Frequently Asked Questions about Prostate Cancer |
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Prostate Research Campaign UK thanks Clive Turner, a patient himself and an experienced counsellor of men with prostate cancer for writing this section. These questions are commonly raised by men during their discussions with Mr Turner. Is there much on the Internet about prostate cancer? Yes, heaps, and a lot of it unvalidated, and very �fringe� in nature, but you can certainly learn a good deal if you are selective in your reading. But the Prostate Research Campaign UK and the other charities have leaflets and other publications available and internet sites such as this one. (add link to publications and sites) How reliable is the PSA test? It is not a perfect test, but it is the best we have at present, and is considered highly reliable by most urologists, especially if it is expertly evaluated, and taken together with a DRE. Yes there are false PSA readings, and they can alarm needlessly, but PSA tests undoubtedly save lives, and there is pressure on the Department of Health to sanction PSA tests in all men aged 50�70 years and to raise awareness of their value. The test can assist in telling the difference between cancerous and benign conditions of the prostate (the latter being inconvenient, but not life-threatening). If cancer is diagnosed, should I have radiotherapy, surgery, or should I �watch and wait�? That depends on many factors, including your location, age, the results of biopsies, PSA levels, and your general health. And expert opinions do differ, but get them anyway, and weigh them up very carefully before making any decision. Going for radiation therapy (and there are various kinds) can be very successful for some patients, meaning they have the tumour cells killed off while keeping their prostate intact (though there are unpleasant side-effects while the therapy is being undertaken). But for those whose tumours reappear, later, even after some years, the possibility then of successful surgery is frankly quite unlikely, especially after unsuccessful brachytherapy. Bear in mind that repeated radiation, though tried, is not usually effective in the long term, and it must be pointed out that ultimate success with radiation therapy is currently not much over 50%, even with improved techniques. By contrast, with a radical prostatectomy, although radical by definition, the success rate in removing tumour and preventing recurrence is commonly over 80%. If you feel lucky, or confident about your chances, then radiation therapy may well be for you, but think about it very carefully. If you decide to watch and wait, make sure you have regular check-ups to see if the situation is changing, and if so, to what extent. If cancer is present, it can stay dormant, or accelerate very rapidly, for reasons that are not yet fully understood. Consultants ordinarily recommend a biopsy, or even more than one, to see what degree of cancer may be present if the PSA level is raised above the norm. I am told this can be very painful and unpleasant. Is this true, and why is it necessary? Biopsies are not exactly thrilling or agreeable to experience, and they can be painful and very uncomfortable. They can also cause rectal bleeding and blood in the ejaculate, but this has been likened to having a nosebleed, and it will stop. Nowadays, doctors taking biopsies from the prostate, via the back passage, will often use a mild sedative, or a local anaesthetic, especially if you ask for one. The results of the biopsy will indicate whether tumours are present, although the tests are not infallible, and they can give negative readings if they happen to just miss a tumour altogether. And surgeons commonly find much more cancer present when they lift the prostate than the biopsies have indicated, given that some level of tumour has been originally revealed. And again, consultants usually want you to have a bone scan before they will deliberate on the best course of treatment. Why is this? Because this will reveal whether any cancer has spread to other parts of the body, having �escaped� from the prostate gland. If this has happened, urologists will think very carefully about surgery, and may well recommend radiation or hormone therapy in such a circumstance.
So, if I go for surgery, is the operation painful? Not really, because any pain is expertly controlled through, for example, the use of epidural anaesthetics and drugs. Is there much loss of blood? No, not normally. About one in four patients undergoing radical prostatectomy nowadays require a blood transfusion, possibly up to two units, (about two pints) � not a particularly significant quantity. Do I need to have some of my own blood taken beforehand? No, unless it will buy you peace of mind, but if there are no exceptional circumstances there is no need. Use of your own (autologous) blood is more common in the USA where there is a higher risk of infection from blood transfusion. While on the subject of blood, I have heard that you see traces of blood in the urine after the operation. Is this true and why is it? It is true, but normally it is only a trace, and just while the catheter is draining urine immediately after the operation, or perhaps for a while longer while the re-routed �plumbing� inside is healing. It normally clears after a week or two at most. Is there any risk that I will die during the operation? There is always such a risk, but I have yet to hear of one example. What about unsightly scars as a result of the operation? This need be