Kidney Cancer - Iolande Jackson's Story
Never Give up -Iolande Jackson's story about her Husband's Kidney Cancer
My mother-in-law
When I met her, my mother-in-law was a pretty 55 year old with a young woman's figure and a lovely personality. She fretted about her cheeks because, in the last few years, the skin had become uneven. The doctor had told her that this was a result of 'nerves' and nothing could be done about it. I told her she looked fine as she was, and I loved her dearly. Over the eight years that I knew her she continually went downhill. She complained about feeling unsteady and of having a headache every day, but to no avail. The doctor told her that this was all related to her nerves, and he prescribed Stematil.
Over the summer of 1985, my mother in law became very sick and by October she was in hospital. Eventually, and only after becoming assertive with the medical profession, we were told she had a brain tumour in the base of her brain, that nothing could be done and that she had up to three years to live. In fact, she lived barely six months.
My brother-in-law
In the summer of 2004, my brother-in-law, an apparently healthy man of 54, was enjoying a day out with his wife when he blacked out. His doctor told him that this was due to a virus and told him not to worry about it. When it happened again, his doctor insisted that it was a virus and gave him a sick note. I suggested that he ask for a brain scan, which he did to no avail. The doctor insisted that it was a virus. Finally, in November 2004 when he had not improved, he was finally given the brain scan. This revealed a brain tumour and he was told that, although he would have an operation to remove the tumour, it would return and nothing could be done to save him. He was told he had 9-18 months to live. After his operation he was given radiotherapy, and for a while there was no sign of brain tumours.
In October 2005, my brother-in-law was given a body scan that revealed cancers in his kidneys. Despite being terminally ill, he underwent an operation to remove one of them.
At no time did anyone from the medical profession contact my husband. At no time did anyone from the medical profession contact my husband. I was concerned that my husband's mother and brother had both died of cancer and I voiced this concern to one of the doctors in our doctors' practice. He told me that a lot of people get cancer and that I was being unnecessarily concerned.
Fortunately, my grown up children were less flippant. They kept nagging us to have a full check up and scans of the brain and body. Apart from being expensive, this meant taking time off work and we both seemed to be healthy, so we kept putting them off. Finally, I am ashamed to say, it was a 'buy one get one half price' mail shot that finally triggered a response! I never could resist a bargain! In Malcolm's case, the offer has saved his life – the scan was literally just in the nick of time.
Three days after the scans, Malcolm received a call from the specialist who had looked at the scans. Malcolm was told that he had one much enlarged kidney and that he had cysts on the other kidney that could be harmless, pre-cancerous or cancerous. I feared the worse, but Malcolm did not seem unduly concerned. Weeks went past before we were finally told that the tumours were, indeed cancerous.
We kept the situation very much to ourselves for a very long time. With our oldest daughter, Annie, thousands of miles away at the University of Queensland, and our youngest daughter, Isabella, doing her finals at the University of Essex, we felt that we needed to have a solution before they heard about it. We had to tell all of the four children on the same day, and before we told others.
The scan also revealed that Malcolm had only had one functional kidney. The enlarged one had become blocked, probably before he was born, and it could not ever work.
The Orthodox Approach – removing both kidneys
We were initially referred to a surgeon rather than an oncologist because kidney cancer is usually removed by surgery in the UK. Radiotherapy and chemotherapy are only used if the cancer has spread (metastasised). According to the main-stream cancer specialists, it is very difficult to treat kidney cancer that has spread, so the prognosis is then not good. Fortunately, all the experts who saw Malcolm were of the opinion that although it was big enough to have spread, it has not done so.
The surgeon was adamant that the one functioning kidney could not be saved The surgeon we saw initially said that Malcolm had to have both kidneys out, and that, although he thought it unlikely that the cancer had spread, it could spread at any time so he thought this ought to be done quite quickly to prevent it from doing so. The problem was that, in the still functioning Kidney, most of the 5 or so 'cysts' were each too large to remove individually. The surgeon was adamant that the one functioning kidney could not be saved because there would be too little kidney left after taking out the tumours to have any cohesive structure. Malcolm would be disabled in that he would be completely dependent on dialysis for 2-3 years.
