Your posting is very interesting to me. I have what my Oncologist calls a trivial cancer [yes, it is bizarre to see those two words linked like that] and no therapy other than lumpectomy is happening. This is based on statistics that treatment like hormones and/or chemo will cause me significantly more damage [morbidity and mortality] than benefit. The radiation picture slightly more complex but at its very best it could only offer me a 3% benefit ie., lower my risk of local recurrence by 3%. Radiation would have no effect on my length of life but when I read up on it, it has no effect on any of our mortality rates. Its a long story but in a nutshell, any benefit I and others in my situation get from radiation is statistically wiped out by increased death rate from non-cancerous conditions [which are probably caused by the radiation itself]. Most radiologists never tell patients this fact! Anyway this is a long way of explaining I am having no treatment apart from lumpectomy but the reasons are very different from yours.I am still to-ig and fro-ing with radiation oncologists as they seem to believe a 3% benefit is something to get excited about. Its going back to their case review team for further debate. I found out during this process that the medical protocols for additional therapy after surgery for breast cancer have two furious debates occuring - one is at my end which is the very early stage of breast cancer and the other is with the far more advanced cases and essentially, it is about risks versus benefits. Unless patients are really pushy and constantly prove they have the resilience, or personality or determination for it, most medicos will squib out on giving us the full facts. Their view seems to be to only give it to us when we prove again and again [by crash tackling them and demanding the information and then not falling apart when we get it] that we can handle it. I suspect this has nothing to do with protecting our sensibilities and everything to do with the doctors being cowards, emotionally ill equipped to deal with the tough aspects of their job, a assumption patients are not very bright and a touch of concern that if we get too much information we may not meekly follow the treatment path they have laid out for us. We also need to be vocal about telling them [mostly more than once] about what our highest, medium and lowest priorities are as the doctors make a lot of assumptions about what they think they are. I actually listed mine and handed the list to them with a statement insisting that all treatment options they examine be assessed for compliance against my priorities. I have not had my fortitude about no further treatment tested yet by a more seriousn diagnosis or more devastating set of statistics, so until then,I cannot state with absolute confidence what I would do, but I would seriously consider the path you are taking. I have seen so much so called heroic medical intervention - which is extremely painful,costly and damaging to quality of life - and the actual increase in eg.,life span has been weeks or months. To me its just not worth it in terms of quality of life if that extra time is spent in surgery, in pain, having chemo or suffering terrible radiation induced side effects. This path is clearly not most people's if the few postings on it are the yardstick, but life at any cost and irrespective of the degree of suffering involved to remain technically alive and breathing simply are not worth it to me.
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Your posting is very interesting to me. I have what my Oncologist calls a trivial cancer [yes, it is bizarre to see those two words linked like that] and no therapy other than lumpectomy is happening. This is based on statistics that treatment like hormones and/or chemo will cause me significantly more damage [morbidity and mortality] than benefit. The radiation picture slightly more complex but at its very best it could only offer me a 3% benefit ie., lower my risk of local recurrence by 3%. Radiation would have no effect on my length of life but when I read up on it, it has no effect on any of our mortality rates. Its a long story but in a nutshell, any benefit I and others in my situation get from radiation is statistically wiped out by increased death rate from non-cancerous conditions [which are probably caused by the radiation itself]. Most radiologists never tell patients this fact! Anyway this is a long way of explaining I am having no treatment apart from lumpectomy but the reasons are very different from yours.I am still to-ig and fro-ing with radiation oncologists as they seem to believe a 3% benefit is something to get excited about. Its going back to their case review team for further debate. I found out during this process that the medical protocols for additional therapy after surgery for breast cancer have two furious debates occuring - one is at my end which is the very early stage of breast cancer and the other is with the far more advanced cases and essentially, it is about risks versus benefits. Unless patients are really pushy and constantly prove they have the resilience, or personality or determination for it, most medicos will squib out on giving us the full facts. Their view seems to be to only give it to us when we prove again and again [by crash tackling them and demanding the information and then not falling apart when we get it] that we can handle it. I suspect this has nothing to do with protecting our sensibilities and everything to do with the doctors being cowards, emotionally ill equipped to deal with the tough aspects of their job, a assumption patients are not very bright and a touch of concern that if we get too much information we may not meekly follow the treatment path they have laid out for us. We also need to be vocal about telling them [mostly more than once] about what our highest, medium and lowest priorities are as the doctors make a lot of assumptions about what they think they are. I actually listed mine and handed the list to them with a statement insisting that all treatment options they examine be assessed for compliance against my priorities. I have not had my fortitude about no further treatment tested yet by a more seriousn diagnosis or more devastating set of statistics, so until then,I cannot state with absolute confidence what I would do, but I would seriously consider the path you are taking. I have seen so much so called heroic medical intervention - which is extremely painful,costly and damaging to quality of life - and the actual increase in eg.,life span has been weeks or months. To me its just not worth it in terms of quality of life if that extra time is spent in surgery, in pain, having chemo or suffering terrible radiation induced side effects. This path is clearly not most people's if the few postings on it are the yardstick, but life at any cost and irrespective of the degree of suffering involved to remain technically alive and breathing simply are not worth it to me.
July 29, 2010 - 12:54amThis Comment
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