I am glad I found this site which I think is great and a must for us with prostate cancer and I hope my story will help someone.

I had a PSA test due to a change in frequency of urination. The result was 30 and so I had a hospital appointment with a urologist and a physical rectal exam which and he said there was a hard area on my prostate. A further appointment was made for a biopsy. At this point I had no other symptoms and my frequent urination had returned to normal for me. Up once a night and going every 3 hours during day.

I have tried to keep fit, have a healthy diet and never been I'll that I can remember. I tend to deal with any minor health problems I ever had by using natural methods and sorting myself out. I think Ignoring the cancer diagnosis and going my own way was also at the back of my mind. I read as much as possible on the subject both medical and non medical and am still reading. That was how I found this site in the first place. Anyway on with the current situation.

This is where things get complicated as I am full-time carer for my wife who has Alzheimer's disease. She is physically fit but her mind has shut down and relies on me for everything from going for walks to making a cup of tea and some personal care. There are only us two and if I was ever incapacitated she couldn't even make me a cup of tea. Twice I declined biopsy and eventually was offered scans. I had a full body scan which showed areas of interest around the prostate and pelvis area and then the MRI which showed the cancer had escaped the prostate and there were areas in the pelvic area. I was still fit and well and no symptoms.

It was decided after discussion with oncologist and my urologist that I would start ADT bearing in mind my home circumstances. So in September I started on Cyprostat tablets for 28 days and then after the first 7 days had my injection of Triptorelin which was painless. The treatment had begun. I will follow up with my experiences and side effects of the treatment and what other things I am doing to hopefully help myself shortly. I didn't want to make this first post too long so bear with me. Thanks everyone.

I have now been on the ADT for about 6 weeks now and I suppose have had an easy introduction to the treatment. Though there are side effects none are drastic or interference with my everyday life. Before starting treatment I felt fine and never felt better. The first thing I noticed on treatment was that my urination pattern changed from every 3 hours plus and once a night to every 2 hours and sometimes less and having to get up 2 or 3 times a night. My doctor thought maybe it was the cyprostat and once that course finished I would improve. Wrong, still 2 hours sometimes a bit longer and twice at night. She also said that normally urination improved with treatment as did a specialist nurse I spoke to. So having an enquiring mind I am trying to put 2 and 2 to make 5. Still looking for answers.

Other more common side effects are mild. I get some short spells of light sweating, usually after breakfast and sometimes during a meal but no BSD feelings or problems. Loss of libido is progressing but not a problem.

The only other thing I am getting which may be more worrying is some cardiovascular irregularities. I am reasonably fit for my age. Have had a hiustoiry of distance running and still jog 1/2 hour twice a week and have a fast walk daily which includes a little jog uphill. I do a session of stretching yoga type exercises daily and since being diagnosed have added.

Before the treatment and over the last few years my BP has been on average about 124 over 68 and pulse of 60. Now the systolic BP is variable in the morning and often in high 30's once in 40's and once 151! I also get slightly dizzy after sitting a little while and then standing and moving off. Also when running up stairs. I could do that easily before the treatment so it is a side effect. I have no problem during my jogging for fast walking.

Anyway I am speaking to my cancer doctor about that and have an appointment with my GP this week. As I have felt so good before starting treatment this sort of side effect is more troublesome to mne than the cancer. I have been quite relaxed about that and it hasn't worried me. Mind you I don't get much time to worry with my carer's work which is full time.

One final thing here. I have nothing but praise for the friendly and caring doctors and nurses etc. I can contact them any time and they are great.

I will keep up to date withany further news on my CV side effects and anything else.

Further to my last update side effects are the same but generally I am feeling fairly well on the treatment. The main concern if I can call it that is the CV side effects which make my blood pressure all over the place. I can have a systolic BP of 150+ when I get up and half hour later it is low at 109. When low I can get a dizzy moment when I get up and my pulse which is normally about 60 can be 70 - 80. Most mornings it is not in the fifties but the high 30's. Until my treatment started I had roughly the same BP readings over the years. Low 120's over 70 and pulse around 60.

