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AlaskaAngel · 05-15-2014, 04:25 PM

Thanks, Suzan.

You and I can't undo what we did. But there are some things about the way it is being done and not questioned by professionals that for me raise genuine serious questions about the ethics involved when it comes to "informed consent" -- especially now that plenty of us have gone through it and there should be enough data about it to choke on.

What is most questionable is the stance that new treatments are done by comparison with a treatment that is so minimally effective on the whole -- chemotherapies.

By now we should have found out whether or not there is a group of HER2 positive patients who would be successfully treated with trastuzumab used without chemotherapy.

As things stand, patients frequently tend to believe the notion that "adding chemotherapy to trastuzumab is more effective", when in reality we do not know if it is the use of the trastuzumab that has made the difference for patients. We have not had the chance to find out whether there is synergy between the two treatments, or even whether any potential synergy doesn't compensate for the added risks with chemotherapy in earlier stage HER2 positive bc.

It could very well be true that something quite less damaging than chemotherapy itself is what is "synergistic" with trastuzumab. It could be due to the forced transition to a menopausal state alone, plus the trastuzumab. And if that is true, there are less harmful ways than chemotherapy to accomplish that.

It is keeping us in the dark ages for treatment, by scaring early stage patients into doing treatment that hasn't been fully analyzed and evaluated.

These are things that are not explained to patients who are only minimally at risk and are being asked to seriously consider treatments that are on the whole not even that effective.

Another question I have is, for the online tools that estimate risk, why is there no allocation of percentage of risk given to the likelihood that for some patients the chemotherapy itself could result in recurrence, since we do know that chemotherapy is a substance that can cause cancer? Health care practitioners who give it have to be very careful about their own exposure to it because it is hazardous.

A.A.

05-15-2014, 04:25 PM	#9
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Informed consent Thanks, Suzan. You and I can't undo what we did. But there are some things about the way it is being done and not questioned by professionals that for me raise genuine serious questions about the ethics involved when it comes to "informed consent" -- especially now that plenty of us have gone through it and there should be enough data about it to choke on. What is most questionable is the stance that new treatments are done by comparison with a treatment that is so minimally effective on the whole -- chemotherapies. By now we should have found out whether or not there is a group of HER2 positive patients who would be successfully treated with trastuzumab used without chemotherapy. As things stand, patients frequently tend to believe the notion that "adding chemotherapy to trastuzumab is more effective", when in reality we do not know if it is the use of the trastuzumab that has made the difference for patients. We have not had the chance to find out whether there is synergy between the two treatments, or even whether any potential synergy doesn't compensate for the added risks with chemotherapy in earlier stage HER2 positive bc. It could very well be true that something quite less damaging than chemotherapy itself is what is "synergistic" with trastuzumab. It could be due to the forced transition to a menopausal state alone, plus the trastuzumab. And if that is true, there are less harmful ways than chemotherapy to accomplish that. It is keeping us in the dark ages for treatment, by scaring early stage patients into doing treatment that hasn't been fully analyzed and evaluated. These are things that are not explained to patients who are only minimally at risk and are being asked to seriously consider treatments that are on the whole not even that effective. Another question I have is, for the online tools that estimate risk, why is there no allocation of percentage of risk given to the likelihood that for some patients the chemotherapy itself could result in recurrence, since we do know that chemotherapy is a substance that can cause cancer? Health care practitioners who give it have to be very careful about their own exposure to it because it is hazardous. A.A.