A lot has happened in the last week or so. I was called back to the hospital to undergo a MRI scan and for xrays because the bone scan had revealed "hot spots" which needed further investigation. This happened last Thursday and although noisy was no problem at all.
Later that day I spoke with my "keyworker" who advised that my case was to be reviewed on Monday and that she would call me afterwards to let me know how things stood.
I spent a restless weekend not knowing if my cancer had spread outside the prostate or whether it remained localised. Having been told that "hotspots" on my spine had been revealed and having only been referred because of my back ache I was not feeling too optimistic, but determined to make the best of whatever I had left.
As you can imagine those around me were also feeling the pressure. We tried to keep busy and not dwell on Monday but when it dawned I found myself reluctant to be more than a few yards from the phone.
The morning came and went. No call. By 3.30 I was convinced I had mis-understood what I had been told so called the hospital. My keyworker was not available and her colleague informed me that yes my case had been reviewed but that the meeting had over-run and my keyworker had had to go straight into a clinic. She had my notes with her, and would call me as soon as she returned to her desk. So again I waited but fortunately not for too long.
The phone rang. It was someone trying to sell me advertising. I am not normally rude but they did not get too far. Then it rang again and this time it was Sally, my keyworker.
With my heart pumping I listened to what she told me. That my cancer had NOT spread and was confined to just my prostate. The pains in my back must be caused by arthritis, which won't kill me.
The next step is to decide which treatment I will be given. I may be offered a prostatectomy, surgery to remove the prostate, but am on the cusp of whether this is possible due to my high Gleeson score, PSA level and age. This is a major operation, with significant side effects but has a good chance of complete success. The alternative is radiotherapy, or which there are a number of types possible, directly to the prostate. This also should produce a good result, but also has a number of side effects.
Nothing is guaranteed and these procedures could still only delay the spread, but they are more likely to remove it completely, leaving me with a normal life expectancy but permanent side effects. Neither is an easy option but both are one hell of a lot better than being told the only treatment I could be offered was palliative, which until 4 pm yesterday I felt in my heart was what I would be told.
You cannot imagine the relief I felt. I had no idea until I was told that I had so much stress in me and it came pouring out, quite a lot of it from my eyes! If Sally had been there I would have kissed her, although Connie was actually holding on pretty tight so might have stopped me.
My file is now going to Addenbrookes in Cambridge, where the surgery would take place, for them to decide if I am suitable. They have a review meeting next Monday, when I will also meet with the oncologist to discuss the radiotherapy option.
I have been asked to stop the hormone therapy I had started, as this is not a good idea for one of the treatments. Whatever is decided the process will last for many months, both to prepare me and then to follow up afterwards.
Whether we can complete the business sale, find somewhere else to live and visit our new house in Cebu during this time remains an open question that I am only now beginning to turn my mind onto.
Over-all though it was really good news and relief all round.
A final word about the much maligned NHS. For me this is a national treasure we should all be proud of. They have acted quickly and efficiently and a with good humour. I loath the tick box, target setting attitude found in so much of the public service these days and just wish that these professionals, who are genuinely devoted to their calling, were left alone to do their jobs and not distracted by having to meet arbitarily set objectives. Rant over.
Tuesday, 9 March 2010
Saturday, 27 February 2010
The waiting
Its been a few weeks since my first attempt so I had best update the situation and then see if anyone is reading this! I hope so because what is happening to me needs to be understood by others, so that they can take the preventative action earlier than I did.
I had my biopsy on schedule. It wasn't pleasant but neither was it of any real concern. Then I waited. And waited. It took another 3 weeks before I saw the consultant again to be told that I do have a tumour. It is graded a 7 on the Gleeson scale (4+3) which means it is on the high end of moderately aggressive. My PSA is now 21. I was immediately put onto hormone therapy and scheduled for a bone scan, which will determine whether the cancer has already spread to my bones. Remember, the original referral was because I complained of back ache! I was told that the bone scan would be done within around 2 weeks, but was actually called in 2 days later.
Now I am waiting for the results of this scan and this will determine just how far this has progressed, what the treatment will be and how long I am likely to live. If there is no metastatis to the bone then the homone therapy will probably be replaced by radiotherapy directly on the prostate to kill the cancer cells and I could live for a lot longer. If it has spread.....well I read that only 30% of men survive another 5 years, it cannot be "cured" and the treatment becomes pallitive.