Anyway I saw my GP last Thursday and he checked things over took BP etc and said the problem may improve with time as my body adjusted to the ADT. He checked my records and I had no blood test results for things that may be affected by ADT. Cholesterol, lipids, etc. So if the treatment affected my systems there were no starting points to measure any changes from.

So blood tests done for cholesterol, triglycerides, blood sugar, lipids, kidney and liver, thyroid, bone density. I am not sure if that was the lot and then to see how treatment was going my PSA was also done.

That was the good news. The results were through today and all tests were good and my PSA is down to 1.2!! I also spoke to my cancer doctor today who was also pleased with results so soon after treatment began about 8 weeks ago. As for the BP problem she suggested I perhaps get my BP monitored at my surgery and keep up with my exercise routines, even when you don't feel like it, which I think help with both side effects and treatment.

I see my cancer doctor next month and have vmy next jab mid December and will keep you up to date with any news. I hope this helps and encourages anyone in a similar position to me and feel free to email me any time. Good luck.

This is Laurence with the latest news on my ADT and thoughts. First a good new year I hope to all those with prostate cancer. I had my second injection of tripterolin on 17 December 2015 and saw my cancer specialist nurse on 21 December 2015. I had had a blood tests in November and my PSA had dropped from 35 to 1.2 in about 7 weeks after starting treatment and the latest on 17 December was a further drop to .7 which seems to please everyone. I am one of the lucky ones who is getting few side effects and can carry on more or less as normal. Though I still have more frequent urination than before I started the treatment.

I am now seeing my cancer specialist nurse every three months and it seems I am now left to just carry on and wait for something to happen to change things. I am not sure I am very happy with that and am going to see if I can get to see the oncologist with my ever longer list of questions. Though first I will speak to my cancer specialist nurse who is very caring and supportive but I am not sure how much she can answer about the technicalities of the way ahead. Things like how long before the treatment stops working, hormone insensitive cells and so on. I know that some men go for years on this treatment but I am not the type to sit doing nothing and just wait to see if and when the advanced cancer gets more serious. I also have my role as carer to my wife who is in late stage of alzeimers disease to think about. Looking after her and keeping myself fit with exercise and diet doesn't give me any time to worry about the cancer too much but I still want answers.

If any of you out there have any experience of what lays ahead while on ADT feel free to email and I will reply to all emails.

I also have my

My name is Laurence and this is my latest update though NJ ot a clot of change at the moment. My last round of blood tests in January were good and PSA down a little more from .7 to .5 so still progressing.

I am still caring full time for my wife who you may remember from previous posts has dementia. This is getting worse although physically she is about the same her mind has deteriorated. I manage to fit in some exercise at home and grab 30 mins first thing for a fast walk and also go for a run twice a week. This seems to keep me going and fit to cope with being on the go from when we get up until going to bed. No time to worry about prostate cancer.

Things may change soon though as I saw one of my oncology team last Friday and have chemotherapy to consider. They are happy with my progress and my fitness. I have some cancer outside the prostate, one part on breast bone, another on the lumbar area of spine and some signs in pelvic area next to hip. None have symptoms or bother me so I don't know they are there.

I have been on ADT for six months now and am being offered chemotherapy as a result of new trials that seem to show that introducing chemotherapy early in the ADT treatment gives a longer lifespan. As you probably know chemo was normally given when hormone therapy had failed and by then there wasn't much hope.

As with all these things, trying to work out what is best is complicated since we are all different. Treatment would be with docetaxel (taxotere). At the moment I have no real side effects that affect quality of life. Although the ADT could become ineffective in another 12 months or so it could work for longer. Five years or more. Then if ADT lasts that long is that longer than the projection in the trials results which are probably based on average figures. I am 71 this year and if ADT works for me for 5 years or more as it is now should I change things. Chemotherapy has its own side effects although again that is different from person to person.

