy for prostate cancer 2 years earlier. He is in his mid-70's, and because of working at our hospital I am used to not asking questions about people's health, so when she had told me they were going away for him to have treatment, I had never asked what for.
I found YANA's website and kept reading it as often as I felt up able and relayed all my findings back to Terry. I felt cocooned in my safety zone during this 2 weeks off work and at home. This early stage has been the worst part of the experience so far it has become much better since. We were told of a Motel which has been purchased by the Anti-Cancer Foundation in Adelaide and we booked for one night there.
We left our 2 dogs on the way with the breeder for 2 nights. The idea of having the Bone Scans etc didn't worry either of us. Terry actually found it interesting, they had state of the art equipment and were very nice. The Motel proved to be wonderful. Everyone there was either a patient or carer of someone with cancer. The meals were wonderful and so healthy and everyone was cheerful. It is designed for country people. So we felt there were resources out there for us. We treat this like a mini-holiday. Next door was the Anti-Cancer Foundation and they provided someone to speak with us who asked us questions, how we were feeling, did we need to know anything etc.. They gave us a leaflet outlining a scheme to link you with a support person if necessary. Terry contacted them again from home and he has been given a support person who has had his prostate removed 2 years ago. This man is impotent up to now but not incontinent. They also had a new book available Free of charge, dated December 2001, called "Localised Prostate Cancer", which outlines the situation very clearly.
We went to our daughters for a night after picking up the dogs and we picked up the films but preferred not to read them at this time. I felt they couldn't give us any good news nothing was going to change the diagnosis they could only confirm the status quo or offer more bad news. We decided to bring them home and take them to our own doctor and hear what was on them in what I was beginning to feel was my "comfort Zone". I hadn't at this time returned to work and was still feeling pretty fragile.
Terry was fine with it all. His attitude has always been "there is nothing you can do to change this, lets get on with it, deal with it" There was no evidence that the cancer wasn't localised in the prostate so as far as one could call it such, this was good news.
I returned to work and gradually began to cope with it all. I did more work in reading the various stories and learning more about what we were dealing with. I'd pass on what I found to Terry. We talked about the various treatments and what we could expect. You are left in no doubt that you should prepare for the worst outcome and hope for the best. So we have discussed this and feel we can deal with the problems as they arise. We have both valued the time to learn more about this and not having to rush into life changing decisions.
At the end of June we once again went back to Adelaide stayed two nights in the Motel, left our dogs and visited 2 urologists for their opinions and to learn as much as we could about what to expect. Both agreed that with a PSA of 15.9 which has doubled in about 18 months or so and a Gleason reading of 7 that Terry has a more aggressive cancer but one which seems to be localised in the prostate and should respond to either a radical operation or radiotherapy. Of the 6 samples taken in the biopsy only 1 had definable cancer tissue but this was grade 7. A minute spot too small to define was detected in one of the others. I felt encouraged by this.
Just a few days prior I read an article written by Ron Gellately entitled "is your prostate operation necessary". Until this point in time I hadn't doubted that it probably was or even questioned it. I asked the urologist if we could try diet etc and was it OK to wait a bit longer and he was quite happy to agree. We both thought it would be good to get another PSA reading before rushing into anything. He showed us a book he had written by Charles E. Myers. called "Eating Your way to better health". I've managed to acquire it. So currently I have been assigned the role of researcher and Terry is the chief cook.
Terry used a plastic sleeved folder and stored all his information about his Prostate cancer in it and details of all his visits etc. I've acquired another folder and I have created a page "our plan of action". This includes details about foods which are known to be specifically helpful in fighting prostate cancer. I'm also keeping all the details I can find about some of the foods their vitamin content etc from magazines I have been able to borrow from the library. I've added to this the story of Terry and Anthea from the YANA Journal. He is the only one I have found so far who has stuck completely with diet and lifestyle changes, most of the other stories I have read have generally had some form of radiotherapy as well as diet and supplements. I have written to Terry and we have exchanged a few emails.