So my life is on hold whilst I wait. We cannot progress with our planned part time move to our lovely new house on the beach in the tropics, and because of the NHS rules on the treatment of Brits living abroad, may never be able to. We were planning to move our UK location to either Devon or Dorset and were due to start house hunting, but have had to suspend that for the time being.
The first indication something was wrong was 3 years ago, when due to a poor urine flow an enlarged prostate was diagnosed and eventually I had a "TURPS", which reduces its size. At no time was cancer suggested or my PSA checked. This was always classified as a benign enlargement, something which was pretty normal for a man of my age. It now seems pretty obvious that the cancer was already there and was missed.
I would encourage anyone who suffers even the slightest symptoms which might suggest a similar problem not to ignore them, and go and get your PSA level checked, via a simple blood test. The symptoms include a poor flow, increased frequency and any type of back, hip or pelvic ache which might seem minor or dull and dismissed as irrelevant, age related or "wear and tear" arthitis. It is too easy to accept these as nothing, or for Doctors to re-assure you not to worry, take pain relieve and rest. My advice is make a fuss, get checked and be certain that early onset prostate cancer is not the cause. Catch it early and it can be treated successfully. Catching it late is not a good idea.
More later, after this period of waiting is over.
I had my biopsy on schedule. It wasn't pleasant but neither was it of any real concern. Then I waited. And waited. It took another 3 weeks before I saw the consultant again to be told that I do have a tumour. It is graded a 7 on the Gleeson scale (4+3) which means it is on the high end of moderately aggressive. My PSA is now 21. I was immediately put onto hormone therapy and scheduled for a bone scan, which will determine whether the cancer has already spread to my bones. Remember, the original referral was because I complained of back ache! I was told that the bone scan would be done within around 2 weeks, but was actually called in 2 days later.
Now I am waiting for the results of this scan and this will determine just how far this has progressed, what the treatment will be and how long I am likely to live. If there is no metastatis to the bone then the homone therapy will probably be replaced by radiotherapy directly on the prostate to kill the cancer cells and I could live for a lot longer. If it has spread.....well I read that only 30% of men survive another 5 years, it cannot be "cured" and the treatment becomes pallitive.
So my life is on hold whilst I wait. We cannot progress with our planned part time move to our lovely new house on the beach in the tropics, and because of the NHS rules on the treatment of Brits living abroad, may never be able to. We were planning to move our UK location to either Devon or Dorset and were due to start house hunting, but have had to suspend that for the time being.
The first indication something was wrong was 3 years ago, when due to a poor urine flow an enlarged prostate was diagnosed and eventually I had a "TURPS", which reduces its size. At no time was cancer suggested or my PSA checked. This was always classified as a benign enlargement, something which was pretty normal for a man of my age. It now seems pretty obvious that the cancer was already there and was missed.
I would encourage anyone who suffers even the slightest symptoms which might suggest a similar problem not to ignore them, and go and get your PSA level checked, via a simple blood test. The symptoms include a poor flow, increased frequency and any type of back, hip or pelvic ache which might seem minor or dull and dismissed as irrelevant, age related or "wear and tear" arthitis. It is too easy to accept these as nothing, or for Doctors to re-assure you not to worry, take pain relieve and rest. My advice is make a fuss, get checked and be certain that early onset prostate cancer is not the cause. Catch it early and it can be treated successfully. Catching it late is not a good idea.
More later, after this period of waiting is over.
Monday, 25 January 2010
The start
This is my first ever blog. So why now and will anyone read it? Well, the reason is simple. I feel the need to share my recent experiences with others, and for reasons which will become obvious, don't want to do so with all my friends. As time goes by, if I get a response, then I might also open up on some other issues too. Lets see.
A few basic facts. I am 65 years old, own a medium sized and succesful business and married to a much younger, very talented and pretty lady. I have recently completed a second home which is right on a tropical beach and where we have planned to spend half our time in future, leaving the business to run under the local manager. Pretty lucky guy? Well I thought I was until a week or so ago.