I am still loath to do more than I need with conventional medicine as I try to follow an anti cancer diet including veg juicing daily, and the quark with flax seed oil, but nothing extreme there.

Any experiences with docetaxel would be gratefully received. I am not looking for an answer as I make my own decisions but your stories are always welcome and helpful and give the other side from the medical view.

It is some months since my last update and not a lot has changed. I am now on my 6th 3 monthly injection with triptorelin and my PSA; remains around .5 to .7 and side effects are manageable up to now. The constipation that has crept in over the last few months is now getting worse. I know what I should do to help but to no avail and have to resort to laxatives. I am blaming the hormone therapy. Has it affected muscle action or the amount of fluid getting into the system? I am not happy about it . Has anyone else found this side effect.

I am seeing my GP on Friday 23rd December about blood tests and will quiz him further. I am also asking about getting dihydrotestosterone tested in my next blood test. I understand it can have some bearing on the cancer severity.

I am trying to manage my advanced prostate cancer myself as I seem to have been left to it here in Scotland. I am being overseen by a cancer specialist nurse who I see every three months and this may be stretched to six months in the near future. she is very caring and all that but I just get referred to the GP for any medical matters. Then I don't see the same GP so I tend not to bother. I have only seen an oncologist once when I asked to see one. I have just asked the specialist nurse to arrange another meeting with the oncologist. She has stalled me and said we can discuss that and what I want to know at our next meeting.

I generally feel I am left to my own devices. I have to plan my own injection get the prescription, make my appointment and take it to the surgery and give it to the nurse who then injects. i wonder what would halpen if i forget to do this. Is anyone watching my records etc. is it flagged at all. I think I am left to carry on until the hormone therapy stops working and that's it. What are others experiences? Do you get better service? Is this the norm or do other areas have different procedures. I would be interested to know.

That is where I am at at the moment and once again thanks to all at YANANOW for your own experiences.

It is quite a long time since my last update but during the last 2-1/2 years not much has changed that was newsworthy. I had my regular 3 monthly injections of Triptorelin and see my prostate cancer nurse around the same time. I also have full blood test at the same interval. My PSA has stayed just under the 1 varying around .7 or .9. Though the last 2 have risen slightly to 1.2.

My side effects have been generally manageable. As well as the lowered libido and hot flushes I get fatigued which catches up with me in the evening. I had increase in my frequent urination after starting the hormone treatment but though a couple of treatments were tried they didn't work. Again I manage and it doesn't really interfere with my lifestyle. It is just inconvenient.

During all this time I only get to see the nurse. Since being diagnosed I have not seen a consultant or doctor but am assured my case is regularly reviewed. A few months ago, after nearly 2 years, I wanted to discuss my original bone scan with someone and have a second scan. My original scan had shown spread to the bone including hip, sternum, lower spine. Some were only suspicion of tumour and i wanted to get that clarified. I had learnt that if it was a tumour it should have shrunk with treatment but if it was something else such as arthritis it would still be there. Being the type of person I am I wanted to know. Anyway there was strong resistance to my request as while 'nothing was wrong' as shown by my PSA etc it wasn't protocol. Others agreed with my view including my GP and MacMillan nurses. The GP even wrote supporting my request. Still nothing then suddenly I had an appointment for the bone scan in August at about 10 days notice. Well I got good news!! There is no longer signs of spread on the latest scan. Finding that out has made me more accepting of the treatment. How often do others get to see a consultant or is it like here that you don't see one until your cancer returns.

I have only had hormone treatment from day one due to the high PSA at diagnosis and think myself perhaps fortunate I haven't had to go through what a lot of men have to put up with. Though I work hard at keeping healthy. I try to eat as healthily as I can and exercise going to the gym 5 days a week plus walking and the occasional run. It is hard work and time consuming but I am lucky enough to have the time.