I started to look into cancer, reading books and everything I could find on the internet. I became alarmed about how unhealthy and restrictive the diet for people on dialysis is. After 2-3 years, when the experts were certain that the cancer had not spread, they intended to give him a kidney transplant, which would mean immunosuppressant drugs to stop the immune system rejecting the new, but alien, kidney. I was even more alarmed at this prospect: I gather that one in two males and one in 3 females on earth today are predicted to contract cancer at some stage and he has already contracted cancer once, so the idea of suppressing his immune system worried me terribly. Our bodies produce cancer cells all the time and it is our immune systems that destroy them, so a healthy immune system is vital to prevent cancers becoming established. We postponed the surgery to give us time to think. Later, we cancelled the appointment for surgery altogether.
Searching for alternatives – can we save the kidneys?
I became obsessed with the idea of saving his one functioning kidney and I virtually stopped work and did full time research, which was made easier because I have a biology degree from the University of York. Also, I run my own business and my staff were very supportive when I took a lot of time out.
It did not take me long to come to the conclusion that mainstream medicine appeared to have little to offer cancer sufferers It did not take me long to come to the conclusion that, other than removing the short-term threat of the cancer spreading by using surgery, mainstream medicine appeared to have little to offer cancer sufferers: Chemotherapy kills off the immune system, which is our greatest ally in fighting disease, and it has a '5- year survival rate' in kidney cancer of less than 3 per cent! Radiotherapy seems little better. On the other hand, traditional medicine (such as herbal remedies) has much to offer at little or no risk to the patient, unless metastasis threatens, in which case, in my view surgery in conjunction with traditional medicine was likely to be the most effective course.
During my extensive research, I found the unique and very helpful website www.canceractive.com that contained a lot of extremely useful information, not merely on orthodox treatments but on complementary, alternative and even new approaches employed in other countries. I was relieved that it was run by a UK based charity because so many websites are based in the US and it is difficult enough to find out who are the key personnel, let alone hold them responsible for their claims.
I ordered a lot of supplements, and a very informative book called 'Everything you need to know to help you beat cancer' by a Chris Woollams, who had set up the charity. I would recommend this book as essential reading to anyone who has cancer and to their close relatives. It saved me an enormous amount of time because so much I needed to know was there, in one easy read.
When I spoke to the staff at CANCERactive they were very caring and helpful, so much so that the next day I got a lengthy call from Chris Woollams, who was concerned that I proposed to pay the charity £270 for a personal prescription from their panel of doctors. Chris was in the UK for 24 hours (he lives in Thailand). He said he thought that the prescription was inappropriate at that time and advised me to have Malcolm tested for food intolerances and allergies plus possible toxins be they chemical or parasitic in origin – he told me of American research about the involvement of chemicals and heavy metals in kidney cancer. I have subsequently had a long telephone conversation with Chris in Thailand and we have exchanged several emails. Neither Malcolm nor I are his clients. He does not earn any money from anything we do, even when we buy his books or order the well-researched supplements from his website. He simply wants to help people with cancer. How wonderful.
Indeed, I am writing this article for the CANCERactive website and magazine (icon) because if Chris and the staff at CANCERactive can do what they do virtually every day for people with cancer for nothing, than this is the least I can do. Chris felt my story would help others with the disease. I'm told some people, including Geoffrey Boycott, the former England test cricketer, refer to Chris as 'The Cancer Guru' and I can see why!
During my research, I had found a most interesting supplement, a mineral complex called zeolite, which is purported to remove heavy metal toxins from the system and then to enter cancer cells and kill them. I ordered zeolite from the suppliers for Malcolm, but, although I felt positive about it, I did suffer doubts because there are a few adverse reports on zeolite on the web among the many positive ones.
