Over something like 6 years or more, I developed a number of symptoms that have now disappeared or substantially improved since the prostatectomy. As most of them are not directly related to the prostate, I was diagnosed as having all sorts of ailments from arthritis, depression, to developing diabetes. When I was finally diagnosed as having prostate cancer my previous doctor said "I never considered prostate cancer as he is too young!" Most doctors do not seem to consider prostate problems until the age of 50, but I was around 42 when I started to develop symptoms. I ended up diagnosing the problem using the Internet after having been told by my GP to get counselling for my mood swings, because he could not find anything wrong!!
The symptoms I had included:
Dizziness and "spaced out" sensations
Pain in the hips, spreading to the knees
Adrenalin rushes with pounding heart
Hot and cold flushes
Rapid mood swings
Sugar and alcohol intolerance
Restriction in urine flow
Reduction in semen output
If you are a male and experience these sorts of symptoms, or other inexplicable symptoms, then I suggest that you ask your doctor to check out the prostate. Prostate cancer is not accompanied by discomfort or pain in the prostate itself until the very late stages, so early detection by DRE and/or PSA test are very important.
I was fed up with not making progress through the GPs that I had seen, so I sat down one night and surfed the Internet medical sites, and the prostate gland seemed to be mentioned quite frequently. I was not even sure what this was, so I did more surfing. The more information I found, the more I was convinced that the prostate was involved, but did not really think it would be cancer.
Another visit to the GP confirmed by DRE (Digital Rectal Examination) that the prostate was not normal in size or shape. I was sent off for a blood test (nearly chickened out!), and the result showed a PSA (Prostate Specific Antigen) level of 10.6, compared to a normal reading for my age of under 3.0. At this stage I was told that it could be cancer, but more likely to be Prostatitis.
A letter was written to the hospital for a specialist opinion. After several weeks of waiting, no appointment arrived, so I chased it up, only to find that I would not even get allocated an appointment for several weeks. Back to the GP for a private specialist referral, as we were getting anxious about the uncertainty of it all.
The Urologist does another DRE, measures the urine flow and orders some more blood tests. At this stage it becomes a "probable" cancer and more tests and scans are ordered over the next month. The first is a TRUS (Trans-Rectal UltraSound) Biopsy, where an ultrasound probe and biopsy needle are used to view and take tissue samples from the prostate. This made me sore, but some pain relief and a good night's sleep settled it down, plus there was some blood in the urine the next day.
Next comes an MRI (Magnetic Resonance Imaging) scan, for which I was put into a long tube in a piece of equipment for about 45 minutes in total.The only concern I had here was that I am a bit claustrophobic and hated being confined for so long. The equipment uses very powerful magnetic fields and radio frequencies, which are very noisy. It is like being put into a metal tube that is then hit with sledge-hammers for several minutes at a time, so they provide you with earphones and soothing music. The radio frequency magnetic fields are like being in a microwave, and you can actually feel parts of your body vibrate and warm slightly, which is soothing and did ease the discomfort in the prostate area for several days. I had to drive to Auckland and back for this, and decided not to stay overnight so I covered 1200km that day.
Finally a Scintigram, in which a radioactive substance is injected into the blood stream, with compounds that are known to collect in diseased or inflamed bone tissue. I then had to come back in about 4 hours to allow the excess to be passed out in the urine, leaving just that which had collected in the places of interest. Several time-lapse Xray shots are then taken of the radiation coming from those spots. I remember a friend telling me that when she had a scinitigram, she kept setting off a smoke alarm with the radiation from her body!
The results of these tests and scans were that it appeared that I had a particularly aggressive prostate cancer, but that it did not appear to have spread beyond the prostate itself. I had a Gleason score of 10. The Gleason score is made up by adding the best and worst biopsy sample scores rated from 1 to 5 on severity, so my best and worst were both 5. As the scans did not show anything consistent with spread of the cancer, I queried the validity of the biopsies. Three more biopsy samples were taken and tested with the same result as the first set, and the PSA level in my blood had risen to 13.8 in about 2 months. This was all bad news, as the reading I had done tended to indicate that I may only have a 50% chance of surviving 2 years. I asked the urologist if my condition was life threatening, and had my fears confirmed. A Radical Prostatectomy (complete removal of the prostate gland and associated lymph nodes) seemed like the only chance of stopping the cancer now, and there was no time to lose.