I've printed out an article Management of Prostate Cancer by Charles E. Myers and have written and received an email back from them. When I hear My Terry explaining the situation (as he did this afternoon to the dietician) I can see he has a pretty good grasp of what is involved and what is going on. At the end of the day whatever he does will be his decision, I am only here to provide him with all that he needs to make an informed decision and then support him as needed.
He currently is going to have another PSA test in September and re-evaluate. He has been told that at 62 and in good health he has all the options open to him but after 65 they are not keen to perform the radical operation. He is currently expecting to have this operation either later this year or early next depending on the PSA tests. We have both appreciated not being pushed into any decision and have felt there is much support available now for people in our position.
We can see how much this has changed in such a short space of time from the experiences in your stories. We can also appreciate that it is a very personal decision based on ones personal circumstances. I suppose Terry is fortunate in that he is in a stable long term relationship. We have been married 42 years and still have a good relationship. The decisions would be different if a man was just starting a new relationship for instance. Please email us if you think we can be of specific help in any way. Jean Spence
Terry SPENCE is now 63 with a PSA of 17.8. His current treatment is diet, vitamin and mineral supplements and exercise. Known as Watchful Waiting
Terry's story update: Following the initial diagnosis we started to fine tune our existing diet to become mainly vegetarian with regular input of fish in diet. The September PSA came in lower at 14.6 but the last one in December was 17.8. We are not sure what to make of this so are waiting to see what the March PSA tells us.
Terry is now taking half a teaspoon of liquid Selenium daily 200mcg equivalent and intends to start on Trinovin tablets shortly (Red Clover). Terry still has no symptoms of any problems with his Prostate and is in good health. He has lost a small amount of weight and is quite relaxed. He is not thrilled about any of the other options for treatment on offer. He is great with the diet and vitamin pills etc.
The quality of our life has been good for the past 6 months so don't regret the decision to spend time trying to find a better solution.
Terry had a PSA test in June 2003 just 12 months after diagnosis and this was 20.5. The PSA had increased by 25% in the past 12 months and it doubled in the previous 18 months so I feel we had slowed it down. However a PSA of 20.5 was too high to ignore.
It took a further 2 months before we could see the urologist and the tumour had grown the specialist thought it was still localised, but he upgraded from T2 to a T2 possibly T3. The Bone Scan was still clear and there was an improvement in the shoulder, so alternatives have helped this.
September 1st was the planning day, and September 16th Terry starts EBRT for 7 weeks. We feel comfortable about the decision given the statistics he was faced with. He was never comfortable about the idea of an operation.
Terry's PSA readings are 13 April 04 - 6.02 and 2 January 04 -9.06 and the last one taken prior to radiotherapy in September 03 was 5 June 03 -20.5 so I guess it rose higher than that by September.
His experiences with radiotherapy were very good. He didn't have any Bowel problems and only experience an urgency and burning sensation on urinating for about 2-3 weeks and this was dealt with by using a product called URAL (a fizzy powder to make the urine more alkaline I think.) Some Cranberry juice and the urologist prescribed a tablet to calm things down a bit. I bought some pads but he never needed them. We worked out where all the toilets were and he caught buses and trains and went by car to the railway station without any problem. The Clinic was efficient and really good. I think he actually enjoyed the time down there. He has never had any further urinary problems since. He had 3D Conformal Beam Radiation. We have heard equally good reports from others at this clinic.
The Radiologist believes that because of the good decline in numbers in the first 3 months that it was still confined to the prostate. The Urologist had felt it might me but possibly might not. A bit borderline by this stage. At this point in time if Terry had to make the choice again he would probably be happy to have this treatment and would probably have had it 6 months earlier. There has certainly been no loss of quality of life in any of this. He didn't have any symptoms before the treatment, without the PSA readings he would not have known about the cancer.
If you need any more information just ask.
Terry's PSA was great it has halved again to below 2 now. which is good given we started with over 20. He has an appointment with the urologist in February. They told us to make it in 12 months after he saw him last January.