Now looking ahead I am thinking of the longer term effects of ADT including cognitive problems. If you have seen my earlier posts you will have read that I was also carer for my wife who had Alzheimer's disease. Then I get my cancer diagnosis. I have been carer until last April when due to continuing deterioration she had to go into a care home. Not ideal but it is a specialist unit and the staff are great. I go in most days and am part of the unit almost. I stay for lunch sometimes and my wife is look after and cared for.

Anyway back to cognitive problems. After nearly 5 years of seeing my wife's slow decline and the symptoms I can see small signs in my actions. Just now and again and of course I could say it is just old age. Forgetting things putting things in the wrong place etc. But one little thing made me think. I had a can of beans to open so went to the drawer to get the can opener. I put it on the tin and realised that I was about try to open the can with a cork screw. Funny I know, and I put the cork screw away and got the can opener. Old age again but being on ADT made me think. My wife did some things like that but after a while the next stage came where she would do something wrong but not know how to correct herself and so leave it and walk away.

I don't worry about it just as I have never worried about cancer really. I am not the worrying kind and just get on with things and life. Though my final thought is that I will seriously consider stopping my cancer treatment if I thought I was getting dementia. After 5 years seeing my wife go down hill and others in the care home, I would rather face the cancer.

Well that's my update and thoughts for today and a bit long winded perhaps. Feel free to email me on anything I raised.

It has been a long time since my last post. There is always something to say about prostate cancer but life seems to have drifted on with not much changing. I have intended to add bits and pieces but it did not seem too important. Anyway time to update and get things off my chest.

My 3 years on hormone therapy continues but at what cost. I have the same external symptoms that most of us suffer to varying degrees. Hot flushes, fatigue, loss of libido, weight gain despite daily exercise and trying to eat a healthy diet and more frequent urination. My PSA is still relatively low but the last blood test in January this year showed a slight increase from 1.2 to 1.8. Before that it was.9 so it looks as if it is rising slowly now. Next blood test due shortly so will keep you posted.

Not significant it seems as nothing was said to me about it. At least no one contacted me to mention it or re-assure me. You may have gathered from recent posts that I am a reluctant patient. Before my prostate cancer was discovered during a routine blood test which showed the PSA 32.2 I wasn't ill. Never had been and in fact I felt, at 69, as well as I had ever done. I was then put on Triptorelin after scans showed the cancer spread to bones etc. I had a Cancer Specialist Nurse who was good and I could ring her or email her and get a response within hours. Despite the side effects I was doing ok and every one says how well I look.

I have always been aware of the long term problems with hormone therapy and try to anticipate what may happen and prevent it if I can. That's me, trying to pre-empt things so I can prevent them happening. A losing battle probably when on treatment. Would stopping the treatment be the only means of avoiding the more serious long term affects.? No one seems to want to discuss these issues anyway.

Side effects like cardio vascular problems, kidney injury, osteoporosis and metabolic syndrome are things I feel should be addressed and patients made aware of them, not wait for something to happen and then deal with it. It is probably too late then. If I mention any symptom I just get told that if I am worried about anything go to see your GP. If you can get an appointment that is. 5 weeks to see my own GP.

I seem to be left to my own devices, am now only having a routine clinic every six months and don't even have a Prostate Cancer Specialist Nurse. The one I was seeing left and the prostate clinic was taken on by the Urology clinic and the direct personal; touch lost. More consequences of NHS cuts probably and reliably informed.

Any request to see a specialist or get something extra done are discouraged. I felt I wanted a second bone scan after 2 years as a few of my bone tumours were diagnosed as suspicious. But no not protocol. I was doing ok as my PSA was low and stable etc etc. I did get it in the end after pushing and my GP who is ok adding his support. The scan was done and was actually good news in that there were no longer any signs of bone cancer. So it was worth getting that from my point of view as it showed that the treatment was working.

Things are now moving on and some time ago I started getting another symptom. Feeling giddy and out of breath when out walking and coming to a slope or steps. When I get to the top I sometimes get the symptoms. I have now had ECG, Treadmill ECG test and a heart scan. The ECG printout shows some anomaly with my heart rythm. I am now having an angiogram as my pulse, blood pressure results are good and the heart scan showed my heart was strong and healthy. I have just had the angiogram now and it went smoothly and as always nursing staff are great. The result was that my blood is flowing freely through the arteries and heart and all ok from that point of view. In fact the doctor said he wished his arteries were as good.