The urologist in the public hospital had apparently had an accident, so the public system was again unable to help. I was in financial trouble and had sold the house to try to pay off the creditors, so was left with the choice of delaying the surgery with a high risk of dying from cancer, or using our remaining funds for private surgery and facing bankruptcy. After discussing the situation with family, friends, solicitor and accountant the latter course of action was taken. Sure enough, a guy that I used to respect as a friend, and had not been prepared to accept small repayments off the money I owed him from our business dealings, made me bankrupt shortly after my surgery.
It was agreed that the surgeon would remove the Lymph Glands first and send these away for an immediate 'frozen section' at the lab. In the meantime, I would be kept under the anaesthetic pending the results. If the nodes appeared clear of cancer, then the prostate would be removed and chances of a cure were good. If the nodes were affected by the cancer, then the prostate would be left, as the cancer had already spread.
I was fortunate, the nodes were clear, so the prostate was removed and sent off for analysis. The surgeon told me he was pleased with the surgery and that he thought that he had taken out all the cancer.
As for the physical side, I had a wound from naval to the pubic area, the prostate gland had been removed, the urethra reattached to the bladder and an indwelling catheter in place to take away the urine until my own plumbing was water tight again. Initially there was more urine coming out of the abdominal drain than the catheter, but as things healed up all of it came out of the right tube.
Prior to the surgery I asked how long I would be in hospital, and was told up to 10 days, but 7 or 8 days is normal. When I asked what was the shortest time, I was told 5 days, so this was my target!
Upon returning to my room I set myself some targets, as I wanted to be out of hospital as soon as possible. Each day I planned to achieve a milestone towards recovery. After one day the Morphine dispenser was not used, next the oxygen, the IV drip, moving the bowels, then the abdominal drain on the fifth day and home at last!.
I have to say that the staff in Mercy Hospital were superb, but it was not home and I hated the hospital bed, which was very uncomfortable with my sore hips. A highlight of my stay is when my wife, Sue, turns up on Valentine's Day with a potted red rose. This rose is very special to me and has grown well since, being very symbolic of our relationship.
The thing that I found most difficult was the indwelling catheter. How they managed to get a tube that size up there in the first place was amazing anyway! A couple of tips I learned the hard way. Firstly, always detach the urine bag from the bed before walking away, as suddenly being restrained by the catheter is not pleasant! Secondly, if you sleep on the tube or pinch it so that you get a full bladder, don't let it drain too quickly as the bladder snaps closed and part of the bladder wall gets sucked on to the end of catheter. This can cause the bladder to start cramping and hurts incredibly.
My bowels caused a hassle in the first two days with constipation, and peristaltic stimulant suppositories only made it worse. Finally I was prescribed some mini-enemas, and these did the trick. This is apparently quite common, but nobody told me ahead of time.
Over the four weeks to removal of the catheter, I learned how to cope with it. I carried on with life, albeit somewhat more slowly and carefully than before. After removal, I was relieved but incontinent. Bladder control came to some degree within a few hours, but the stress incontinence continued for weeks. The stress incontinence is triggered not by major movements like lifting because you brace yourself, but more the little things like standing up, reaching round, laughing or coughing.
The catheter removal was done after an Xray had confirmed that the joint at the base of the bladder was now water tight. This was done by simply filling the bladder with contrast solution via the catheter and ensuring there were no leaks.
A persistent pseudomonas infection complicated things, and took several courses of anti-biotics to knock on the head. It is common with catheters and other foreign bodies in the bladder.
Around the time of the catheter removal, we got the news that the lab pathologists had found tiny threads of cancer in the prostate that had been cut, and therefore the cancer had broken out of the prostate gland. In other words, the surgery did not get all of the cancer. This was the most depressing news, but eased by the probability that the remaining threads of cancer were likely to be killed by a course of radiotherapy.
The other side effect of a radical prostatectomy is impotence. This takes a bit of getting used to, and I certainly hope that it is not permanent!.
3 months after the surgery, I was referred to the oncology radiotherapy department at Palmerston North Hospital. There were an couple of initial consultations where the treatment and the probable effects were explained in detail. The thought of being hit by so much radiation and the side effects were a bit daunting, so they give you plenty of chances to 'chicken out'.
