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03-28-2007, 11:01 AM

Thanks Susan and everyone else,

Next time I'll be less lazy and do a search as the information on your previous post gave me the answers I needed to feel less threatened. I noticed another thread running through everyone's response: the "my medical team doesn't believe me" thread. That's the story of a lot of our lives, and one of the more annoying aspects of this disease. Although I can sympathize in part with our doctors, nurses, technicians, who hear so many complaints all day every day that they discount some of what we tell them, still I hate it and I some times wonder what the purpose is in seeing my oncologist every six weeks. Just another occasion to show my downsized, dimpled, scared, blue breast. I've gotten very good at feeling for lumps and bumps and will probably find them before he does. Of course, I then go home and start my internet searches tryng to find the answers for myself.

I had an interesting day last Friday. My sister, who teaches a doctoral program in nursing, was teaching a class on medicine and technology and the use of the internet by medical consumers. Most of her students are nurse practitioners and at least half (six) are in oncology. Margaret asked me to talk to them about my experiences in using the internet to do research on my own disease. They were all very nice and listened carefully to my experiences, but still I got the feeling, at least from some, that there's a good bit of discounting that happens when listening to patients with cancer. I think some of what I spoke about will change this. I mentioned, for example, that the one time I mentioned my very runny, crusty nose, I got the look--you all know the look I mean. And this despite the fact that the infamous runny nose is even listed as a side effect by the makers of herceptin.

One of the students suggested that my sister make a documentary concerning one of our primary issues: most of us educate ourselves about our diseases and when we have side effects they're real (for the most part) and we want to be listened to. I like my oncologist very much but I rarely mention my side effects any more. When I think it may be serious I do a lot of internet researching and always come here to get the final say. And if I think I need to see another doctor or get another test, I suggest what I want and trust he'll go along. Usually, he does.

Sorry for the rant!

P.S. I noticed in reading this over, that I wrote "scared" rather than "scarred." I decided to leave "scared" as perhaps it's a more apt description.

03-28-2007, 11:01 AM	#14
Grace Guest Posts: n/a	Thanks Susan and everyone else, Next time I'll be less lazy and do a search as the information on your previous post gave me the answers I needed to feel less threatened. I noticed another thread running through everyone's response: the "my medical team doesn't believe me" thread. That's the story of a lot of our lives, and one of the more annoying aspects of this disease. Although I can sympathize in part with our doctors, nurses, technicians, who hear so many complaints all day every day that they discount some of what we tell them, still I hate it and I some times wonder what the purpose is in seeing my oncologist every six weeks. Just another occasion to show my downsized, dimpled, scared, blue breast. I've gotten very good at feeling for lumps and bumps and will probably find them before he does. Of course, I then go home and start my internet searches tryng to find the answers for myself. I had an interesting day last Friday. My sister, who teaches a doctoral program in nursing, was teaching a class on medicine and technology and the use of the internet by medical consumers. Most of her students are nurse practitioners and at least half (six) are in oncology. Margaret asked me to talk to them about my experiences in using the internet to do research on my own disease. They were all very nice and listened carefully to my experiences, but still I got the feeling, at least from some, that there's a good bit of discounting that happens when listening to patients with cancer. I think some of what I spoke about will change this. I mentioned, for example, that the one time I mentioned my very runny, crusty nose, I got the look--you all know the look I mean. And this despite the fact that the infamous runny nose is even listed as a side effect by the makers of herceptin. One of the students suggested that my sister make a documentary concerning one of our primary issues: most of us educate ourselves about our diseases and when we have side effects they're real (for the most part) and we want to be listened to. I like my oncologist very much but I rarely mention my side effects any more. When I think it may be serious I do a lot of internet researching and always come here to get the final say. And if I think I need to see another doctor or get another test, I suggest what I want and trust he'll go along. Usually, he does. Sorry for the rant! P.S. I noticed in reading this over, that I wrote "scared" rather than "scarred." I decided to leave "scared" as perhaps it's a more apt description.