Originally published in icon Autumn 2008
I have been diagnosed with triple negative breast cancer. It is difficult to get an idea from my oncologist as to what to expect as he says we should wait and see how I respond. Everything I have read on it says it is a really aggressive disease with few treatments that work. Should I consider going for alternative treatment instead?I have been diagnosed with triple negative breast cancer. It is difficult to get an idea from my oncologist as to what to expect as he says we should wait and see how I respond. Everything I have read on it says it is a really aggressive disease with few treatments that work. Should I consider going for alternative treatment instead?
I can appreciate the impression you have got from much of the information published to date but I think the perspective is changing a little on triple negative cancer. Triple negative means that the cells are not expressing oestrogen, progesterone or Her2 receptors. Therefore the treatment approaches of hormone therapy and some of the newer targeted drugs such as herceptin and lapatinib will not work on these cells. We know the traditional chemotherapies can vary in response rates but especially when treated early there are recorded cases of women with triple negative cancer being cured with chemotherapy. There is also a trial taking place of Abraxene and Avastin which are newer targeted treatments about which there is a degree of optimism.
One American study gave prior to surgery to see what sort of response the chemotherapy had; those that responded well went on to have a higher cure rate. They also found that if recurrence did occur it was within three years of diagnosis, and not the longer term recurrences we see with other types of cancer.
If your oncologist is offering that to you it would give you information about whether chemotherapy is likely to be a successful option to continue post operatively, or indeed to consider more alternatives. If you do pursue the chemotherapy route, there are several approaches such as hyperthermia you can use to enhance the effectiveness of it and working with a good integrative practitioner or programme can both support you and keep you well. I hope that wider perspective helps.
I have prostate cancer which I was originally told was aggressive, though confined to the prostate. I refused radiotherapy and in combination with hormone therapy I embarked on a natural approach using diet and supplements. Since then my approach has done well, on occasion I reduced my hormones to lessen side effects. Recently my PSA has started to rise slowly and I was looking at different ways of dealing with it. My doctor put me forward for a clinical trial but the research team turned me down on the basis that I had not followed the normal treatment route. I am absolutely gutted that I will not be allowed to access new treatments because I exercised some choice in my treatment. Coupled with the news that we can’t pay for treatments without paying for everything privately means that I have no orthodox treatment options other than ones which are likely to have very little effect. To compound this they are negative about my CAM efforts which I firmly believe have been just as effective and helpful without my damaging my body. I am sorry to rant on but it appears the system just pushes you into a situation whereby you comply with being processed through the oncology system and put up with anything they throw at you. If you decide to exercise some choice and control you are then cast aside without help because you do not fit the mould.
I completely understand your frustration and it does appear that as people are becoming more informed and proactive the oncology service is not currently flexible enough to accommodate this. Clinical trials measure effect in a very uniform so it rules out other possible influences. However it is certainly difficult for researchers to guarantee that other influences may not have been present. It is worth checking some of the trials taking place in smaller hospitals as they may have more open criteria than the larger trials.
Your other point about not being able to top up your treatment is something I feel very strongly about. I think the current ruling is ridiculous and immoral. We do not live in an equal society unfortunately and to say that we all have to dumb down treatment to retain equality is ludicrous. It does not reflect access we have to other services in life and the only society where that approach operates is a communist one.
There are many cancer areas in which are not serving people well, the argument for more natural cost effective approaches could not be stronger. But nobody is listening. I hope but am not confident that the future may bring people more of an oncology service they are asking for rather than one they are told they must have.