I travelled up to Western General today with a couple other cancer patients. The lady had breast cancer also and got me a tad confused about herceptin. My cancer is ER Negative, Node Positive, Grade 3. Tumour 7cm and 15 cancerous nodes out of 23.
She was asking what treatments I was getting and when i mentioned herceptin she said that she was told she was Herceptin positive like me but that altho they say that not everyone really is. They just say that to begin with and find out later?
Is this the case? My ONC told me I WAS Herceptin positive. So why say that if your not. She said at the time that this was a very encouraging aspect of the treatment as its a very good drug.
So now I dont get it but then I think I am entirely clueless on just about everything no matter how many times its explained!
Does anyone else feel its a minefield of terms etc… i was reading a post earlier about vascular invasion which i dont understand. I wrote down everything from my meet but didnt seem to get any detail like that. I had my scans and it hadnt spread anywhere else in the body at that time.
Arghhhhhhhhhhh just when i think i understand something else crops up!
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Hi Lucy, thanks i actually just read up on the Cancer Research site about diagnosis and treatments etc and understand now what its meaning. I feel happy that i understood correctly what i was told.
I also did the formula again hoping i might fall into the lower scorings but unfortunately in the ‘less likely to be curable’ category.
I know all this but i keep getting thrown by things i read on here or things folk say to me. I think there is always a wee glimmer of hope thinking i might be in better postion but i know the facts and am not going to read up any more on it or ask questinos cos it just winds me up!!!
Lyn-perhaps you’re trying to take on too much information at once? Googling and asking questions can be really helpful-but as you’re finding out, everyone’s situation is so unique, that comparing diagnosis/treatment-and heaven forbid (if you’ve ever asked), prognosis, can be counter productive. Maybe try to take a step at a time-move forward with your treatment, and review the situation when you complete it? Your medical team willl have your best interests at heart-and what applies to other patients may be vastly different than what applies to you. Good luck with it all-eventually some of it will make sense-but don’t forget-cancer very rarely plays fair, or follows any rules. It’s a sneaky and devious beast!
I did have doubts about joining a forum for those very reasons. I also said from outset i wouldnt google but i bloomin kept doing it.
Its not that anyone is doing or saying anything wrong its just that we are all unique and i think knowing how poor my prog is i dont like hearing stuff involving treatment i am due to get ie that it might not be effective cos then i think i am even worse off!!!
Unfortunately the lady i am travelling with is very vocal so i will just have to take my IPOD tomorrow lol!!! xxx