Sunday, 24 July 2011


The surgeon was off sick last Thursday when we turned up so the drain had to stay in - in terms of the day that was the best thing that happened.

We saw the oncologist and my god that was a waste of petrol.  We turned up and she spent 5 of our 15 minutes looking and feeling the scar, another 5 telling me what I already knew - ie triple negative, 1/15 nodes bla bla bla.  She did say the bone scan was fine - which was good. She then asked what kind of other medication we were having and we started on the list, but she only wrote down a couple of them as she wasn't paying attention.  Then we started getting challenging for her I think.  She said "you will be having chemo called FEC-T" (not you can choose to have chemo) and proceeded to tell us how frequently and what the side effects were.  One of the things she said as she was going through her list was 'cardiotoxicity' and when I interrupted to ask what this meant she replied that it was just that 2-4% of people may have a heart attack as a side effect - this is for a drug that may give you a 2-4% increse in overall survival.  Hmmm, seems a bit like 'if it doesnn't kill you first it might make you live a longer' - not reassuring.   She also said it might affect my fertility and cause ammenorhea, but that was the fertility people's job to talk about as she isn't a fertility expert.  Fair enough, except there is a big difference between your periods just temporarily stopping, and having an early menopause.  Hmmm, not really warming up to her yet.

When I told her I wanted to know how each of the drugs worked, what they did and why them and not others she replied (and i quote) "I don't have time to tell you that, I have other patients and a plane to catch".  This is where I started to think things were not going well.

She told me that the FEC protocol was used because it showed a little better statistics and the Taxotere was used because it was funded.  That's all I got.

When I asked her whether she would still recommend them if money wasn't a problem she replied that "if you had a million dollars and went to the States you would have exactly the same ones".  Now I know she's full of shit.

I told her that I was not going to have a drug that if I didn't what is was doing and she repeated that she just didn't have time, but the nurse will give me a handout (which was nothing except the FEC protocol, which she had just explained to me).  She said I needed a port but didn't elaborate (if I didn't already know what it was I wouldn't have had nay idea what was going on then). 

I asked her what she thought about IV vitamin C.  She decided I was having it to increase my immunity and that all it would do was protect the cancer cells.  We decided not to pursue this as she was clearly trying to shut it down without offering anything useful in the way of intelligent information.

We mentioned GnRH in terms of trying to provide some protection to my ovaries, and she seemed quite positive about this.  Interesting considering it is still not yet proven to work to the point that it is implemented as standard practice and research is still ongoing, but she's happy to 'approve' of GnRH and not Vit C.  How is it any different fron the Vitamin C, that actually has far more research to back it up?  Hmmm.

Then I lost all respect for her.  I asked her about CTC tests.  She had no idea.  She started to say that if the test could show what drugs the cancer would be susceptible to then it could possibly be useful, and when we replied that that's exactly what it did she tried to fob it off.  She then tried to suggest that there was no research to back it and there needed to be research to say that using CTC tests could improve outcomes.  When we replied that this is exactly what there was and we had bought that research with us she did her best to ignore it.  I then asked her if I did the CTC test and it showed that a differetn drug was ore uselful on my type of cells would she prescribe it, she outright said no.  Then looked gobsmacked when I told her that if the test came back saying the cells were not sensitive to one of the ones she had recommended, then I wouldn't have it.  There was no offering of discussion re this or more room for information. 

She hustled us out the door to get an appointment in 3 weeks to get the wound looked at again, and start the chemo.  We were given standard hospital handouts including one on a port but no info about how or when this would happen - maybe she thinks I can put it in myself?  And were told we woiuld get an appointment in 3 weeks, but it would probably be a different oncologist as they all come from Auckland.

I am furious, and disappointed, and pissed off, and have not reall gained much at all from going. She didn't even tell us why she though we should have chemo or how much of it we might get.  There was no room for informed choice at all, and there was certainly no suggestion of gaining consent.  I am thinking I might make a complaint to Health and Disability.  If it was someone who had even the tiniest bit less gumption they would be slung along in the dark pumping their bodies full of poison that they know nothing about.  It makes me sick when my job is centred around supporting people to make choices that are right for them - no matter whether I believe they are right or not, and continuity of care.  I am so angry.


  1. OMG how rude and un-professional of her. So much for bedside manner. I would of wanted to slap her. I would actually complain about her. The " I have other patients and a plane to catch " and this is MY LIFE we are talking about the patients can wait, get another plane I HAVE ONLY GOT ONE LIFE !!! I cannot believe these sorts of people work in such a sensitive field when they seem to have no understanding of what it is like to be on the other side of the fence...

    Hang in there fingers crossed you do not encounter anyone else like this .


  2. Crikey - you should def complain. Can you see a private oncologist? Do you have health insurance? I suspect someone who is paid for their time would actually listing to you more.

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