One lasting impression that I have of the RT department is how kind, caring, and supportive they are. So much so that I became quite upset after the first 'planning' session simply because I was in a pleasant waiting room with a couple of very elderly patients who were in a very poor state of health, basically propped up and being kept barely alive. I remember thinking "Hell, am I going to be that bad, no wonder they are being so kind". When I told the nursing staff later on how I had felt, they thought it very funny that I had been upset by them being so nice to me. The other lasting impression is how careful and precise they were with the treatments.
Basically radiotherapy is designed to give mild radiation burns to the treatment area (did I say mild?), from which normal cells will recover and regenerate, but cancer cells will not. The net result being that the cancer cells are killed.
First of all the 'planning' is done, and this consisted of a 'CAT' scan and a series of X-rays on a simulator to get precise positioning of the treatment beam. Lasers mounted on the walls and ceiling make red crosshairs on the body, which are then marked with dye. All modesty goes out the window at this stage!
With crosses on each hip and in the pubic area, the treatment machine can be precisely aligned to ensure accurate treatment. These crosses are touched up with more dye every few days during the treatment period.
Then on to the treatment room. This is a large room, with what looks like an enormous food blender, about eight feet high with a six foot long head that can rotate through 360 degrees. The patient gets on a bed (after doing a 'down-trou', if a prostate patient) which then raises up to about five feet (the centre of the pivot on the machine) and moves under the head. It pays not to look down! The lasers in this room allow the operators to position the patient exactly using the crosses marked in dye. Even the rotation of the feet is controlled to give precise positioning. I sometimes wondered how much it would matter if they were a few millimetres out, as they were aiming at just the bits I would prefer they missed!)
After the first day, the ritual only takes a few minutes, as the head is positioned in four quadrants, to give a few seconds burst from the 18 Mega Volt Linear Accelerator, which just buzzes each time it is used, much like an X-ray machine.
The effects of the radiation take a while. After a couple of weeks, the bowels get irritated and loose, general tiredness sets in as the body fights to repair the damage, and a mild nausea. After 3-4 weeks the bowels are getting quite painful, and various medications are needed to keep the symptoms under control. In the final 2 weeks, things get rough, with bowels and bladder now extremely sore and losing blood, and like several other men that have been through this, I wondered if I would be able to stick it out to the end! But I thought it would be pointless to have come this far and back out, so I just ended up taking more pain relief etc. and seeing the funny side of things wherever I could. It also came home to me that I was lucky, as prostate cancer could be cured in many cases, and other patients were much worse than me.
It was 3-4 weeks after the end of the radiotherapy before the effects started to really wear off, and bodily functions stopped being like torture. People remarked how well I looked, and my energy levels steadily improved. In the fifth week I had a blood test in readiness for the six week clinic. The PSA level came out at 0.1, down from 1.3 prior to radiotherapy and from 13.8 prior to surgery. This is a major relief.
The physical symptoms have still not settled down, particularly on my left side where the pain is quite sharp at times. Another Scintigram (Bone Scan) has been ordered, so we now await those results...
Late November 1997, another 4 months has passed, and I return to the Hospital Oncology Radiotherapy department for a follow-up appointment. The PSA is 0.2 this time, but I am told this is the same as 0.1, as is anything below 0.4, due to the experimental errors in the PSA test. The discomfort in my left side still exists, although settling slowly. I still have a little stress incontinence, but nothing to cause concern - just the occasional drops. The impotence is getting me down at times, making me feel inadequate but there is no treatment available under the public system. In any case, I do not fancy the injections. There is supposed to be an oral treatment available in New Zealand early in 1998, so I plan to try that.
February 1998, I visit the urologist. PSA results were found to be <0.2 and not 0.2! There had been a change in reporting method by the laboratory and the old 0.1% and the new <0.2% both apparently meant that the test was unable to find a measurable amount of PSA. Big sigh of relief! Still some stress incontinence. Still impotent. Tried injections twice, but were very painful after a three hour erection.Viagra supposed to be coming to New Zealand soon, so unsure whether to wait for that or not. Discomfort in my side slowly decreasing. Urologist checks it out, it is apparently thickening and tenderness in the bowel due to the radiotherapy. I now rarely take pain relief, except for an occasional Voltaren on wet days when I am low. Have tried Honey with Deer Velvet in it, and it does seem to reduce the aches & pains, without the side effects of Voltaren.
