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Jean · 07-06-2006, 11:11 PM

Chelle,

When we are dx with bc it is a shock - we are all aware that 1 of 7 will be dx.
But do we ever really believe that one will or could be us? Especially when the woman is so very young. This is a shocking disease becasue at any age NO one is ready or prepared. Top that with running to find information about the disease and then proceed to discover all the research and new meds that are out there this takes much time. You visit top onc. and first believe that of course these men and women are correct, after all this is their profession.
But like everything else in life - whether it is a butcher, baker or candle stick maker - they are human and of course the medical profession will follow protocol for fear of being sued. As Dr. Slamon said - doctors have to practice medicine, it is after all an art and a science. Most important of all and all the women on the site will say the same thing "We must be our own advocates in fighting this disease." The first onc I saw at Cornell was arrogant and refused my request for a FISH test to confirm if I was her2 !
Could you even imagine a dr. saying no? Then I demanded it and told her to do as I requested which took another month. I finally had to fire her and hire a new Dr. who did order the FISH. This all sounds strange and as I have always said the dx. was easy it was the journey that was difficult. If you are an early stager it can almost be worst because you are looked at as if you are just a little bit pregnant - when I heard I had her2 /+++ size of my tumor was not my issue the type and aggressive nature of my cancer was my focus.
You have found this wonderful site which has the most powerful women who dig and search and turn over every stone of information and cutting edge information. So you are in the right place here with a wealth of brillant
women and men. We may have had the bad luck of getting bc - but we also have gained in finding this site. It is a powerful instrument. Would you believe today I had my 3rd chemo trt. and when I met with the onc. that Dr. Slamon referred to me in New Jersey the subject of the TOPO 11 came up
and he said the following, well I hope Dr. Slamon is correct with the TOPO 11
etc. I just looked at him and realized that his ego is amazing - I then asked him do you thing he is wrong, he replied, " well he is brillent and is usually correct," I asked myself then why did you even make this comment or said what you did? He is a great dr. in his own right but, that ego had to surface because he had to take orders from Dr. Slamon. So you see we not only have to deal with the bc itself but the emotions of the professionals who often times do not like to be questioned. The secure ones do not mind questions or time spent to answer or review new research. Much has changed with the internet and some dr. do not appreciate the contact and the information available to their patients. No all the onc. for many have wonderful dr. who will sit down and discuss the most important aspect of their health care. You would not keep anyone whom you are employing who does not treat you, the customer correctly. If your dr. does not treat you fair and correct, fire them and get the medical attention that you should have and deserve to have. If I treated any of my clients in this manner I would be concerned that I would out of business or worse brought up on charges. It will get better because you are aware now and will protect yourself and you will get your questions answered. Even if you have to do the research yourself. Let me know when you hear from Lillie - she is great at returning emails. Wishing you all the best...

Jean

07-06-2006, 11:11 PM	#10
Jean Senior Member Join Date: Oct 2005 Location: New Jersey Posts: 3,154	Chelle, When we are dx with bc it is a shock - we are all aware that 1 of 7 will be dx. But do we ever really believe that one will or could be us? Especially when the woman is so very young. This is a shocking disease becasue at any age NO one is ready or prepared. Top that with running to find information about the disease and then proceed to discover all the research and new meds that are out there this takes much time. You visit top onc. and first believe that of course these men and women are correct, after all this is their profession. But like everything else in life - whether it is a butcher, baker or candle stick maker - they are human and of course the medical profession will follow protocol for fear of being sued. As Dr. Slamon said - doctors have to practice medicine, it is after all an art and a science. Most important of all and all the women on the site will say the same thing "We must be our own advocates in fighting this disease." The first onc I saw at Cornell was arrogant and refused my request for a FISH test to confirm if I was her2 ! Could you even imagine a dr. saying no? Then I demanded it and told her to do as I requested which took another month. I finally had to fire her and hire a new Dr. who did order the FISH. This all sounds strange and as I have always said the dx. was easy it was the journey that was difficult. If you are an early stager it can almost be worst because you are looked at as if you are just a little bit pregnant - when I heard I had her2 /+++ size of my tumor was not my issue the type and aggressive nature of my cancer was my focus. You have found this wonderful site which has the most powerful women who dig and search and turn over every stone of information and cutting edge information. So you are in the right place here with a wealth of brillant women and men. We may have had the bad luck of getting bc - but we also have gained in finding this site. It is a powerful instrument. Would you believe today I had my 3rd chemo trt. and when I met with the onc. that Dr. Slamon referred to me in New Jersey the subject of the TOPO 11 came up and he said the following, well I hope Dr. Slamon is correct with the TOPO 11 etc. I just looked at him and realized that his ego is amazing - I then asked him do you thing he is wrong, he replied, " well he is brillent and is usually correct," I asked myself then why did you even make this comment or said what you did? He is a great dr. in his own right but, that ego had to surface because he had to take orders from Dr. Slamon. So you see we not only have to deal with the bc itself but the emotions of the professionals who often times do not like to be questioned. The secure ones do not mind questions or time spent to answer or review new research. Much has changed with the internet and some dr. do not appreciate the contact and the information available to their patients. No all the onc. for many have wonderful dr. who will sit down and discuss the most important aspect of their health care. You would not keep anyone whom you are employing who does not treat you, the customer correctly. If your dr. does not treat you fair and correct, fire them and get the medical attention that you should have and deserve to have. If I treated any of my clients in this manner I would be concerned that I would out of business or worse brought up on charges. It will get better because you are aware now and will protect yourself and you will get your questions answered. Even if you have to do the research yourself. Let me know when you hear from Lillie - she is great at returning emails. Wishing you all the best... Jean Last edited by Jean; 07-07-2006 at 12:42 PM..