What then is causing the breathlessness and giddiness is another matter. I will be seeing the cardio in due course to discuss the angiogram results and what else it may be but I doubt any mention of the possibility it may be caused by the hormone therapy will be put forward. I will though raise the matter as there area possible side effects from low testosterone that can cause arrythmia and conductive problems. Where do we get answers to these problems.

My preferred choice would be just stopping all treatment and going back to the position I was in 3 years ago. No illness, no signs of cancer that were evident without that blood test, still no physical outward signs of cancer, no side effects from treatments etc, etc. Have I the courage to go down that path. I am not sure as there will be outside pressures to be sensible and doing this will shorten your life span. I am still young they tell me at 73 and appear healthy and fit despite the treatment.

But my personal life has changed. As you may know I spent several years caring for my wife who had dementia and over the last year spent a lot of time in the care home she was in and finally passed away peacefully at the end of January. I have never felt I want to reach the stage where I am in a care home despite the wonderful care given to my wife and the length of time I visited and stayed with my wife. Living a long life whatever the means is not something I want. I would rather have a shorter period living free from medical matters than years of medical problems and deteriorating health and no control over my life. Maybe it is too late. The damage is done. I live alone and have family but never been physically close as my career etc took me away from home at 16. I know many have close family ties and you don't want to upset them by shortening your life needlessly, but are they going to actually care for you or is it the care home. I have just put this out there to see if anyone else wants to raise the topic. I think it is a topic we don't discuss but it is part of serious illness and perhaps we need to be more open about these things. Feel free to contact me using my e-mail address below.

I will keep you posted on this and other matters. I have my next prostate appointment at the urology clinic in a couple of weeks and blood tests including the PSA. Interested in seeing if it is still on the rise. I want to ask to see an Oncologist as well since I have never seen one about cancer matters. Specialist nurses seem to be the only contact here in Scotland so no doubt I will have to push for that as well. Meanwhile live life to the full and make the best of life. It is your life.

A long time since I posted on here and my apologies. A lot was going on in my personal life and my advanced metastatic prostate cancer was unchanged and treatment remained unchanged. Three monthly injection of Triptorelin kept my PSA in check. If you saw my previous posts I was carer for my wife who was declining with Alzheimer's disease. I cared for her and myself. Sadly she worsened until in April 2017 she went in to full time care. I spent most days visiting until the end came in January last year.

During all this time my cancer took a back seat. Though I had been told it was terminal and incurable, other than side effects from the treatment I had no outward signs of the cancer. I remained reasonably fit and well, exercising, walking and occasionally jogging. I was living in Arbroath, my wife's family were there. I was unsure what to do now I was on my own though i had her family and other friends etc. I visited my family and friends in England. I had brothers in Lincolnshire and my son was in Bath. Then my nephew made up my mind for me in a way as a cottage next door but one to him was available and the garden backed on to a river. My brother's and others lived in the area so I moved. And haven't regretted it.

I hope I have not bored you with this background update but the cancer update is coming and that is very much a part of the story. After moving in I arranged GP etc and referral to Urology for my cancer treatment etc.

Going back to my original diagnosis in Scotland, I was diagnosed in 2015 after a GP checkup found a PSA of 35. Referred to Urology in Dundee and a digital rectal exam confirmed the probability of cancer. The consultant wanted to do an immediate biopsy but I refused as i had carers with my wife on a fixed time. He wasn't very happy but I expected an appointment for the biopsy shortly and I would have had time to make my arrangements. As it was I never had the biopsy and had MRI scan which confirmed the prostate cancer and spread to seminal vesicles and ECE plus some bone spread and other suspicious areas. I was then given an appointment and saw the specialist nurse who told me they had decided on the hormone therapy and that was it.

