All’s well for the moment

Saw Mr Singh this morning and he confirmed the PSA result as 0.04. Although this is double the reading of 6 weeks ago he was not concerned, In fact the level can bobble about a bit and until it reaches 0.1 there is no concern and at that point then they will consider further treatment, Typically it would be years before this happens and in 50% of cases it doesn’t happen at all. In the cases where it does this is called biochemical recurrence. Even then it can be 3 to 5 years before any evidence of clinical recurrence, the visibility with scans of any tumours. My Gleason score was 7 which indicates a comparatively slow growing cancer so all should be well.

If the PSA level reaches 0.1 then radiotherapy is considered. Given that it could take 5 years before clinical recurrence this won’t automatically be offered. If for instance a biochemical recurrence is detected in a 78 year old with a life expectancy of 84 then the return of the cancer may not reduce life expectancy anyway and any problems and side effects of further treatment are worth it. Dr Singh assured me the decision to offer further treatment would be made on a case by case basis. I was concerned that life expectancy varies with socio-demographic group and individual characteristics of health and fitness. My next appointment is for 3 months time.

I had a chance to speak to the research nurse for the trial I have been offered and have pretty well made up my mind not to enter it. She’ll ring on Monday for a final answer.

I am in danger of  suffering from what is called PSA anxiety but I found the following on the internet that is encouraging

PSA Anxiety:

The Downside of Ultra- Sensitive Tests

You’ve had the radical prostatectomy, but deep down, you’re terrified that it didn’t work. So here you are, a grown man, living in fear of a simple blood test, scared to death that the PSA- an enzyme made only by prostate cells, but all of your prostate cells are supposed to be gone — will come back. Six months ago, the number was 0.01. This time, it was 0.02.

You have PSA anxiety. You are not alone. This is the bane of the hypersensitive PSA test: Sometimes, there is such a thing as too much information. Daniel W Chan, Ph.D., is professor of pathology, oncology, urology and radiology, and Director of Clinical Chemistry at Hopkins. He is also an internationally recognized authority on biochemical tumor markers such as PSA, and on immunoassay tests such as the PSA test. This is some of what he has to say on the subject of PSA anxiety:

The only thing that really matters, he says, is: “At what PSA levels does the concentration indicate that the patient has had a recurrence of cancer?” For Chan, and the scientists and physicians at Hopkins, the number to take seriously is 0.2 nanograms/milliliter. “That’s something we call biochemical recurrence. But even this doesn’t mean that a man has symptoms yet. People need to understand that it might take months or even years before there is any clinical physical evidence.”

On a technical level, in the laboratory, Chan trusts the sensitivity of assays down to 0. 1, or slightly less than that. “You cannot reliably detect such a small amount as 0.01,” he explains. “From day to day, the results could vary — it could be 0.03, or maybe even 0.05” — and these “analytical” variations may not mean a thing. “It’s important that we don’t assume anything or take action on a very low level of PSA. In routine practice, because of these analytical variations from day to day, if it’s less than 0. 1, we assume it’s the same as nondetectable, or zero.”

http://urology.jhu.edu/newsletter/prostate_cancer52.php

Trial decision

Went to see Dr. Owen at 4.00pm on the 3rd November to discuss the trial I’m invited to join. I qualify as I have positive margins, i.e. cancer cells in the tissue around the prostate where the tumour was pressing against the surface, a low PSA level of 0.02 and am fully continent. All this was as described in my last post Today’s post prostatectomy consultation. My feeling at the moment is not to go in for the trial and stick with the default position of PSA monitoring and only having further treatment if needed. Hopefully this won’t be necessary but if it is my levle of fitness and health over the next few years will mean I will be able to cope with it.

I went for a blood test on Monday of this week and phoned for the result this morning. My PSA level is now 0.04 but I was assured this was not significant. It is expected that it will bobble about a bit and only of a pattern of regular increase and approaching or going past 0.1 will they be concerned. I’m seeing Mr Singh tomorrow (at 8.45!) so I’ll wait to see what he has to say before I make a final decision on the trial. I need to find out how much longer they will give me to decide. I think it is supposed to be withing 12 weeks of the operation but I might be wrong. It’s been 15 already. I was supposed to get a follow up call from Dr. Owens’ research assistant after my meeting with her but it never came. She may have decided from that interview that I was unlikely to accept.

