Active surveillance

Went to see the radiotherapy consultant last Thursday and came away feeling rather more optimistic. I haven’t yet mad a final decision yet but I’ve swung back in favour of active surveillance. Dr Owen told me that my cancer is 6 on a scale from 1 to 10 where 6 is the lowest grade of cancer tumours and therefore the least aggressive and lowest risk. This grading system appeared to be different form the one the surgeon consultant was using a couple of weeks ago as reported in my last post when I was told I was 6 on a scale of 10. However, the printed report I was given says that my grade is 3+3 which (using information on the web Gleason grade and Gleason score) is the lowest grade where 1 and 2 are variants of normal prostate cells. A Gleason score of 3+3 indicates all of the cancer cells found in the biopsy look likely to grow slowly. Not however the term ‘likely’. Dr Owen assured me the previous consultant and she are only talking about the active surveillance option because the cancer is in all probability low grade, slow developing and local to the prostate. If I go on the active surveillance programme I will have my blood checked for the PSA level every 3 months along with physical examinations but will also have an MRI scan to see if there are any visible signs of tumours pushing against or through the prostate wall. If the scan is OK then blood test will continue at intervals to check to see if the PSA level is stable and, all being well, another targeted biopsy will be taken after a year. If there are signs in the future that the cancer is more aggressive than thought the options of surgery and/or radiation therapy are still open. If this is caught early enough there is still the possibility of cure rather than simply managing the condition. The downside or active surveillance is that a proportion of men on it end up having surgery or other treatment anyway and, as they are older by then, the side effects can be more problematic and recovery take longer. In some cases it is found a more aggressive cancer was present all the time in which case it would have been better to have had surgery or radiation treatment straight away in the first place. Every decision comes with risk. The virtue of active surveillance is that for many men it means they do not undergo unnecessary and invasive treatment that could have serious life changing bad consequences for them.

Part of my rationale for seriously considering active surveillance is that I am a relatively fit and otherwise healthy 69 year old and have the prospect of getting quite a lot fitter over the next 6 months or so. Generally speaking younger men recover from the treatments much faster than older me simply because they are fitter and have better muscle tone in the relevant areas. One example is that men in their 50s are much more likely to have side effects like incontinence and erectile dysfunction clear up significantly faster than older men, say in their 70 or 80s. This is not because the procedures are any different for younger men but because they have a higher level of general fitness. As far as incontinence is concerned this is to do with the condition of pelvic floor muscles which is why we are encouraged to do specific exercises to strengthen them before treatments are carried out. My plan would be to develop the pelvic floor muscles of a young man pre-emptively so that if/when I have surgery or radiation in the future I will be in the best possible condition to deal with it and recover.

As a matter of interest I had two different radiation options detailed – the insertion of radioactive seed into my prostate (Brachytherapy) and full external radiotherapy where a programme of treatments takes place in 5 day blocks weekly of about 7 weeks. More details can be found on the MacMillan web site Radiotherapy for cancer of the prostate.

Prostate cancer

On Thursday 13th August I discovered I have prostate cancer. While I was in hospital as a result of my kidney injury after a mountain bike crash an examination discovered my prostate was enlarged (normal for some one of my age) and asymmetrical. Couple with a blood test that showed I had a high PSA (prostate specific antigen) reading of 7, I was advised to have a prostate biopsy as soon as I had recovered from the accident. I had this on Monday 27th July and met with the consultant today to let me know and discuss the options.

The biopsy took 12 core samples the positions for which were chosen on the basis of measurements of the enlargement.  One of the samples revealed a low grade low risk cluster of cancer cells. These are of a slow growing type and are unlikely to kill me before I die of something else age related or an accident. Like most men with this type of cancer I would eventually die with prostate cancer rather than of it. I could just forget the whole thing, hope for the best, and get on with my life. The problem with this is that the biopsy may well have missed other areas of cancer one or more of which may be of the more aggressive type. In fact this would have been the case if no cancer had been found. Even biopsies are not conclusive when they find either none or low grade cancers.