I carried on as "normal" caring for my wife and myself. Obviously family and friends were upset by my diagnosis. I saw the specialist nurse in clinic every three months and managed my side effects from treatment. After a couple of years with nothing happening and not seeing a consultant I asked about seeing an oncologist to answer my cancer questions but not done unless my condition worsened and I need further treatment. Never saw an urologist either. I had questions about the suspicious bone tumour spots and asked for a bone scan. Initially that was a no as my PSA was under control so that was all that mattered. I did push for that and even had my GP support. So in July 2017 I got my bone scan and the results said there was no signs of any bone cancer spots. Good news perhaps. I queried why the difference and was told it showed the hormone therapy was working and carry on as usual.

That was more history and now to the news. I saw a new Urologist here after moving to Grantham. He was very interested in my case and open to discuss things I brought up including my questions on bone cancer etc. He even asked if I thought I actually had cancer. Anyway he said he would get all my old scans and reports from Scotland study them and discuss with his team. Then decide if I should have further checks and be possibly be transferred to oncology here.

His resulting letter after his check of my history said that I would be having a new MRI and transferred to Oncology and his actual words were that he was doubtful whether I ever had metastatic bone cancer!! A shock but I suppose good news. I was then given an appointment with Oncology and he discussed this new possibility and he also would study it all further and he arranged the MRI. That came back and showed prostate cancer and seminal vesicles and no further spread. He also agreed that I probably never had bone cancer and is proposing radiation treatment at some point.

That is where I am at the moment. But it also throws up all sorts of other questions. I had had the news that my cancer was terminal, my family were very upset etc and to my mind it was the PSA being treatnent and not me.

My new consultant was surprised I was never offered a biopsy. The original diagnosis letter had mentioned having one at some point. The bone cancer should also have been further reviewed sooner as some area orginally mentioned was an area where it was very rare for it occur. The bone scan showing no signs of bone cancer should have also brought up further questions.

All in all a mess and even a mis diagnosis???. It makes me question any medical advice and am still uncertain what course I will now take as a result of the past care or rather lack of it. Both my own health matters and any complaint or legal action. If the new diagnosis is correct and radiotherapy is now the treatment planned I could have had that a long time ago instead of 4 years on hormone therapy with no future.

I think we all have to do our own checks and ask other opinions and not just go along with what the so called experts say. It is your cancer and life and it is your needs that matter and don't take no for an answer.

Good luck

It has been a long time since I updated and a lot has happened in the last 2 years or so. I will bring you up to date and maybe some of what I tell may be of interest or use to someone out there.

As you will see from previous posts I was diagnosed with advanced metastatic prostate cancer in April 2015. And told it was incurable and terminal. 5 years ago now and at that time I was also carer for my wife who had Alzheimer's disease. I never had a biopsy as when at the hospital for the initial diagnosis I was not told that I would have one there and then if the digital rectum exam confirmed the PSA which was 32+. I had to get back to relieve the carers. Anyway I then had full diagnosis after scans. You can read more in the older posts about how I faired in Scotland.

So I was put on triptorelin and carried on as before until my wife had to go in to care towards the end and passed away in January 2018. A few months later I moved from Scotland to England, nearer my family and as a new patient was referred by my GP to Urology for review.

That was when things took a surprising change. After hearing my story including no biopsy follow up nor seen by the consultant again. Just the 3 monthly visit to the nurse and the fact I had had to fight for a second bone scan which showed no tumour spread, which they never followed up. My Urologist here in Lincolnshire requested my notes and scans from Scotland and also then referred me on to Oncology.

He was also surprised that checks made here when there was uncertainty were never followed up and sent me for scans and had copies of my original notes and scans except the original bone scan which seemed to have been lost in Scotland. The Oncologist here in Lincolnshire then told me I didn't have advanced metastatic prostate cancer and the cancer seemed to be confined to the prostate. He was talking about radiotherapy and maybe an all clear. That was last summer.

