Living with Cancer

A personal account of my experiences living with someone diagnosed with ovarian cancer.

In July 2015 my partner attended our local trust for a routine ultrasound scan of her abdomen. For 7 years prior, the team had been checking on a small ovarian cyst about the size of a peanut. The cells inside it had been checked and were unremarkable. This year however it had grown to approx 12cm across. We were told there were 3 possibilities, 1. Benign, 2. Borderline, 3. Tumour. 3 weeks later the large mass was removed, with both ovaries, her uterus, and omentum as the on table frozen section was borderline. There was evidence that the tumour had previously split allowing cells to spill into the abdomen. These cells were identified in the fluid washout that was removed before closure. The histopathologists are still trying to determine the cell make up of the tumour. Their best guess is that even though the cells make up is unusual for ovarian Ca (less than 2% of all ovarian Ca), is that it is the primary tumour. To make sure they ordered a direct vision survey of her upper and lower GI tract, again stating that it is unlikely to have come from the small bowel. A CT scan from neck to pubic bone had shown no unusual cells. We are therefore left with probably a 1c or a 3 stage cancer. She has now started a course of chemotherapy, including Carboplatin and Taxol. 2 very aggressive drugs with potentially massive side effects, on the understanding that is the standard treatment regime for all ovarian Ca. It is based on the ICON 1 study published in 2001. A study that would probably not be published today as it is pathetically inadequate in its design, results and conclusions.

If I can see that as a nurse who doesn’t even work in this clinical specialist area, then why can’t others who do work in those areas? If they can, then why do they still use it as a basis for today’s practice? Is it because there simply isn’t anything else to base it on? What about, common sense and experience for a start? Our reliance on academic work as “evidence” for practical solutions begins to make less and less sense to me. I have challenged this type of blind obedience to flawed academic work in infection control for years. Simply identifying the confounders/ ex tremulous variables that you can’t measure may be enough for academic excellence, but in practical terms it loses a massive amount of value. Perhaps we should look at these studies and use common sense and experience to determine treatment/ processes or pathways?

I have many conflicting feelings about the individual oncology service we are dealing with at this point, and with the state of cancer services outside the big 4 cancers. Whilst I am very glad that my partner is being cared for by such a group of professional and intelligent people, I do feel that they have either no ability to look away from a standard pathway of care, or they simply aren’t allowed to look outside of it for answers. I have seen comments on the internet such as, “the drugs are the same as they were 25 years ago”, “we are just looking at different ways of using them to reduce side effects”.

In fact my partner has joined the ICON 8 study group, which is also looking more and more like it will be of little practical use to oncologists or patients. We may well allow her to continue as a part of this study, however flawed, as at least it appears to be an improvement on ICON 1. Again ICON 8, seems to be an academic paper which should be used by experienced clinicians to help determine a course or patient pathway, not the definitive way of treating all patients with this disease.
Current methodology in oncolgy seems to treat the cancer based on the area that the cancer was found in, not the type of cells found. To me as an infection control specialist, it is the equivalent of finding E Coli in the lung and treating the patient with drugs for TB because TB is found in the lung and E Coli should not be there. In infection control, we deal with the active micro organism, and I can’t understand why oncology don’t use the same approach. In my practice, I have looked at dealing with 3 types of foreign pathogen in humans, Viruses, Bacteria and Fungi. All have different cell make up, and life cycles, different environments they prefer and different defence mechanisms. The more I look at cancers, the more I see similarities, and the differences as with the other 3. I now have 4 major groups of foreign proteins as harmful pathogens to deal with in the body.

It is likely that my partner has an element of musicnous Ca in the tumour that was removed, as well as endometrioid and possibly some serous. Her regime will only deal with the endometrioid and the serous, but recent papers clearly state that in late stage musicnous ovarian Ca, the current regime will not work. There is no evidence either way for early staged disease, yet I am confounded by the expression “there is no evidence” that it won’t treat early staged disease. My issue, isn’t so much about there not being any studies to help, but the lack of impetuous to simply say, “this patient doesn’t fit this pathway” let’s use our best judgement based on experience and a logical approach, and invent one for her. I think Lord Sachi is right to get a bill passed in parliament that will allow clinicians more flexibility to do just that. I hope it gets passed, and that it will do as intended, and allow experienced clinical judgement and insight to prevail over poor quality research to override the judgement of some of our brightest minds.