Today’s post prostatectomy consultation

I made some notes on questions to ask Mr Sing in a recent post Decisions. He was able today to give me a little more detail.

The apex of the prostate where my tumour was pressing on the surface in fact has no capsule so dissecting this area is not so clear cut as the prostate goes right up to the pelvic floor muscle and it is not possible to take as wide a margin for testing as it is elsewhere. Dmaging the floor muscle could lead to permanent incontinence. The sample tissue sent off for testing showed some small areas of limited and focused cancer cells but there is no way of telling if these had gone any further into the surrounding tissue. The dissection is done with an electrical current and it is possible that any cancer cells outside of the incised margin may have been killed off anyway.

I was shown pictures of my prostate and there was an awful lot of cancer marked in red! I forgot to ask if it was confirmed as stage T3a but can ask on the phone which I will tomorrow.

My PSA was confirmed as 0.02, described as very encouraging, especially due to the small and focused positive samples. Although PSA is not a reliable indicator or prostate cancer while you still have one, once removed it is very reliable. It’s early days but there is a good chance it will go down to zero over a little more time and they will check again and arrange another meeting in 6 weeks time. If it rises, especially to over 0.2, then radiotherapy will be recommended. Even then, if left alone, it could be many years before it developed into a recurrence of a discernible cancer tumour.

The standard procedure from here on would be to simply monitor my PSA level and only offer further treatment if it reaches the 0.2 threshold. 50% of men in my condition will not need this. Of the remaining 50% a large proportion will still be cured and the rest most would be able to keep it under control fr many years before palliative care became the last option. This seems to warrant quiet confidence.

I still have to make a decision about whether to go into the trial in which I may be assigned to the group that has radiotherapy more-or-less immediately. At the moment my feeling is that I am likely to be in the 50% who won’t need it based upon my own strategy of nutrition and exercise to stop the cancer developing. I’ll need more information from Dr Owen next week.

Mr SIngh seemed mildly surprised that I have had no problems whatever with incontinence and that I played in my first racketball tournament last week, 9 weeks after my operation. I also mentioned I had just got back on my bike this weekend for very short distances. He didn’t say anything to dissuade me other than to remind me I had had major pelvic surgery. I’ll check this again by phone tomorrow. Also I need t check if it is advisable to not ride for a few days before PSA tests as was the case when I still had a prostate. Could it irritate the residual cancer in anyway and produce a higher reading?

Protein – good or bad

The answer is, potentially both depending on other factors.

Will a high-protein diet harm your health? The real story on the risks (and rewards) of eating more protein. Article from Precision Nutrition web site. The evidence suggests that some of the harmful effects correlated with high protein diets are just that, correlations based on unreliable observational studies, and in any case are reversed with individuals over 65.

Prostate cancer and nutrition

I intend to ask at my next appointment with the consultant if there is any nutritional advice available for helping control the development of prostate cancer. I will keep any information I get in this blog. At the moment I am investigating soy products like soy milk and tofu and also flax seed (otherwise known as linseed). I’m alos looking at a range of herbs and spices.Evidence for and against will be linked to.

For starters, here is an article Flaxseed and Prostate Cancer risk  from the Oncology Nutrition website. From the same websiteProstate Cancer and Diet

Does turmeric really help protect us from cancer? from the Trust Me I’m a Doctor BBC series.

On the dairy milk controversy: Is Milk Your Friend or Foe? Looks like yogurt and cheese are still beneficial and modest amounts of milk, i.e. in tea, are OK too.

Decisions

After a couple of postponements I will now be seeing Mr Singh on Wednesday 26th of this month, October, at 11.30 and Dr Owen, the radiotherapist who is conducting the trial I’ve been invited to join, at 4.00 pm on the 3rd November. (The Radiotherapy and Androgen Deprivation in Combination After Local Surgery trial, conducted by the Medical Research Council, and the Radiotherapy—Adjuvant Versus Early Salvage (RAVES) trial)?

Questions for Mr Singh:

What was the result of the tissue tests on the prostate and surrounding margin where the tumour was poking through the capsule? I have been told the stage was confirmed as T3a.

In that area the prostate was stuck to the surrounding tissue. Was this because of the tumour or because of damage done by the targeted biopsies in that area?

