Perspectives on treatment pathways – Debbra

 

Debbra describes moments where she had to fight for care based on her own decisions.

Transcript

Okay HER2 *(Human Epidermal Growth Factor Receptor-2) is an elevated protein that usually means that the cancer is a little bit more aggressive and there’s a drug called Herceptin and now there’s a whole bunch of other drugs that are available for HER2-positive patients. So I pushed because I was 0.02 off of being considered HER2-positive and so again, I had to push because again you need to know about the sensitivity of how these tests are done and it wasn’t a hard stretch to say “What harm will it do to give a very healthy woman like Herceptin or a HER2 agent?” And so, then I pushed to have HER2 Herceptin, for my HER2 and did that for 18 sessions which took about a year and 3 months and then again with HER2 or Herceptin, I should say and a lot of the agents that are used when you’re HER2-positive they can cause cardiovascular issues.

And that was the other thing is that, there’s two different tests that you can have to test your heart functions. One’s a MUGA* (Multi Gated Acquisition Scan) and it’s used with radioisotopes and the other one is just an imaging like an ultrasound. They had done a MUGA which is the one with the…They inject dye into you and that one had said one number and then the other procedure a little later on had shown that my heart function had dropped. And so the heart function they say is or they utilize the term ejection fraction and if you drop more than 20% on your ejection fraction you need basically, to stop the drug. But again my oncologist wanted to take me completely off of it and not restart me and I had only had 5-6 treatments. In everything I had read if you can get the full treatment it’s better for you. Again I had to go back to the Internet. I actually had to pull the Herceptin guidelines, Canadian Herceptin Guidelines and show them to her which is if you have somebody whose heart function drops then you have to stop them for 6 weeks and then reinitiate them. That’s the protocol. If I wouldn’t have pushed for that I wouldn’t have had the full dose of Herceptin. Would it have made a difference now that I’m metastatic, I don’t know but the fact is that we know that it could have made a lot, I mean I think, I personally believe it would have been a lot worse if I didn’t get the full dose. But again having the knowledge and not being afraid to stand up for what you want and that’s basically what I did is I went toe-to-toe to the Head Oncologist when I went in for Herceptin and he was going to deny it for me and so I, again, it was a fight but was it a valid fight, yes. 

So again I think huge learnings for healthcare people. It’s all about cost but I think it’s something that needs to be pushed. I think as a patient you need to be aware of some of these options that you can track and not to be so trusting in everything that they say. I don’t mean to be sceptical or cynical it’s just that they’re people who put their pants on one leg at a time and they can make mistakes too and you’re the only person who’s going to look after you. I find here in the province we don’t have many options. We can’t really go to another cancer agency, we have one, so sometimes you need to fight the system more than you need to do anything else.

* HER2:  A gene present in cells that, in some breast cancer cases has a mutation. This mutation causes the HER2 gene to be overproduced in breast cells, causing the cells to divide uncontrollably.

* MUGA scan: Scan that creates video imagery of the hearts ventricles to check for abnormalities and to ensure that they are pumping blood properly.

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