So we started discussing the treatment options. The first on offer was something called active surveillance. This is appropriate for localised prostate cancer, that is cancer that is contained wholly within the prostate. Its the ‘wait and see’ approach. Blood tests are taken every three months to check the PSA level, physical examinations and possibly scans are taken less frequently and probably another biopsy every year. If things begin to go pear shaped then intervention treatments can swing into action at that point. Some men go years on this scheme and never appear to develop aggressive cancers or develop metastasis, the development of secondary malignant growths at a distance from a primary site of cancer, so-called secondaries. One problem with this is that physical examinations and scans cannot detect the micro ‘leakage’ of cancerous cells from the surface of the prostate. So the decision to adopt this strategy is based on the probability that the cancer is contained. Another problem is that the PSA level is not a reliable indicator of cancer anyway. Even if the level remains constant or goes down doesn’t mean that no aggressive cancers are developing. Apparently the most aggressive types don’t produce PSA. Finally many men on this programme still end up having interventionist treatments within the first 5 years and the delay can in some cases let the cancer develop to such an extent that it can only be managed rather than cured. If the cancer is detected early enough in many cases a cure is possible. Where the cancer has not spread a complete removal of the prostate can be the end of the matter, a complete cure. After a certain point the language of ‘cure’ is dropped.

So far the decision is between ignoring the whole thing ans hoping for the best or keeping an active eye on things in the hope that if the cancer develops it will not be too late for a curative treatment. I would like some notion of the odds on this. What percentage of the ignorers go on to develop more serious cancers, what percentage are still caught in time to be cured and what percentage have to have the condition managed and go on to die of it eventually. How many years do they on average last and what is the quality of their remaining lives? For those on active surveillance, what percentage eventful have to succumb to interventionist treatments and what are the outcomes in terms of longevity and quality of life?

Then the discussion moved to the interventionist treatments. The consultant I was speaking with was a surgeon so he admitted to a bias in favour of surgery. One option is for a radical prostatectomy, an operation to remove the prostate gland and some of the tissue around it. The operation may be done by open surgery or it may be done by laparoscopic surgery through, usually four, small incisions, i.e. key hole surgery. At the Bradford Royal Infirmary this is done robotically. da Vinci robot provides pioneering treatment at Bradford Royal InfirmaryPatient feedback on the robotic procedure.

The key point here is that if the cancer is local it offers the possibility of a complete cure but there is a danger of serious side effects; incontinence and erectile dysfunction (ED). These side effects are normal but in many cases are temporary. The incontinence is normally caused by loss of strength in the pelvic floor muscles so patients are encouraged to do regular exercises before and after surgery. I think a sphincter is removed during the operation so it is necessary to learn how to take more conscious control of your bladder. Initially a catheter is fitted but comes out after 2 or 3 weeks. From then on incontinence pads deal with trickles but this usually improves over a period of up to 10 months and a lot quicker for most. ED is largely down to nerve damage either side of the prostate but modern surgery techniques can often preserve these, or some of them at least. Again for most men this is something that improves over time. The seminal vesicles are removed as well so no sperm or seminal fluid is produced leading to dry ejaculations which can be uncomfortable until you get use to them. Both permanent incontinence and ED can be treated, the first by surgery and the latter by various techniques. It is only after removal that the prostate can be examined to see if the cancer was contained. If so a cure is likely. If not radiation can be used as plan B.

One reason to consider surgery is that radiation can still be used as a fall-back but if radiation is done first surgery  is not usually possible because of damage done to the prostate. Surgery seems to leave open the possibility of more options in the event of continuing or secondary cancers. And radiation can have much the same side effects a surgery in terms of incontinence and ED. I’m seeing a consultant to discuss radiation options on the 27th August so will know more about the pros and cons then.

In the meantime I have a specialist nurse contact I can call any time with questions. I have started my pelvic floor exercises and am continuing to do some research. My first reaction on learning I had cancer and that it appeared to be low grade and low risk was to opt for active surveillance. I may still go for this but I’ve swung round a bit to the idea of surgery for a number of reasons. First the biopsy is inevitably inconclusive. I may have high grade cancer and delay would increase the danger of metastasis if this hasn’t occurred already. Psa and scans can’t be sure of this; only removal and analysis. Also it leaves open the possibility of follow up treatments if surgery is unsuccessful. The side effects are usually temporary and effect only a small percentage of patients. In any case other treatments are available for these.

Despite all this there is an excellent chance (that I would like to quantify) that my cancer is low grade, slow to develop and I could just live the rest of my life as normal. But it’s a risk. The reason I am still thinking about active surveillance, for perhaps a year anyway is that I had to pull out of a number of racketball and cycling events because of my accident. I’d like to play, if possible in the over 70s National Racketball Championships next July. By then I’d be due for another biopsy and could make the decision about surgery then.