The tissue margin tested positive so there are cancer cells present. These are presumably still prostate tissue and cause or contribute to the residual PSA level I have of 0.02. Is that correct? What does a positive margin mean? How deep a margin was taken? Cancer to edge or not quite so far? Artefact of surgery (iatrogenic intraprostatic incision) or already there before the operation? Was the positive margin adjacent to the prostate apex?

Could these cells produce tumours and if so how long might that take? I was told that it could take years for tumours to be detectable by scans or not happen at all. Can any of these cells move into the blood stream or lead to tumours in other organs or bones?

General prognosis I was offered is that 50% on PSA monitoring would not develop further cancer. Of the other 50% half would respond successfully to further treatment, radiotherapy e.g. and half would not. I didn’t make a note of these figures so I may have mis-remembered. Are these figures correct?

What do the statistics show in terms of the likely time period before radiotherapy is recommended? Are the majority 1 or 2 years or is 3 to 5 more typical? The issue here is that the older a patient gets the more likely the recovery will be affected and suffering from side effects.

If I stay on observation and PSA monitoring how often would this happen and what would trigger concern and a recommendation of further treatment? What would the monitoring be looking for in order to trigger radiotherapy and how quickly would this be commenced.

Is there any expert nutritional advice available for my condition?

Questions for Dr Owen:

What of the new more accurate and targeted therapies? I’ll get a name for these.

Do they take a scan to identify where in the pocket where the prostate used to be (the bed?) to identify sites that need targeting? I understand that once the prostate is removed and the radiotherapy is targeted at the prostate bed it is difficult to measure up and reliably direct radiation and that there is a danger of over dosing the bladder and bowel. Is this correct?

I’ve more time to think about this but would be mostly concerned with the actual procedure and possible side effects, what they could be and how probable. The main ones seem to be incontinence, erectile dysfunction and damage to the bowel. I would need to know how long these tend to last or if they can lead to permanent conditions.

Look at

http://www.europeanurology.com/article/S0302-2838(13)00796-3/fulltext/positive-surgical-margins-after-radical-prostatectomy-a-systematic-review-and-contemporary-update

Positive surgical margins following radical prostatectomy

 

Life is a trial

The meeting with Mr Singh didn’t take place this morning as scheduled. I got a phone call about 9.00 am to tell me it has been cancelled and would have to be rearranged. Given that I had been steeling myself for this and preparing myself for bad news so I wouldn’t be too disappointed if that’s what it turned out to be, this was a considerable let down. However, at 5.00 pm I got a phone call from David, one of the specialist urology nurses offering to go over what would have been discussed at the meeting. First the good news. My PSA level is now 0.02. The bad news is that there was (as he put it) a massive amount of cancer in my prostate and there was evidence of cancer cells right up to the margin of the additional tissue they took around the area where it was poking through the prostate surface. The test of the cancer in the prostate showed it was at stage T3 so at least this is not more aggressive than the biopsy had shown. It was the much greater volume and spread that had surprised them.

He then detailed what this meant. The normal ‘gold standard’ treatment for men in my situation would be to look at the PSA level again in 6 weeks to see if it was going up. Regular monitoring would take place until the level reached 0.2 at which point further treatment, almost certainly radiotherapy, would be recommended. About 50% of men in my condition would have a stable PSA at for many years and never reach the stage when radiotherapy would be required. Of the remaining 50% half would have radiotherapy at some stage and then become stable for the rest of their lives and the other half would continue to develop the cancer to a terminal stage. So normally I would be sent away and seen again in 6 weeks time after a blood test.