I am deeply concerned about cancer research and cancer charities. How research is funded, who conducts it, and how charities spend the money donated to them. I recently visited a law firm in Doncaster on another matter, to see very well made brochures that announced that “Cancer research uk” one of our top charities, will pay for a basic will for any cancer patient regardless of income. The next day, on our oncology ward, I saw another brochure entitled “so you have cancer”. I am sure both brochures could be argued by some to be necessary, I would absolutely question if this charity should be the one providing them and paying lawyers to produce wills. If a person has cancer they can like he rest of us who could die on the road tomorrow or from a heart attack, go to WH Smiths and buy a simple will, and fill it in. I know how much it costs to design and produce this type of brochure, they are expensive. In my view, when I put money into a tin labelled “Cancer research” I want the money to go to just that – research.

I have tried to find out who is doing most of the research to date, and more importantly who’s funding it. To date, it appears that although University labs seem to be doing the majority of the work, the majority of the funding seems to be moving from large pharmaceutical companies. In fact it seems charity money, may also be given to large Pharma companies to be used in University labs sponsored by guess who, the Pharma companies.

The first article I read when I Googled, “natural cancer killers”, criticised large Pharma companies for not looking more at natural THINGS that have been shown to have many properties from actively killing cancer cells, reducing the workload of the immune system elsewhere in the body to stopping the cancer cells from hiding from our immune systems. As a businessman, I understand why they wouldn’t do that – the likelihood is, if they found an active chemical in say carrots (there is actually), then synthesised it somehow patented it and tried to sell it, people may just go out and eat bags of carrots. There is therefore no return for their investment. In infection control, although everyone at some point in their life will probably say “prevention is better than cure” there is absolutely more money in cure than prevention, and that is based on “evidence”. How do we prove that someone didn’t get an infection or cancer because they ate a carrot every day. Far easier to prove that someone had a disease and now hasn’t. There is still the matter of did the drugs cure it or our own immune system? I do believe the cancer charities have a massive role to play in this, as profit should not be their motive.

I have been involved in medical issues as a medical professional in various roles and in Medicines various forms for 35 years now. I have had very little to do with the actual treatment of cancer patients, other than in surgery. I have been fortunate to work in surgery, trauma and infection control for most of my career. I have been utterly disappointed in the field of oncology outside the big 4 cancers (breast, lung, prostate and cervical). I am disappointed that no decent research is available to help guide clinicians, the drugs have not been further developed over the last 25 years, but more than anything In the lack of ability or willingness to look outside convention when someone presents that is out of the ordinary. Perhaps this last feature is the result of an ever increasing reliance on academia to solve practical problems, rather than as an aid to guide experience and logical approaches.

Now I have said all of that, we are in fact very fortunate in some ways that my partner is a very bright Consultant anaesthetist. Her conventional medical/ scientific brain has turned from issues to do with anaesthetics and pain, to oncology. She has now extensively researched just about every paper written in the last 20 years on ovarian cancers, and then a wider look at other forms of cancer, drugs used to treat cancers and current treatment regimens/ protocols across the world. This has in one hand frightened her, on the other allowed us both to question the treatment proposed confidently. Her ability to do this has left me able to look at other options available. I have extensively researched (I must also thank my brother John and Eric who’s wife Cyndi died recently of an advanced cancer) and to supplement her conventional medicines with natural foods and additives that are scientifically researched and have proven properties. This is why “V’s” protocol came to life. No there are no doubled blinded stand on your right leg facing east studies. I have applied the same logic to this as I do to infection control, in that I do not believe outcome studies, they are always flawed because they do not measure all variables that affect outcome. I feel that outcome studies should not be taken as anything other than more information to base decisions on. Simply put, I don’t need a paper to tell me that if I reduce bacterial load in or around a wound it should reduce the chance of infection. In most cases the studies to prove the case would be impossible to do. The same logic applied to this tells me that if an active chemical in broccoli shows that it reduces the ability of cancer to hide from the human immune system, then it may well do some good. Please feel free to read the PDF that describes the reasoning behind V’s protocol, as this will give you a lot of information about the natural ingredients in the protocol and their reasons for being in it. It also outlines other things that you can add in if you feel you want to.