It was August 1999 when I finished my five year course of tamoxifen. There were a few tablets left in the box so I smashed them up with relish much to my kids alarm. That's me reclaiming my life I thought. So in 2011 when it was offered to me again ,after a diagnosis again of early stage disease, I declined...politely.
It may seem a paradox as perhaps one if the reasons I'm still here so many years later is because of tamoxifen. But also having taken it for 5 years I know the side effects. I gained weight, I felt overwhelming fatigue at times , I burned up when I least expected it, I felt flattened by it. I even had to have an ovary removed because of an ovarian cyst, another increased risk with tamoxifen. But I also knew the benefits of taking it having researched it thoroughly and what mattered to me was to be there to see my children grow up. So I dutifully took it for five years.
Last year when more research was published saying that there may be benefits in prolonged courses I revisited my recent decision with my surgeon. Perhaps I'm being reckless with my life, I said. I also explained I had made the decision to work independently, setting up on my own. Could I do this while also taking a drug that I knew would cause such ill effects? We discussed it at length. He told me that there may be more known in time about whether reduced doses could have as beneficial effects, also about regimes that are different for example where you have a month off to kick start the effects of the drug as we know sometimes it stops being effective. He told me I could change my mind at any stage and would still benefit from it. I left reassured that I had made the right decision for me at this time. That what matters to me just now is that I have quality of life.
So it won't surprise you to hear that the recent research published saying that around 400 more lives a year are lost as a result of people not taking the full course of tamoxifen has made me revisit it.
But I haven't changed my mind. You see it's my choice and I have made it from a position of knowledge. My thoughts are with the many women who having heard the news feel guilty or fearful. Perhaps unlike me they haven't made an informed decision, they stopped taking tamoxifen because of side-effects that went unreported. They hadn't fully understood the risk they were taking and no one had asked them how they were getting on. Perhaps they were embarrassed to admit the side effects or had not had them taken seriously. I do know that not once in the five years I took the drug was I ever asked about how I was doing on it at my review.
Was I surprised by the research? No. Was I dismayed by the tone of the statements. Yes. They came from a medical centred perspective, not a person centred one. The implication almost that no one has the right to make a decision to stop a drug for cancer. The dutiful patient adheres to their treatment whatever it's impact.
So here are some thoughts from me for professionals on how to do this differently:
Discuss the benefits and potential side effects with the women or men before prescribing and ask what matters most to them to enable an informed, person centred decision.
At follow up ask how they are and what would help and enable that to happen.
Be flexible and listen to what they say.
Support people to make the decision that's right for them.
Remember quality of life should not be totally sacrificed for quantity of life and that ultimately it's the individuals decision to make that informed choice. It's the role of the team involved to enable that.
And for the researchers, let's redouble efforts to create therapies that improve both quality and quality of life. We are in uncharted waters where people are surviving cancers for much longer and so future treatments need to enable that survival from a well-being perspective too.
And for the people diagnosed with breast cancer and on tamoxifen do ask for help if you are struggling and need to control some side effects. Don't be afraid to ask questions and get the information you need to make informed decisions.
Reasons to be grateful.
Believe me when I say I am so grateful to still be here so many years after my first diagnosis and give thanks daily to all those who made that possible. But please don't judge me if I decide to do things a differently now. I may of course need to review that decision and some may have reason to question my decision in the future. But at least you will know it was my choice, made with knowledge and that's a good outcome too.