What happened? I went to see my doctor because I was suffering a persistant cough and one of my knees was playing up a little. I am not a smoker but have been diagnosed with some arthritus, not too bad or surprising at 65. I mentioned in passing that I was also experiencing a little lower back pain, which I regarded as simply a consequence of getting older. However the doctor examined me and sent me for a blood test "just as a pre-caution". He told me that they would be checking my PSA levels and that he would only call me if they showed any abnormaility. I had never heard of PSA so did some research. It seems it is an indicator of prostate problems. I had an enlarged prostate a few years ago, which required me to undergo a TURPS, a small operation which reduces it's size and this was really successful.
I had the blood test and really did not worry until the doctor called to inform that my PSA showed up at 20. The normal at my age is around 4. A PSA of 20 indicates a possible prostate cancer. The problems with prostate cancer become more serious if and when it spreads to the bones. My doctor referred me BECAUSE of something wrong with my spine. So I started to really worry.
I was referred to a consultant who examined me, using a "DRE" (don't ask, but it is both painful and not very dignified) and he told me that he thinks I have a tumour. Now I must have a biopsy to confirm this and if I do to determine what stage I am at. This may then be followed by bone scans before the course of treatment is decided, along with a prognosis to inform me what my future might be. I could be 100% clear (unlikely) or I might only have a short time (also unlikely). The most likely result is something in between but where is totally unknown right now.
Am I worried? Of course I am and so are those close to me, but its going to be a couple of weeks before I know anymore. My biospy is scheduled for Tuesday 2nd Feb and it will no doubt be a week or more later before I get the results.
In the meantime a word to all of you who have little aches and pains and don't do anything about them. Until a couple of weeks ago I was self righteously proclaiming that I was in fantastic shape for my age. I ignored my aching back and my night time loo visits, putting them down to just being 65. My lovely wife and new beach house beckoned. Maybe they still do, but please don't you ignore any warning signs. Go get checked as early as possible. We Brits don't like to be a "bother", but its' folly.
I will update this as things progress and chat through whatever happens.
A few basic facts. I am 65 years old, own a medium sized and succesful business and married to a much younger, very talented and pretty lady. I have recently completed a second home which is right on a tropical beach and where we have planned to spend half our time in future, leaving the business to run under the local manager. Pretty lucky guy? Well I thought I was until a week or so ago.
What happened? I went to see my doctor because I was suffering a persistant cough and one of my knees was playing up a little. I am not a smoker but have been diagnosed with some arthritus, not too bad or surprising at 65. I mentioned in passing that I was also experiencing a little lower back pain, which I regarded as simply a consequence of getting older. However the doctor examined me and sent me for a blood test "just as a pre-caution". He told me that they would be checking my PSA levels and that he would only call me if they showed any abnormaility. I had never heard of PSA so did some research. It seems it is an indicator of prostate problems. I had an enlarged prostate a few years ago, which required me to undergo a TURPS, a small operation which reduces it's size and this was really successful.
I had the blood test and really did not worry until the doctor called to inform that my PSA showed up at 20. The normal at my age is around 4. A PSA of 20 indicates a possible prostate cancer. The problems with prostate cancer become more serious if and when it spreads to the bones. My doctor referred me BECAUSE of something wrong with my spine. So I started to really worry.
I was referred to a consultant who examined me, using a "DRE" (don't ask, but it is both painful and not very dignified) and he told me that he thinks I have a tumour. Now I must have a biopsy to confirm this and if I do to determine what stage I am at. This may then be followed by bone scans before the course of treatment is decided, along with a prognosis to inform me what my future might be. I could be 100% clear (unlikely) or I might only have a short time (also unlikely). The most likely result is something in between but where is totally unknown right now.
Am I worried? Of course I am and so are those close to me, but its going to be a couple of weeks before I know anymore. My biospy is scheduled for Tuesday 2nd Feb and it will no doubt be a week or more later before I get the results.
In the meantime a word to all of you who have little aches and pains and don't do anything about them. Until a couple of weeks ago I was self righteously proclaiming that I was in fantastic shape for my age. I ignored my aching back and my night time loo visits, putting them down to just being 65. My lovely wife and new beach house beckoned. Maybe they still do, but please don't you ignore any warning signs. Go get checked as early as possible. We Brits don't like to be a "bother", but its' folly.
I will update this as things progress and chat through whatever happens.
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