The PSA has continued to go down and last October it reached less than 0.10 ng/ml (0.73 ng/ml). Terry has had no problems until December when he had his first UTI (Urinary Tract Infection) episode. This was quickly cleared up with anti-biotics and the suggestion he drinks more water. He takes Cranberry and Vitamin C tablets and we still drink Green Tea and try to keep to a healthy diet. He is retired now and last July we went on an extended caravan holiday into Queensland and arrived home in November.
We hope to go again and travel further North this year. Next PSA is due in April as Terry was advised to delay after the UTI because that would have raised it. We are only allowed 4 free tests per year and the urologist had suggested we only needed to have 2 unless concerned.
Terry's PSA was 0.60 ng/ml this time, down slightly. At this level less than 1.00 it doesn't make a lot of difference but it is good news and reassuring.
There is no change. The PSA remains less than 1 and we are only getting them at 6 month intervals the last one being April 2007. The only problem since treatment was a small amount of blood in the urine about a year ago which quickly cleared up with anti-biotics and no problem with urinary, bowel or potency since. We are about to set off once again on our retirement Winter holiday, this time round Western Australia to Darwin and back to Adelaide. General health excellent.
We are on our annual travel and are currently in Fitzroy crossing. Terry hasn't had a PSA for some time can't recollect exactly. He should have checked up before we left but didn't. He currently has no problems which are prostate related i.e. urinary, bowel or erection so I work on the assumption that things are still OK.
He has trouble at the moment with an inflammation on his knee as a result of climbing in and out the caravan and I have a bruised hip from falling down at Robin Falls whilst taking pictures. Other than that we are doing OK.
Terry had his routine blood test (they have him down to one per year) and it was good. There is no indication of any recurrence. He doesn't have any problems with urination or bowels and there is no ED. I can't see any problems as a result of the cancer. Terry had his 70th birthday in November and all his results were good, at this moment in time he is healthy.
We both watch our diets and try to eat sensible, healthy food. He has taken Lyprinol® which is a NZ Green Lip Mussel extract daily for years. It seems to help the ligaments and whilst he had trouble with his knee a couple of years ago with physio and the Lyprinol he doesn't have any issue these days. Years ago when he was first diagnosed he had a bad shoulder and I saw the damage on a scan and a year later it was totally cured so we think the Lyprinol worth the price. It is a natural anti-inflammatory and whilst they gave up on tests they did believe it was helpful in reduce inflammation in the prostate.
Thankfully both Terry and I are healthy. I am happy to be on the programme, occasionally someone writes for help and it is good to be able to offer some.
Terry still has a good PSA no further problems in that department. We are heading off for a few days in the morning so haven't time to deal with this just now. Will contact you next week.
We are back from our trip and Terry asked the doctor today what his last reading was. The reading was about Nov/Dec 2010, I can't remember but it is fairly recent, the doctor only likes to test once a year unless there are indications to do otherwise. It is less than 1 and he said 0.79, Hope that is helpful.
He has no other medical issues and is keeping well. We keep an eye on our diet and try to watch the weight.
From time to time we get people write to us from reading the Yana site and we always respond.
There have been no further blood tests and nothing has changed in general health. Still active and enjoying life. No idea what the PSA is but I think this was the last reading was about 0.70.
There is no difference, stopped bothering with PSA tests so don't know numbers. Still feel active and healthy.
Recently had blood in urine but all tests proved negative, PSA normal and concluded that a camping trip had resulted in drinking too little water, Taking Lyprinol New Zealand Green Lipid muscle anti-inflammatory and have taken this over 10 years. Golden Glow Extra strength Cranberry tablets, and recently we all had a bone scan with a mobile unit and Doctor suggested I take a Calcium supplement. Otherwise no problems.
[28 July 2014 - Sadly, we were notified by Terry's wife Jean that Terry died 15th March 2014. It had nothing to do with prostate, he developed a rare bone marrow disease which destroyed all his vital organs and he died within a week of diagnosis. He didn't have cancer and the prostate was not an issue. He wasn't in pain and although they said it was fatal (they had only one other case in 10 years in RAH in Adelaide) they were trying to get him well enough to survive a couple more months, so he didn't actually know he was going to die within the week. He was in good health and not taking any medication. So there are positives in this. I am still trying to organise my life and tackle one problem at a time.]