Chris didn't know too much about zeolite but suggested we consulted a herbal medical expert called David Broom, who tested Malcolm for substances to which he was intolerant using a VEGA machine. He tested the effect of the zeolite. He said it was not causing any adverse reaction in Malcolm and it was highly reactive in his body, suggesting that it was very effective. Later on, I also checked with the very able cancer specialist, Dr Etienne Callebout, MD, who said that there are no contraindications with zeolite, which I found reassuring.
Building an integrated programme
I put Malcolm on a large number of natural supplements designed to detoxify him, to alkalinise his system to make it hostile to cancer, to boost his immune system, to hopefully kill some of the cancer cells and to prevent spread. All of these supplements were natural, plant or mineral based substances that would not upset him or 'clash' with each other. I also put him on a vegan diet that had a high proportion of raw food and a little deep sea fish. We cut out all sugar and alcohol because these feed cancers and, therefore, speed up tumour growth. We also drastically reduced his calorie intake (starve the man and you starve the cancer).
Malcolm was an ideal patient. I discovered that he has an iron will, and he did not weaken once in his resolve to stick to the regime. The nearest he got to this was one day when he saw that the children had ordered pizza. He went over to it, opened the box, looked at it lovingly for several minutes, then closed the box and ate his raw organic oats soaked in soya milk. He was rewarded with a weight loss of over a stone, which was such a good thing when he later had surgery.
Malcolm was uncomplaining at all times and stoic most of the time. When he did get depressed because yet another door closed on us, I refused to give in to my despair and told him that we must never give up, that there was an answer out there; we just did not yet know what it was. I would then get straight back on the internet, even if it was 1 a.m., and I would cheer him up by finding another interesting possibility.
Staying Calm
I remember when we had a big disappointment because a treatment practiced in the USA that had been successful with tumours bigger than Malcolm's turned out to carry an unacceptable level of risk for a man as relatively young as him. We began to wonder whether we were on a hiding to nothing. Malcolm was near to despair. Then I reminded myself of the alternative: Complete loss of all kidney function. I opened an email from Chris Woollams which read 'Calm Down, you are starting to panic. What will save your husband's kidneys is sound thinking.' I pointed out to Malcolm that Chris did not think we were arrogant or mad to think that, despite the opinion of mainstream physicians, we could find a way for him to keep his kidney. I said "Chris is not saying 'you may be able to save his kidney', he is saying 'the way to save it is to remain calm and think clearly.'" It gave us much needed encouragement.
Chris suggested a number of angles; we found others through our research. We got on the phone to experts in Germany, Switzerland and various places in the USA. We investigated all types of treatments such as using a needle to insert something into the cancer to freeze it, ultrasound, localised chemotherapy and others, all of which looked promising at first, only to have our hopes dashed when we kept coming back to the same thing: We could not be sure with any of these treatments that all of the cancer would be killed off - and because of its relatively advanced development, it could then spread.
We kept returning to the unavoidable conundrum: Full kidney removal by surgery was the only way to ensure that all of the cancer was removed, but this main-stream approach meant total loss of kidney function.
However, I kept imagining someone cutting out the tumours and putting a splint on the functioning tissue to support it, because I believe that visualising a desired outcome is very important. I kept thinking 'there has to be a way'.
If at first.....
(only) when the first surgeon realised that we would leave no stone unturned worldwide, looking for an alternative solution that he referred us to David Cranston in Oxford, who reconstructs kidneys The first surgeon was adamant that the kidneys both had to come out, but when he realised that we would leave no stone unturned worldwide, looking for an alternative solution that would leave Malcolm with some kidney function, he said we should take a second opinion, and he referred us to David Cranston in Oxford, who reconstructs kidneys. At first, we thought it better to go to someone independent, and we were given someone to contact by our good friend Professor Brian Prichard. We ended up being given a second opinion that was in agreement with the first surgeon – very depressing. Then it turned out that the second surgeon used to be the first surgeon's boss! I felt like they were 'all in it together.'
We were running out of options. Although fearing that the original surgeon had referred us to David Cranston just so that he could convince us that there was no hope for the kidney, we thought it worth giving David a try to see if he thought the kidney could be reconstructed. And so we contacted him after all.