May 1998, back to the Hospital Oncology Radiotherapy department for a follow-up appointment. The PSA is <0.2% again. The oncologist doesn't think that the bowel is going to settle down much more, so there will be some discomfort from the combination of that and possible arthritis in the left hip. The Honey still seems to be helping. Have also taken various antioxidant preparations, alternating between Selenium,A,C & E vitamins and grape seed capsules. Have kept fat content of food down, plus eat tomatoes, plums and acidophilus yoghurt and drink plenty of water. How much all this helps, I am not sure, but it makes sense to try to reduce the risk of recurrence after a year of good PSA results.
The combination of surgery and radiotherapy has left me impotent, which makes me feel insecure and inadequate. After looking at the options, I use self injection which is painful but does seem to work. When Viagra is available in New Zealand I try it, but was very disappointed with the results, as it just gave me a thumping headache and incredibly sensitive eye-sight. Maybe the Army could use it instead of night-vision glasses, or is the potential for hundreds of soldiers running around in the dark with erections a bit of a worry?
I am worried about the effects of impotence on my marriage, but it turns out that my wife and I become closer and things are actually better for her. In some frank discussions with other wives over the 'Net, it seems that this is often the case with the change in emphasis in lovemaking.
In mid 1998 a troublesome pain and sensitivity around my left testicle develops and appears to be aggravating the general discomfort I have in my left lower pelvic region. I am assured that it is not cancer, and that the loss of one testicle will not have any affect on testoserone levels, and therefore sex drive or other side effects of lowered hormonal levels such as development of osteoporosis.
I agree to have a left orchidectomy (removal of a testicle) and the surgery is relatively minor, with my total stay in hospital being about 6 hours. As usual I try to do too much too soon, and I develop an infection which takes several months to settle down.
Unfortunately, the scarring from this surgery is taking a long while to settle.
In February 1999, the PSA level is now 0.5, and this is the above level considered to be the threshold (0.4) at which my Urologist considers cancer to be possible. Obviously this is bad news. The whole situation is wearing me down, so I swallow my pride and discuss treatment for depression with my GP. I end up with Prozac, which helps me get my old "bounce" back in my personality. The side affects are a bit of nausea and further sexual difficulties, but these are tolerable. It also depresses my appetite and I start to lose weight, which I take advantage of by doing more exercise.
The PSA is tested again in March and comes out at 0.4. I wonder if the orchidectomy surgery and infection has stirred things up a bit, and they may be settling down again.
In April I have a bad tooth removed. It had been root filled some twenty years ago and had grumbled away from time to time. In reading information on the 'Net, it seems that such dead teeth can be a source of infection and bad health, hence I had it extracted. The dentist remarked that it was the worst tooth he had seen in 35 years of practice, when the black roots were exposed. A gum infection followed,but soon healed, and I felt better for the extraction.
In May the PSA is up to 0.8, and again causes concern. Maybe the extraction and subsequent infection has diverted my immune system from the cancer? It seems certain now that I have metastasized, or secondary cancer, and conventional medicine can offer only waiting until a significant tumour develops, before removing the other testicle and other hormonal treatments. However hormonal treatments do seem to have a limited life, as the cancer may be able to survive without testoserone, and the adrenal gland may start producing the hormone anyway within a few years.
My thoughts keep returning to the little frog poem and I decide that I have to fight back as hard as I can.
The first step is to take control of the situation, so off to the GP to get copies of all my doctors' notes and lab tests. My GP was very helpful and went through them with me before copying them. I create a spreadsheet of the lab results and note down any significant details or events. It is my intention to systematically try different "natural" remedies and immune system boosters and plot the effects on the PSA level. My GP also agrees to my having a monthly PSA test to enable me to monitor the effects.
Over the next few months my PSA goes 0.8, 0.8, 0.9, 1.1, as I try different ideas. So it may be that I have slowed the growth down in the early stages, at which time I was taking Enzogenol, then Saw Palmetto. A TV programme shows work being done in lab trials, that has shown a potential for green-lipped mussell extract to intefere with the growth pathways of prostate cancer, so I decide to try it. It seems that up to 3 times the normal dosage for arthritis relief may be necessary, which would be 12 capsules per day or $12 per day at normal retail prices. I simply cannot afford this, but luck comes my way in September, when an email friend tells me about an alternative source of the product.
I am overjoyed when the director of the company is frank and honest, stating that he has no solid evidence that the product can help with cancer, but he is prepared to supply me at no charge if I want to try it. He genuinely seems to want to help and to know if the product can be of use with metastasized prostate cancer . His product is now called Roemex, and is manufactured in New Zealand, rather than offshore.