However, there was currently being conducted a world wide trial with men in my condition as the subjects. There is some evidence, but inconclusive so far, that overall the outcomes are better (i.e. survival rates in the medium and longer term) if men in my position are given radiotherapy from the outset once they have fully recovered from the surgery, in particular being fully continent. If I volunteer for this I would be randomly assigned to one of two treatment groups, one following the gold standard treatment as described above and the other given radiotherapy as soon as fully recovered from surgery. The issue here is that in practice many men would be given radiotherapy and suffer the consequences of side effects unnecessarily. On the other hand, 50% men who go onto surveillance end up having radiotherapy anyway and would have been better of having it much earlier while they were younger and the disease less advanced. Only time will tell which group will have the better outcomes in terms of 5, 10, 15 and 20 year survival rates. I am interested in joining the trial but will need to think about it more. If I am allocated to the PSA monitoring group, this is what would normally have happened anyway. If I eventually have to have radiotherapy I will probably regret I wasn’t allocated to the radiotherapy group and had it straight away. If I’m allocated to the radiotherapy group I will have 4 solid weeks of daily radiation treatment at St. James Hospital the other side of Leeds and suffer the side effects unbeknown to me entirely unnecessarily. I should have another appointment to discuss this with Mr Singh in the next 2 or 3 weeks and then, if I accept participation in the trial, I will have to see the radiologist Dr. Owen to sign the consent forms. Only then will I be allocated to the observation or radiotherapy group. If I end up in the radiotherapy group I will get the treatment in the New Year. If I’m in the monitored group I could end up having radiotherapy anytime for the New Year and in the years beyond, or perhaps never. Lots to think about.

In the meantime I have recently read a report that says that over 50% of prostate cancers are found to be, after removal, significantly more aggressive than had been determined by the biopsies. David told me, when I brought it up with him as this was the case for me, that this had been well known for some time and that the measuring of biopsy samples was well known to be unreliable and usually erred on the optimistic side. I don’t remember this ever being mentioned to me before and it may have made a difference to me opting to go onto active surveillance when the first biopsy results came through. Although this was my decision I was told afterwards that this had in fact been the recommendation of the interdisciplinary group. Now, with hindsight, this looks to ave been the wrong decision and I should have had my prostate removed last September at the earliest opportunity.

6 week post-op update

It is nearly a month since I last posted and nothing much has happened. I’ve made quite good progress largely through walking although I’ve picked up the pace a bit with racketball.  I started coaching again from Thursday 8th September and returned to doing full Monday and Thursday sessions from Monday the 19th. This was 4 weeks after the operation. I warmed up gently in the gym rather than on court with the other players and did some of the less physically demanding practice routines with them. When it came to playing matches I stayed on the court where we had 4 playing in rotation (so plenty of rest time) and didn’t chase anything, limiting myself to hitting balls that were within a step or two to reach. No twisting and turning and rapid changes of direction. I felt pretty good and knew I was taking it easy as I had no leg aches and pains afterwards, normally a sure sign I had been pushing myself. Last Thursday (29th October) I did the club training evening with our coach, Saeed, and pushed a bit harder. I had done the morning U3A session too with a bit of coaching but had taken it very easy. But by the time Thursday was over my legs were pretty sore so I knew I had been pushing myself round the court a bit harder. The Thursday evening sessions are harder as the players who attend regularly are all pretty good and serious players.

Since the beginning of the month my weight has gone up and stabilised around 12 stone 10 or 11 lbs and, as I write this, I have a bit of a chest and throat cold. This has kept me in doors for the last couple of days but today, a cool but bright and sunny day, I did a 5 mile walk along the canal and am beginning to feel better.

I’m going to see Mr Singh, the consultant, on Thursday this week to hear the results of the tissue tests and the blood test I had done at the BRI Thursday last week. This is when I’ll find out if there is any evidence of cancer in the surrounding tissue and whether I will need radiotherapy or any other further treatment.

The walking cure

On Wednesday 31st August, the day after my catheter and staples were removed, I started a walking regime to help me get as fit as quickly possible. It is now a week later and since then I have met the steps target set me by my Vivofit everyday. While I continue to hit the target the Vivofit increases the step target each day. Last Wednesday this was 7728 and by Tuesday 6th September it had increased to 9347. Over the week I walked 82,912 steps, an average of 11,845 per day, about a 5 mile average. Walking was the only form of exercise that was recommended for the first few weeks with no further instructions other than to “listen to my body”, which I did. Towards the end of the week I started to incorporate a few hills. I’ve been very happy with the way it’s gone and feel significantly better now than I did a week ago. More of the same for another couple of weeks I think although I will not be particularly worried if I don’t meet the targets set every day from now on.

I went to the squash club at Heaton on Thursday 1st September, 11 days after the operation, and had about a 10 minute knock by myself to see how it felt. I didn’t push it at all, just hitting to myself down the side walls in the channels and some figure of 8s at the front to minimise my movement and not damage myself. I felt fine with no twinges. I did the same again on Monday 5th with the same result. I will start going regularly to build on this but it will be a while before I play against an opponent, even socially. Thursday I should be able to return to doing a little coaching as before. My weight has stabilised at around 12 stone 9 or 10, about 6 lbs lighter than when I went in for the operation so my strategy to not put on weight seems to be working so far.

