The search for the primary cancer became a process of elimination. Some tests led to more tests but happily they all came back negative. Eventually, when all avenues to find a primary cancer had been exhausted, a meeting of doctors in Brisbane voted 16 to 17 for triple negative breast cancer1. Funnily enough, by that time I knew better than to ask what the odd one out had voted for 🙂
After three months of tests, this news was fantastic and relieved most of my stress even though it didn’t make much sense. Early stage breast cancer (disregarding type) had an 85% five-year survival rate compared to a 5% survival rate for cancer of unknown origin. That diagnosis was welcome in so many ways.
Diagnosis triple negative breast cancer
It was the breast surgeon who related the final diagnosis to me. Although a middle-aged specialist with lots of experience, he had not come across ”occult breast cancer” before. Occult breast cancer is cancer that is too small to be visible through imaging. His research had showed him that it occurred in the bigger centres in the United States once or twice a year and that radiation was as effective as mastectomy. Chemotherapy was warranted because of the number of lymph nodes involved and was estimated to increase my likelihood of survival by 25%.
Chemotherapy – yes or no?
From memory, the risk of the cancer spreading within 5 years was estimated at 65%. With chemotherapy, that risk could be brought down to about 40%. The doctors gave me access to an online software tool that allowed one to calculate the efficacy of chemotherapy, given (a) the size of the original tumour, (b) the number of lymph nodes involved and (c) a rating for the aggressiveness of the cancer.
I was grateful to hear the statistics on radiation vs mastectomy, but chemotherapy was very worrying. In my research I had come across a lot of websites with awful horror stories about chemo. While I didn’t believe everything I read, it is accepted fact that there are major health risks with the chemotherapy drugs so I wanted to be as certain as possible of the benefits and risks before going ahead. After all, they couldn’t find a primary cancer in my body or any new metastases, so I didn’t want to create a problem that may not have existed. There was no evidence that I had cancer. Healthy human bodies kill cancer cells all the time. Could my primary cancer have been killed also? While chemotherapy is not always the monster that some of the alternative websites make it out to be, it certainly is not good for a healthy person to take. It can have very nasty side effects and can even cause cancer later in life. The question is always one of risk versus benefit.
So it was back to the computer for me… (1) to see the studies on the chemotherapy and (2) to research occult breast cancer. Thankfully, a good friend of mine at university gave me a password to access the online research databases that the doctors use.
(1) The figure of 25% benefit from chemotherapy was taken from a summary study based on tens of thousands of breast cancer cases around the world over many years. Because the pharmaceutical industry make a lot of money from cancer drugs, I was distrustful of these figures and wanted to confirm them with my own research. By looking briefly at all the studies that this summary one was made up from, I was able to confirm that 25% was indeed the right estimate.
(2) At that time there were 24 documented cases of occult breast cancer in the USA during a period spanning 20 years. These studies also confirmed my surgeon’s advice that radiation was effective as mastectomy. Whether chemotherapy was warranted or not depended on the number of lymph nodes involved.
Researching on the laptop
Chemotherapy or alternative treatments?
The oncologist wanted to give me six rounds of chemo using a three-drug regime. This seemed to be quite common for breast cancer patients. The drugs were doxorubicin, docetaxel and cyclophosphamide. Research on the side effects of these drugs showed that doxorubicin could cause heart damage. This side-effect really worried me as my mother had heart problems that I had no wish to develop.
To digress slightly, my parents had heard a knowledgeable sounding man from their church give a talk on cancer many years ago. As soon as I knew about my cancer I was on Victor Trosky’s waiting list. Vic is a retired microbiologist and nutritionist who had 20 years’ experience treating cancer patients at a major Brisbane hospital. I was very happy when he finally managed to fit me into his busy schedule which was fairly soon after my surgery. We had at least 3 long conversations on the phone where he gave me advice and information. In his opinion it was breast cancer that was too small to detect. He told me about many natural substances which were helpful for breast cancer (some of which I knew about) and got me to start a very strict anti-breast cancer diet. He said he was not in favour of chemotherapy for cancer that was undetectable through imaging. By the time of the diagnosis, his diet had turned me into a very healthy feeling and looking human being – I wanted to stay that way.
Making the decision on having chemotherapy was really tough. Like all medical treatments, one should weigh up the risks and benefits carefully, especially if there is much risk. No risk treatments seemed best, so I researched all the alternative cancer treatments I could find that seemed plausible. These included The Gerson Therapy, The Budwig Therapy, Dr John Holt’s expensive radiowave therapy (which now appears to be discredited) and others. The problem was that as hard as I tried, I could not find reliable figures on the effectiveness of these therapies. Having young children, I felt the need to do everything possible to stay alive for the coming years.
Making the decision on whether or not to have chemotherapy was the hardest decision I have ever made
Confirming the figures for chemotherapy really helped me make my decision as it was the only treatment with hard and fast figures. None of the alternate therapies could show me dependable figures (backed up by independent third parties) on survival benefit – let alone a 25% better chance of living.
Nevertheless, the heart damage that can be caused by doxorubicin was still worrying me. There was also information coming to my attention that it was not very effective in triple negative breast cancer. With my mind made up that chemotherapy was the best option available I asked my oncologist if I could do the therapy without the doxorubicin.
She then offered me a different two-drug regime called TC meaning a taxane (docetaxel) and carboplatin. Now these drugs do have nasty side effects, but not ones that effect vital organs – in the short to medium term at least. I was now reasonably happy to have chemotherapy with the TC regime.
The next part in the series shows how I made the decision on using complementary therapy as well as chemotherapy. It shows the books and other sources that were helpful and the actual supplements and foods I consumed.
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1. “If you have triple negative breast cancer, this means that your cancer does not have any of the three receptors commonly found on breast cancer cells (oestrogen, progesterone and HER2).”
(Source: Breast Cancer Network Australia (BCNA), accessed November 2018
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