We sent through the scans and within two hours David told us he thought he could help us. He invited us to a meeting the following morning. He said he could remove both kidneys, cut out the cancer from the functioning one, reconstruct it and sew it back in! He said that there was a high chance that the kidney would then function again (albeit there was a possibility of complications from internal bleeding after the operation). I could have kissed him!
When asked why he did not recommend this in the first place, the first surgeon said 'because we do not have experience in transplants here!' In other words, his recommendation that Malcolm became the first surgeon's recommendation that Malcolm became totally disabled in terms of kidney function was based on the fact that he could not do what it took, despite knowing that there could be an alternative totally disabled in terms of kidney function was based on the fact that he could not do what it took, despite knowing that there could be an alternative! This is a lesson for us all. On the other hand, in his defence, he had consulted with a panel of kidney experts who were all of the same opinion: the kidney could not be saved by cutting out the cancers with the kidney in vivo (in place in Malcolm's body). Also, I have to say that it appears that few surgeons could do this reconstruction work and I believe that David is the very best in the UK. If all the cases in the country that were not simple kidney cancer extractions were sent to him and the few other people who do such intricate work, they would be snowed under! However, it certainly pays to be persistent and refuse to give up.
Malcolm went into hospital two working days after our meeting with David Cranston. He had his kidneys cut out and the numerous tumours removed from his only functional kidney. David then reconstructed the kidney on the bench at 4 degrees C so that it would survive, and another transplant surgeon has then sewed it back in.
It is nerve wracking knowing that your best friend is going through such major surgery, and general anaesthetics carry their own risk. I didn't know when we would know if his kidney was going to survive being out of his body for hours and, therefore, I did not know if his decision to have this surgery would indeed keep him off dialysis. I had no idea when we would know whether he suffered from any internal bleeding (which would mean he needed another op). I organised appointments that day to keep me busy, but I must admit that I was like a cat on hot bricks.
The day was typical of this whole situation in giving me a roller coaster of emotions. Malcolm was due to go into surgery at 1.30 pm and David's secretary told me he should be out by 6 pm. I forced myself to wait a bit then I rang at 6.20 pm to find that he was still in surgery. I rang again at 7.20 pm, having disciplined myself to ignore each second ticking away. I was told he was still in surgery. I imagined all sorts of dark and awful things. I told myself firmly that only positive thoughts would help him. I was then told that he had been over 90 minutes late going into surgery due to problems with a generator. I calmed down. I was told that David Cranston would ring me when he finished.
David rang me at 7.55pm to tell me the operation went as well as could be expected – could not have gone better - that Malcolm was ok, and the kidney was working sluggishly, which was all that could be expected, given that it had been at 4 degrees C for at least 3 hours. He said we would know within 48 hours whether or not the kidney would survive. At 9 pm the considerate and courteous David rang me again to say that the kidney was already functioning quite well, so the operation was successful! What a result!
I rang Malcolm on the high dependency ward (scary name!) at 11.30 pm. He was amazingly talkative (I think he was high), albeit he sounded like Barry White on morphine (rather attractive if I ignored the slurring).
Malcolm made very good progress for the four weeks following his operation. He has since become very tired and now we have found out that he has severe anaemia. Apparently, this is not unusual with kidney patients because the kidneys make a hormone called EPO, which tells the bone marrow to make red blood cells. Another possibility is that the anaemia is caused by Addison's Disease, which is a shortage of hormones made by the adrenal glands. As I write we are in the hospital waiting to have blood tests that have been organised by a mainstream hormone specialist.
Just before Malcolm's operation, as I said above, we consulted Dr Callebout in Harley Street. Chris had suggested him and we found him covered on the extensive CANCERactive website. Dr Callebout does a good impression of being scatty, but in my view there is not much about cancer that he has not read and retained. He organised blood and urine tests that the mainstream physicians appear not to normally consider; some of which I understand are not normally carried out at all in the UK. These have highlighted that Malcolm still has a higher than normal level of cancer cells in his blood (we all have some) and that he suffers a number of shortages of substances like hormones and neurotransmitters. Had he not organised these tests we may not have had the conversations with Lucy Side (see below) that led her to refer Malcolm to a hormone specialist.