That left me quite optimistic and not very happy with the so called experts in Scotland. I was still on triptorelin. To get up to the minute checks my Oncologist sent me for full bloods and a CT scan in preparation for radiology.

Then the surprise and how things change. My bloods show low iron and the CT scan showed a lump in my upper colon. So within 2 weeks I had a colonoscopy which confirmed a large tumour in my colon. I saw it myself and it was an ugly looking lump. That was in late September last year.

I was due another hormone injection in October but when the time came asked not to have it. One of my side effects on triptorelin was dizzy spells when I went up stairs and other similar actions. I had a colon resection coming up shortly and didn't want to be getting dizzy as well. My PSA was about 3 so they agreed. In November I had my colon resection. Nothing is straightforward in life as you probably know. It started out as key hole surgery but the section of colon with the tumour couldn't come out so it then changed to 5 hours of major surgery.

But it was successful. The colon etc was sent to the labs for check and I have been given the all clear from colon cancer. I have not restarted my hormone treatment yet. But I did find that since stopping triptorelin my dizzy spells stopped. A bit of info there that may be useful to someone.

3 months after the surgery I had PSA and testosterone checked. PSA was back up to 12 in February and my latest one is 18. So a call from my Oncologist today as he is a bit concerned about the rise. So it will be blood test now to check kidney function before a CT and bone scan. Then back on hormone treatment.

Depending on the scan results further treatment or staying on hormone treatment may be to come. Since triptorelin gave me dizzy moments he said I could try Zoladex. I don't really want either!! But needs must. If anyone out there has any experience of Zoladex I would be interested.

That's me up to date. Meanwhile through all this I just keep living my life. I have family in the area but live on my own, do everyday things and my passtime is trail running and still running at nearly 75 yes old. I don't think about being ill and will keep on living the life i want as best I can and let the future take care of itself.

Take care of yourselves and keep fighting for you if you think you are not being listened too. Get a second opinion if you feel the need. If I had not moved to England that would have been my next action in Scotland.

Hello to all and a long time since my last post. But still here after nearly 8 years of androgen deprivation therapy. 3 monthly injection of triptorelin. And since last November bicalutimide added. My PSA had started rising so the bicalutimide added and for the moment it seems to be working.

I had the same side effects with bicalutimide but maybe some were increased. The fatigue for one. Also I had some bleeding issues that worsened as bicalutamide has blood thinking properties. The bleeding issues were dealt with and no further problem.

I think you have to know what might or might jot affect you and what you are willing to accept. Get as much independent advice and help as you can. Your doctor or gp may not always accept differences from the norm or tell you about more rare side effects. As well as the info on this sight and the variety of stories to read and learn and compare, I found help line at Prostste Cancer UK helpful and I like the Macmillan help line in particular. They give good advice and not affected by NHS protocols.

So still here and after my original diagnosis of advanced metastatic prostate cancer and nearly 8 years of adt am how in the 5% survivors!! Not that I think about it. Since my last post over 2 years ago nothing has happened on the cancer front but I keep fit. I am a runner and still run about 100 km a month and park runs. Slowing up a bit at 77 but happy with my times. I exercise and walk everywhere.

I have had setbacks. I was trail running and tripped when snagged by a bramble and fell heavily and knew it was bad. I couldn't get up to get back to the car so it was 999 and rescued, straight to hospital where I found I had snapped my femur. So straight in to A&E and a total hip replacement. Blame the cancer treatment as I had osteoporosis. It took me 10 weeks to start running again and as I said I am running as good as ever. I am a "hip runner" now! Yes there is a website hiprunner.com.

That's about it for now. If you have read my earlier posts there has been some question marks over my diagnosis and treatment. And in my mind still there. I have had various scans since diagnosis and joint spread has been found and still no nodes. The problem is my present oncologist can't compare the scans to the original one in Scotland that caused my original diagnosis. So I am having thoughts now about stopping treatment. Not for the first time either. Whether I do or not I don't know. If it happens I will add to my story.

Never accept the status quo.

