Hi, that sort of pain, ongoing, can be really tiring and frustrating, and leave you feeling that life is hardly worth living. I am sorry it is so bad for you.
But I am also curious to know what action you would like to see TGA taking in response to hearing about the side effects you are getting from the drug that reduces your chances of dying within the next 5 years by about 30%?
I am asking this because I think you have raised a really important subject. Surgery, chemo, radiotherapy, hormone treatments and even targetted treatment do have side effects that can vary from critically life-threatening to slightly affecting quality of life.The life of a cancer patient in treatment can be pretty horrible. We are told we should report all symptoms to our surgeons and oncologists.
But I'm interested to know what you think we want them to do in response.
I ask this because I suspect there is a communication breakdown at this point. I get the impression that they think they know why we tell them this stuff and what we expect them to do/would like them to do about it. But they are wrong. And we think they understand what we want from them. But they don't. understand at all .
Do we want them to make the discomfort go away by cutting our dose or switching us to a less-effective drug with less side effects, even if it means we may double our chances of dying within 5 years? Or to tell us how to manage the symptoms better and whether we are contributing to the problem somehow?, Or just for them to understand the importance of developing new drugs for the people who will get cancer in 5 to ten years time that do not have these side effects? Or to offer some sympathy, and acknowledge how hard it is and discuss what impact the physical and mental and emotional symptoms have and to refer us to people who can help us with them, eg psychologists? Or is it just that we want them to be fully informed so they know what is happening, and we trust they will then advise us on what to do differently if that would be wise, and to encourage us to continue and to grin and bear it if that would be wise?
I was a little shocked to hear that a lot of oncologists reduce patient's chemo dose when a patient describes their treatment as distressing, unbearable, upsetting, very painful, and otherwise damaging their quality of life. They do so despite the fact that if it drops too low it will not be effective at stopping the cancer spreading/recurring. They do it because they think this is what the patients want, that patients complain about their symptoms because they want the oncologist to reduce the dose and make the symptoms go away. My oncologist says "I could reduce your dose, but that means we are only holding the cancer back, slowing it down. Is that what you want me to do? It could reduce your life expectancy a lot. " But she does think this is what they want until she explains the tradeoff.
Maybe she is right, and this is what some or even most breast cancer patients who complain about their side effects are hoping for. I know it is not what I want. But I am just one person.
I would really love to hear what YOU want your oncologist or surgeon to do when you tell them about troublesome side effects you are experiencing and let them know how horrible it is for you. .
I