the least of your concerns. To gain access to the prostate, many surgeons do an 8�10 cm lateral incision above the pubis, with a small drain hole beside it. Clips instead of stitches are more commonly used these days, and the healing process is quick. Indeed after a few months the scar is not quite, but almost, invisible. How long will I be in hospital? Normally around 5 days, including a 24-hour period in an intensive care ward where they will be monitoring you for any dangerous bleeding, signs of respiratory infection, or any heart rate instability. About a fortnight after the operation, your catheter will be removed and you will be monitored closely for 24 hours to make sure the new �plumbing� is as it should be (for example, your fluid intake will be checked against your urine output). When will I know if the surgeon has successfully excised the cancer? He will tell you what he thinks within 24 hours, but he has to wait for a few days for the laboratory report on the removed prostate to be sure what has been achieved. If the report is such that some cells are thought to have escaped the prostate into the surrounding tissue, then the surgeon may recommend some �mop up� radiation, which is usually very successful. The radiation therapy doesn�t have that much to do compared with clearing the whole prostate of cancer, (in contrast to what is necessary if surgery isn�t performed). Will the PSA have dropped out of sight after the operation? Yes, it should have dropped to about 0.6 or thereabouts immediately after the operation, and then gradually reduce further to an ideal of below 0.1 where, in successful cases, it will remain for the rest of your life. But remember to have it checked every quarter for at least a year, and at the same laboratory, too, otherwise you may get a variation in results that could alarm you. In other words, one laboratory may have machines that only read as low as 0.5, whereas another might read down to 0.1, or even 0.01. In essence the result, as far as you are concerned, is the same. How many years do I have to have these tests? The recommended time frame is 5 years for any cancer to be declared truly gone, but after 3 years with no PSA rise, you can assume your chances of complete recovery are excellent. Are there any special things I need to remember when I am in hospital? Yes, don�t encourage too many visitors; don�t worry about breaking wind (nurses love wind because it shows things are beginning to sort themselves out in the bowel, which will have been a bit disturbed during the operation); don�t eat too heavy a diet because you don�t want to get constipated through lack of exercise and too many heavy meals; drink as much as you can � at least eight pints of water or soft drinks, like cranberry juice, every day for a couple of weeks if you can stand that (it helps to flush the system through after your internal plumbing has been re-routed); and, most importantly, just look forward to the new future that the surgeon will have given you. I have heard that after the operation I shall see my scrotum and possibly my penis very badly swollen and looking severely bruised. What have they done to them and why is this? This is seldom mentioned before the operation because it is of no long-term significance, but yes, there often is some rather alarming-looking swelling � more often associated with the scrotum, which can swell to the size of a small orange � but it subsides quite quickly, doesn�t hurt, and is neither damaging nor even particularly inconvenient or uncomfortable. The penis can appear a bit bruised also, and this has to do with inevitable disturbance (during the operation) of the nerve endings serving the scrotum. But it really is a very short-term problem and is soon history. Is it true that my penis will be shorter after the operation? Well, yes, some men have noticed a detectable change in length (not circumference) when the penis is at rest once everything has settled down. But it�s somewhat relative. It rather depends upon how well endowed (as the expression goes), you were to begin with. If there is a noticeable difference, it is very slight. It is because the newly organized and re-routed urethra has been necessarily shortened and therefore had the effect of �pulling back� the penis into the body just a little. After a few weeks, the urethra will stretch to accommodate most of the change. On erection, the difference is usually of no consequence. Do I need any special nursing care when I first go home? Not normally, though you will need some help getting up from deep armchairs, or getting into and out of bed during the first few days at home. And it is advisable to wear loose clothes, like tracksuit bottoms because your tummy will be a bit swollen, and getting zips done up can be a problem for a while. Also you need a spare urine collection leg bag, which the hospital can give you, or you can buy them easily from chemists. You need to keep yourself scrupulously clean to avoid any infection while the catheter is still in place. Is it painful to have the catheter removed? Not normally, because catheters are much thinner these days. Usually it only takes a moment and it�s gone, but they can occasionally get a little stuck because of a tight fit � which in fact is a good thing in some respects. If this does happen, a doctor will help with the removal, and frankly that can be somewhat eye-watering in effect unless they give you a sedative at the time. But a modern catheter getting stuck is unusual, and you would have to be unlucky to experience it.
