Hello again - I am assertive - its true! I feel the cancer/surgery/anesthetic/shock etc has knocked a few IQ points off me and I am not as sharp as I was pre breast cancer, but I am confident researcher and able to process complex information outside my professional field. Those of us with slower early cancers also have the time to research. I realise not everyone has that luxury. I actually had to research and compile complex data from many sources during my working life so doing it is second nature after 30 years.
I work outwards from a few core principles - 1. its my body and I decide what will be done to it - no one else. I refuse to be railroaded or terrorized into submitting to anything and innately distrust any professionals who pull those tricks to ensure compliance and 2. medical advice is just that - advice. It's based on statistics and most medical stats that underpin treatment for serious conditions like cancer are weighted towards the heavier treatment end of the scale, as most medical researchers can't get human ethics permission and/or are too nervous/slow about researching less intervention methods. That and scared of being sued for undertreatment. So some of it is a butt covering exercise for them which has not much to do with what is in the patients best medical interests.
If you go to the 2000 report on Early Breast Cancer issued by the Australian National Health and Medical Research Council under the chair of Professor Christine Ewan, there is an very sound discussion of these issues from a strong informed patient consent model [with which I strongly concur] and a coverage of radiation in the radiation chapter, as well noting the research gaps for minimally invasive, ultra slow growing cancers. It is a good report to start with as its so fierce and direct about patient rights. Yes, its now 10 years old so research on early breast cancer treatment and radiation protocols post 200 needs to be looked at closely as well, which is what I also did. The researchers are proposing for example that women over 70 with indolent tumours may omit radiation but I note this was also the "safest" breast cancer patient group to commence this type of research on as if they got it wrong, well, at age 70 a life is almost lived anyway. There is still a research gap for us in the under 70 age groupings. Doctors usually don't tell us about raging controversies in medical treatment in order to to avoid what they call "treatment anxiety" but which I call a proper outline of treatment issues. They actually get taught NOT to tell us about these controversies and one of the major ones is how much treatment is overtreatment ie., unnecessary treatment for early breast cancers. Medical research takes many, many years to percolate down into daily hospital practice so the radiation protocols and advice we get are normally at least 10 years old for a start. Many medicos are also too busy to read latest medical journals in their area and so are not as up to date as those that read serious medical journals regularly as I now do on my topics of interest. There are credible medical data bases like PubMed that email you the most recent journal articles on your topics. I also subscribe to all the breast cancer trial sites all over the world so stay up to date with what they are testing and where it is up to on the trials schedule. Believe it or not I have actually had the radiologist sniffily dismiss a trial I drew to his attention of the Targit intraoperative device as a mere experiment. I see its an international randomixzed trial level 4, with solid data for the past 10 years and credible research presented at the most prestigious international breast cancer conferences, which refer to this as the new gold standard of treatment. It will probably be available in Australian public hospitals in another 10 years! At the moment only Charles Gairdner in Perth [part of the international randomiszed trial team we are not eligible to participate in] and a hospital in Melbourne called Peter MacCullum [open to private patients who opt for it] offer this in Australia. Those of us with significantly less aggressive tumours [sometimes called indolent or in my case, trivial] are lumped in with everyone else when it comes to radiation protocols and our access to less damaging forms of radiation in the event we wanted to access it are limited in many ways, some of which I have described here but by many other ways. I hope this post gives you the flavour of how I started and what I looked at.
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Hello again - I am assertive - its true! I feel the cancer/surgery/anesthetic/shock etc has knocked a few IQ points off me and I am not as sharp as I was pre breast cancer, but I am confident researcher and able to process complex information outside my professional field. Those of us with slower early cancers also have the time to research. I realise not everyone has that luxury. I actually had to research and compile complex data from many sources during my working life so doing it is second nature after 30 years.
August 16, 2010 - 3:10amI work outwards from a few core principles - 1. its my body and I decide what will be done to it - no one else. I refuse to be railroaded or terrorized into submitting to anything and innately distrust any professionals who pull those tricks to ensure compliance and 2. medical advice is just that - advice. It's based on statistics and most medical stats that underpin treatment for serious conditions like cancer are weighted towards the heavier treatment end of the scale, as most medical researchers can't get human ethics permission and/or are too nervous/slow about researching less intervention methods. That and scared of being sued for undertreatment. So some of it is a butt covering exercise for them which has not much to do with what is in the patients best medical interests.
If you go to the 2000 report on Early Breast Cancer issued by the Australian National Health and Medical Research Council under the chair of Professor Christine Ewan, there is an very sound discussion of these issues from a strong informed patient consent model [with which I strongly concur] and a coverage of radiation in the radiation chapter, as well noting the research gaps for minimally invasive, ultra slow growing cancers. It is a good report to start with as its so fierce and direct about patient rights. Yes, its now 10 years old so research on early breast cancer treatment and radiation protocols post 200 needs to be looked at closely as well, which is what I also did. The researchers are proposing for example that women over 70 with indolent tumours may omit radiation but I note this was also the "safest" breast cancer patient group to commence this type of research on as if they got it wrong, well, at age 70 a life is almost lived anyway. There is still a research gap for us in the under 70 age groupings. Doctors usually don't tell us about raging controversies in medical treatment in order to to avoid what they call "treatment anxiety" but which I call a proper outline of treatment issues. They actually get taught NOT to tell us about these controversies and one of the major ones is how much treatment is overtreatment ie., unnecessary treatment for early breast cancers. Medical research takes many, many years to percolate down into daily hospital practice so the radiation protocols and advice we get are normally at least 10 years old for a start. Many medicos are also too busy to read latest medical journals in their area and so are not as up to date as those that read serious medical journals regularly as I now do on my topics of interest. There are credible medical data bases like PubMed that email you the most recent journal articles on your topics. I also subscribe to all the breast cancer trial sites all over the world so stay up to date with what they are testing and where it is up to on the trials schedule. Believe it or not I have actually had the radiologist sniffily dismiss a trial I drew to his attention of the Targit intraoperative device as a mere experiment. I see its an international randomixzed trial level 4, with solid data for the past 10 years and credible research presented at the most prestigious international breast cancer conferences, which refer to this as the new gold standard of treatment. It will probably be available in Australian public hospitals in another 10 years! At the moment only Charles Gairdner in Perth [part of the international randomiszed trial team we are not eligible to participate in] and a hospital in Melbourne called Peter MacCullum [open to private patients who opt for it] offer this in Australia. Those of us with significantly less aggressive tumours [sometimes called indolent or in my case, trivial] are lumped in with everyone else when it comes to radiation protocols and our access to less damaging forms of radiation in the event we wanted to access it are limited in many ways, some of which I have described here but by many other ways. I hope this post gives you the flavour of how I started and what I looked at.
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