Rightly or wrongly I have taken the decision to stop any treatment for my prostate cancer. You will see from my previous posts that my case has not been straightforward from the beginning in 2014/1

Diagnosed originally in Scotland with advanced metastatic prostste cancer, after having a psa of 32.2. Told it was terminal, put on triptorelin hormone therapy and that was it. The diagnosis was done by bone scan only and a biopsy would be done later. That never happened and I was too husy as carer for my wife with dementia.

The original bone scan and MRI showed a spread on my sternum and four suspicious areas on hips and pelvis area. Two years after that and with much pressure I had a second bone scan which showed nothing. I was told that meant the treatment was working.

I had the usual adt side effects but bearable and carried on caring for my wife and keeping fit until she passed away in 2018. I then decided to move to Grantham in Lincs where my case was reviewed here and scans etc carried out. Still doubt about where the spread was as still no signs on the new scans. The problem was complicated because Scotland had lost my original scan so my oncologist had nothing to compare his scans against.

My psa eventually started to rise and so I had bicalutimide added to the triptorelin . That lowered my psa but I had a bad reaction to it and my quality of life went by the wayside. My psa was lower so I had a break until it rose again and went back on it for 9 months last year. Again it made me decide to stop it and I recovered some quality of life. Eventually my psa rose to 18 so back on bicalutimide. Which wasn't really working and any other treatment would still have side effects I wasn't really willing to put up with.

All this time since the first diagnosis in Scotland every regular scan over the last 5 years here in England show no spreadcto nodes andc no mets except one spot on my pelvic area which is unclear so down as 1b?

That's where I am now nearly 9 years after being told I was terminal and incurable.

I am 78 in a couple of weeks. And have decided quality of life is more important than longevity. I live on my own and despite everything I am fit and and usually run about 100km a month go to the gym a couple of time a week. I have a social life which gets messed up by the side effects.

My problems with the treatment make life more difficult and at my last meeting (by phone) with my oncologist I said I wanted to stop treatment. Over the 9 years I have never felt I had cancer. The only problem being my treatment, which wasn't working anyway and no change in my scans or blood tests (except psa) since the original suspicious diagnosis 9 years ago.

So that's me, into the unknown! My oncologist said he understood and accepted my decision. I think he was fed up getting scans done every 3 months and nothing ever changing.

I am now on an open appointment scheme. No scans or treatment until I feel any change that may be caused by a change in my prostate cancer. Even if it is months or years down the line I am still on their books.

So I have taken a gamble and who knows how it will go.

I will keep my posts more regular now and a bit shorter I hope, and keep you in the picture. Take care all.

Time flies and apologies for not posting sooner. Anyway rightly or wrongly I stopped all my treatment in May 2023 after nearly 10 years of treatment for advanced metastatic prostste cancer which was terminal and that was it.

Another 15 months on I am back on ADT as it seems I have tumours active in the pelvic region. But not discovered for 4bmonths. I was still a runner covering 100+ km a month. Then at the end of 2023 I found I was losing pace and then unable to go faster when I wanted to. By end of January 24 I had to stop altogether as my legs wouldn't run. Knowing what I know now it was probably the first signs of the tumours growing in my pelvic area.

Then I started getting pains in my thigh and after talking with my oncologist I had one scan and CT scan and they discovered I had large tumour in my right pelvis and a couple in the left. The right side may be trapping nerves in to the lower body hence the weakness.

It is surprising what cancer can affect and not always thinking it is the cause of other unrelated problems.

I have now had a dose of palliative radiotherapy which has stopped the pain but my legs are still weak. But still doing as much as possible to keep going. I live alone and manage without help.

Should I have stopped treatment. Probably not but have no regrets. After being told in 2014 that I was terminal and incurable, afternine years I was fed up with things going nowhere and had nearly a year of no side effects etc. How much longer, who knows, but life goes on and you have to get on with it.

Laurence's e-mail address is: laurencerstaff AT gmail.com (replace "AT" with "@")