Will I feel tired and washed out after the operation? Yes, you will, and this is normal. Some men feel a tremendous loss of energy, and have days when they think they will never regain their original verve, but gradually the energy level returns and the postoperative lassitude soon becomes forgotten. How long should I be off work? Between 6 and 8 weeks is recommended, although reading, telephone calls, and stress-free activity are all fine. Every single patient with whom I have spoken who has returned to work a bit early has really regretted it, and his recovery has taken longer. Remember, nobody is indispensable, and it will probably do your colleagues the world of good to shoulder some of your responsibilities while you are away! Even if you are retired, take it easy, and handle one day at a time. You can�t really drive comfortably for a month, anyway. Can I exercise after the operation? Yes, but listen to the body; it will tell you how much is sensible and when to rest. Will I lose my continence control? Not unless you are very unlucky. Most patients recover control as soon as the catheter is taken away, but it is true that for some it can take up to a few hours, a few days, a few weeks, and even a few months and you might need to wear some padding for a while if leakage is a bit of a problem. As explained earlier, most surgeons ask you to stay in hospital overnight after the removal of the catheter, measuring fluid intake and outflow to see that the plumbing is working as it should and that there are no internal leaks. To some extent, regaining continence control depends upon individual muscle tone (and you will be taught exercises to strengthen the pelvic muscles), the skill of the surgeon who will have done all he can to spare the nerves that affect continence, and a certain amount of incalculable individual luck. The good news is that things almost always dry up sooner rather than later, and you should have a urine stream like when you were a teenager. Is the sexual dysfunction a problem? Yes, for nearly everyone, whatever they claim. However, some ability and sensation, albeit with a dry orgasm (because the seminal vesicles have been removed as part of the operation) can return after a few months, or sooner for a few lucky ones. Normal penetrative sex is a problem because however careful the surgeon was to avoid damaging the nerves during the operation, achieving a sustainable firm erection is no longer possible for most patients, although some men say they can manage reasonably satisfactorily. Having a successful radical prostatectomy is unquestionably a trade-off because if the alternative is to die of prostate cancer, then it has to be remembered that so far as we know there is not a great deal of sex in the grave! Are there things I can do to help me in this context? There are penile injections of prostaglandin which are not painful, and provide an almost immediate erection which lasts well, but some men instinctively find it difficult to give themselves such injections. There are also vacuum pumps that can help. After an erection has been achieved, it is held in place by a steel or rubber ring slipped over the base of the penis. Although effective, some find such a device scarcely conducive to spontaneity. Penile suppositories of prostaglandin are available, but are quite expensive. They do work, though. Accidental overdose can be unbelievably painful and can damage the penis irrevocably. And now, of course, there is Viagra. Some surgeons are suggesting it be tried after about 3�4 months after the operation. But it doesn�t seem to work so well until some 10 months or so have passed. And then for those with no contra-indicated medical history, Viagra can be very effective. If the drug is used with common sense, many patients have reported results little short of amazing, with very few side-effects of consequence. Perhaps a little face-flushing for a few moments, but after about an hour, sex is possible with a good erection, providing there is physical stimulus. It doesn�t work as the other methods do. It needs stimulus, and then it can often provide repeated satisfaction over a period of some 12 hours. The tablets should not be taken more than once in a 24-hour period, and you should never mix Viagra with nitrates (used to treat angina). Popular with the gay community is an amyl nitrate solution known as �poppers�, but this should never be used along with Viagra. Such a practice could prove highly dangerous. Viagra basically works by relaxing the blood vessels in the penis so allowing the blood to flow there more freely. It is a drug that can now be prescribed on the NHS, but the need for it must be genuine and any GP will have to be thoroughly convinced of that need. Don�t buy Viagra through the Internet. As a last resort there are silicone implants (for those who wish to afford them privately), and these work rather like a bendy toy, in the sense that you bend it up when you want that, and down when you don�t. It has to be said, however, that some men have complained that when swimming or playing sports, they can occasionally appear to have a half erection in place, which can be understandably embarrassing. Inflatable penile prostheses produce a more life-like result, but are more expensive. What about my partner? How will a partner be affected? Nobody can �catch� prostate cancer from you, but your partner will certainly be affected if impotence is the result. Frank discussion is vital before and after the operation, particularly if you go for a radical prostatectomy, and that partner must understand the implications along with you. Should I tell my family and friends I have, or have had, a cancer? It�s up to you of course, but why should there be a need for secrecy and shame, and why not become a disciple for regular check-ups and possibly save someone�s life in the process? This is particularly true if you have sons or brothers who have yet to reach their 40s and 50s when a check-up would be wise indeed, unless by then medical science has beaten this disease completely. Will the cancer come back? Well, yes, this has been known, with any of the treatments, but is less likely after skilled surgery, followed by mop-up radiation in some cases, and current success rates are reassuringly high. Was there anything I could have done to prevent the cancer in the first place? Not really, because nobody knows for certain why anyone is affected by it. There are plenty of theories. Some say it is all to do with diet (ranging from eating too much red meat, to not drinking tea or coffee, and eating a lot of ice cream); others believe it is a genetic disease (and there is much research going on in that direction); yet others say it is connected with a multifarious and largely unidentifiable mix of factors, including having had a vasectomy. Nobody has a monopoly of wisdom on the subject. The latest research has found that men who carry a damaged version of a mutant gene are four to five times more likely to suffer from prostate cancer than those who do not have this faulty gene. It�s a case of �watch this space�. And what about the future in terms of treatments? There is much research going on that may one day find a solution for prostate cancer, either through a vaccine, gene therapy or a more certain cure without losing the gland, but we are presently years away from this happy circumstance. And, inevitably, more research money is needed. So send whatever you can afford to the Prostate Research Campaign UK! |