My plan is to gradually increase the quantity taken over several weeks and continue to monitor the resulting PSA. I am continuing to take vitamins A,C & E and the deer velvet honey ( I like it on toast anyway).
Over the next few months, the PSA continues to rise 1.3, 1.5, 2.0, 2.0, 2.7, I think the two 2.0 values may be significant at first, but then come to the conclusin it is just lab variation with the testing. I give up on the Roemex as it doesn't seem to be making any difference, and I do get a reaction to it with sinus pain and tingling lips. The kindness shown to me by the producer of this product will never be forgotten, however. I try Enzogenol, Selenium and various vitamin combinations, but the PSA continues to rise relentlessly 2.8, 3.2, 3.8, 4.43, 5.15, 6.03. In this time I have also started significant dietary changes, incorporating many Soy and tomato products and eliminating dairy products as much as possible. Meat consumption is reduced, as is bread and products containing Gluten. The only seafood I have is white fish or salmon, much as I love shellfish, shrimps etc they do seem to cause the same reaction as the Roemex did. I have plotted a curve based on the earlier figures, and the last two results are lower than expected, am I having some effect?
In late August 2000 I start taking a herbal concoction similar to Essiac, and intend to continue with this, along with the essentially vegan diet for the next few months. An offer of the loan of a juicer is attractive, so I will start juicing vegetables soon. At a urology clinic a lump is felt in the area of the prostatectomy site and this is tender. As I haven't had a scan of any type for over 3 years, I am scheduled for a CT scan and a bone scan to see if anything shows. I am definitely getting more bone and joint pain, but is this cancer, arthritis of still some food reaction?
Many people have asked what caused the cancer, how it affects me and will it come back. Others have given me ideas and names of various alternative medicines that have helped their friends or relatives. It has amazed me how cancer has touched so many lives and families, and made me feel fortunate that I managed to diagnose and get help for my own cancer.
Having now read and discussed cancer quite widely, I have formed my own ideas and offer them for others to consider while making up their own mind on the matter.
From what I have gathered, cancer cells are mutated or malformed cells that are normally killed and eliminated by the immune system in the normal course of events. In a normal healthy body, this balance is maintained, and cancer does not get a chance to develop beyond a few cells at a time which are then got rid of. When the immune system is suppressed for some reason, the balance is changed and the cancer cells develop faster than the immune system can cope with them. One of the problems with cancer treatment is that often cancerous cells are very similar to the normal cells in the same area. Treatments tend to kill off both cancer and good cells, which is why people get so unwell during cancer treatment. The basic philosophy is that normal cells will regenerate, but cancer cells will not, so by causing damage to the cancerous area the normal tissue will take over again.
The causes of cancer are therefore often things which put the body under stress, taking vital energy and nutrients away from the immune system. In my case, working long hours and stress must have played a considerable role in this.
There are many alternative medicines available and all claim to have cured cancers. It is now my opinion that just about anything will work if you believe in it. Many of the nutritional supplements have a scientific background to justify the way they work against cancer, and I am sure that this is true, but I think that the body has done most of the work itself. When a person takes these alternative medicines, they have something to believe in, as well as the action of the substance itself. I also believe that there will be other changes, such as improved diet, exercise and sleep patterns that also contribute to an improved immune system. In hindsight, many of the symptoms I experienced initially were not the cancer, but the result food reactions and stress levels I was under. The cancer is simply a symptom of an immune system that has been compromised.
Conventional medicine is somewhat brutal in approach, with surgery removing affected parts of the body, radiotherapy causing radiation damage, and chemotherapy causing drastic chemical changes in the body. All of these treatments are painful and quite traumatic with various debilitating side effects. In my case these treatments appear to have been successful, so six months or so of pain and inconvenience may not be much to pay for many more years of life. I do wonder how it could have been if I had taken better care of my health previously, and had not worked myself into the ground trying to keep my business afloat financially.
I have learnt from the experience, and now have different priorities in life. I have also discovered a lot about other people, seeing others in pain and life threatening situations. It has been alarming to see the reactions of those I owed money to, varying from compassion, to moving quickly to get the money in case I die in the near future.
Thank you for visiting my Web site, I welcome any suggestions for improvements, and am happy to correspond with anyone that has prostate cancer or their immediate family members. Messages may be sent to my email address.
Have a happy day,