Dr Callebout has put Malcolm on a special eating and serious detox regime and a large number of point is that the main stream medical profession send one home to 'get better' and to carry on doing what one has always done…which resulted in the cancer in the first place. supplements and 'cancer zapping treatments' such as garlic, zeolite and Noscapine, an opium derivative that has been shown to kill cancer cells. The point is that the main stream medical profession send one home to 'get better' and to carry on doing what one has always done…which resulted in the cancer in the first place. Dr Callebout is working to get to the bottom of what caused it and put that right. His approach is exactly how Chris talks too – what might have caused it, and what might still be maintaining it?
Genetic faults and kidney cancer
So why did I tell you about Malcolm's mother and brother? While Malcolm was in hospital we had a consultation with a geneticist called Lucy Side. When the doctors found out about Malcolm's mother and brother they concluded that Malcolm must have a faulty gene. They were amazed that the doctors treating Malcolm's brother had not contacted Malcolm to organise for him to have a genetic test and to have a scan to check his kidneys. Had Malcolm's kidneys been scanned in 2005, there is a very high chance that he could have had one of the less invasive treatments such as ultrasound or cryology, which would have saved him from such invasive surgery and all the associated pain discomfort.
The doctors all thought the likely culprit was a gene called the Von Hipple Lindau gene. This scared me stupid because it seemed very likely to cause more trouble, probably in Malcolm's brain or spine. Also what was immeasurably awful was the prospect that my children had a 50 per cent chance of inheriting Von Hipple Lindau syndrome, or VHL, so although the chances were only around 1 per cent, there was a possibility I could outlive them all.
Once the tumour tissue had been analysed, it became clear that I would not have to face this horrible scenario. The likely culprit is now thought to be a gene called the Birt, Hogg Dubé (BHD) gene. The most likely manifestation of this is benign tumours on the face (hence the appearance of my mother in law's cheeks), which can be removed by laser treatment. The only really serious consequence of this very rare gene is that 40 per cent of the people who have the gene will contract kidney cancer. Once it is known that a person has the gene the medical profession will screen them at regular intervals. In other words, my husband and any children of mine who have this gene will have a much lower chance of dying from cancer than the average. After all, the reason for most deaths from cancer is that no one knew the patient had the cancer in the first place.
To anyone with a faulty cancer suppressor gene such as Von Hipple Lindau or Birt, Hogg Dubé, I would like to point out you have a good copy of the gene from the parent that does not have the syndrome. This protects you from cancer until something triggers a mutation in that gene. With kidney cancer, it is very likely to be toxins in your body that do this – toxins from the food you eat, from carbon monoxide in car fumes, from chemicals in household products or cosmetics etc. etc. Kidney cancer is often associated with the toxins that accumulate in the body. One is smoking, but Malcolm and his brother never smoked. Anyone can suffer kidney cancer as a result of the mutations caused by toxins, but if you have one faulty tumour suppressor gene your chances are much, much higher, so you have to be so much more careful than the average person. I recommend everyone goes to the CANCERactive web site – it tells you so much more about the possible causes of cancer.
do not easily take 'No' for an answer All that remains for me to say is that anyone who reads this article is likely to have cancer or be concerned about someone dear to them who has it. Please do not spurn traditional healing methods, give credence to 'alternative' treatments as they have so very much to offer, do not put yourself entirely in the hands of any doctor, do not easily take 'No' for an answer, and take ownership of your own health (or help your loved one to do so), and never, NEVER give up. No one should ever be given a death sentence.
My thanks go to David Cranston, Chris Woollams and the many, many people who have helped and encouraged us, have prayed for us and sent us their love and best wishes, all of whom continue so to do.
I sincerely hope our story helps others to realise that there are always alternatives; there is always hope.