With a view to starting cycling again I have been researching saddles with a cut-out to relive pressure on the perineum. Normal saddles put pressure on this area and can be quite painful for quite a while after a radical prostatectomy as this bears directly on the area where the urethra has been joined up. This gets better over time apparently. I probably won’t ride until I’ve seen Mr Singh and I may need to know if I should delay until after radiotherapy if that is needed.

I have spotted on a couple of occasions a very small blood clot being passed in my urine but have decided not to worry about it. I have 4 weeks before my scheduled appointment with Mr Sing and the BRI (when I will get the histology report and learn if I need radiotherapy) and will mention it then if it continues.

Getting back to normal

On Tuesday 30th September August the catheter and staples removed. The catheter removal I had dealt with before but staple removal was new and I was quite apprehensive about it. The staples are more like the staples you hammer into wood to hold wires in place rather than the office type of staple that go through paper and bend round so the procedure was quick and painless apart from the odd brief sting. Normally staples come out between 10 and 14 days but it made sense to remove them at the same time as the catheter appointment in this case if the surgical wounds are sufficiently healed, which they were.

Then it was just a case of sitting in the waiting room and drinking slowly and steadily two 700 ml jugs of water in order to produce three sufficiently prodigious wees. This involved going to the gents’ toilet and weeing into a bottle with you name on it on a rack – there were 5 men going through this procedure. Every now and then Staff Nurse Sarah (who I thought of as Nurse Catheter) would check the bottles, record volumes and empty them. I managed this without too much difficulty and was allowed to leave at about 11.00 am when Julia picked me up to take me home. I was given a few incontinence pads to take home with me and I was advised to use one straight away before I got of the treatment table as there might be a sudden surge as I stood up. Nothing happened but it was better to be safe than sorry. It is not always as straightforward as this I discovered talking to the other men. Sometimes there is no flow and the bladder just fills up. In these cases a catheter had to be installed again. We were advised to only drink about one small gals of water per 15 minutes as in the past men keen to get away had drunk 2 jugs full straight off in their haste to get away only to find they couldn’t wee and put themselves through some serious pain before a catheter could be replaced.

On arriving home I went for a walk around the local park and felt immediately that I could walk better and in more comfort now the catheter had been removed and felt optimistic about gradually building fitness again although this would be restricted to a walking only programme for a few weeks. I wore the pads for the first two days but didn’t have any leakage problems at all so have pretty well dispensed with them although I’m not fully confident. Most men suffer to some degree or other form incontinence after the operation. For many it is only for a few days, perhaps a couple of weeks. For others it is a constant problem that requires further corrective surgery. It looks like I will be one of the few who don’t suffer at all. If this is the case I think it will be down to two factors, my general level of abdominal fitness through cycling, walking and racketball and the fact that I have been pretty assiduous in doing my pelvic floor exercises for a couple of months before the operation.

My key advice to any man who is going to have this operation is to try to lose a bit of weight and get fitter if necessary but in any case do your pelvic floor exercises. I was instructed to do the exercises as soon as the operation had been done and not wait for the catheter to be removed. While incontinence remains a problem you should do the exercises the recommended 3 times a day. Once continence is achieved this can be cut down to twice a day, for life. Given that you can do these any where at any time, standing up, sitting or lying down, and they only take about 2 minutes there is no excuse. I shall continue with 3 times a day.  I may yet have to have radiotherapy, depending on the histology reports on my prostate and the surrounding tissue removed. This can also produce continence problems as side effect so I want to be in as good nick as possible just in case. I will find out if I will be getting radiotherapy when I see the consultant again on the 6th of October.

Yesterday, Wednesday, I went on a fairly hilly walk of about 2.5 miles and am feeling stronger every day. I will be building up the walking over the next 3 weeks before I have a short easy bike ride, probably only 10 minutes or so somewhere flat, to see how that goes. I’ve had to withdraw from two racketball tournaments in both of which I was lying 2nd in my group. However, the 2016 Yorkshire Racketball Championships are to be held on November 26th and 27th and I hope I may be able to play in this, in the over 60 group.