Supporting women whose lives have been touched by breast cancer


by bl

It was with mixed feelings that I collected my prescription for tamoxifen. From shortly after diagnosis I had been told I would probably need tamoxifen or arimidex. I was a little concerned that one of the side effects of tamoxifen is gynaecological problems because I’d had those on and off since I was 18 and I had been advised not to take the contraceptive pill or HRT because of contra-indications. I was not sure about arimidex either. Although I knew it was given to post menopausal women like me, one of the side effects is that it affects joints and I had arthritic knees and hips since the menopause; osteoporosis may also be a side effect of arimidex, which concerned me.

When the multi disciplinary team met to discuss my case the oncologist decided that the risks of endocrine therapy did not outweigh the benefits and I was told I did not need to take them because my prognosis was so good. To say I was surprised was an understatement, especially in light of what I had read about invasive lobular cancer and the indications of having more than one tumour. The surgeon stressed that both tamoxifen and arimidex were still part of a trial and were considered ‘dirty’ tablets because of the side effects and they did not want to give me blood clots or a heart attack and re-iterated that the risk outweighed any benefit I might receive from the medication.

Perversely, over the next two weeks I worried that I was more at risk of the breast cancer returning as I had not been prescribed either, so was even more surprised at my next follow-up to be told that the surgeon had put all my details into the ‘adjuvant’ website and there was a clear indication for me to take tamoxifen. He had spoken to the oncologist and he was now in agreement. Slightly bamboozled by the turnaround I collected the prescription.

Reading the very long list of side effects is enough to daunt anyone, but I had been told by the surgeon and breast care nurse that side effects usually happen quite quickly and most people tolerate it well. If I did suffer any adverse effects I could soon stop taking it. I decided to take my tamoxifen in the evening, as one of the more common side effects listed was nausea. My rationale was that it would happen whilst I was asleep so, hopefully, I would not notice it plus the pharmacist had advised me not to take it at the same time as my thyroxine.

Exactly one week after starting it, I woke up in the night to nausea, stomach cramps, severely aching legs and a headache. I took some paracetemol, but that did not seem to help. By morning the cramps and nausea had gone, but the headache and aching legs remained and my mood was very low. I was very emotional all that day; I kept crying and I just could not get myself out of it no matter what I tried. By the following morning I felt a little better and after a good night’s sleep the only thing that remained were the aching legs. After 4 weeks my legs did not seem so bad and after 6 weeks I only had occasional aches. I assumed that my body had got used to the tamoxifen, but then read on the forum that different brands can have different effects. The second prescription had come in a different colour pack, but I had not given it a thought. When I checked with the chemist it turned out that the first prescription had been ‘Wockhardt’ and the second ‘APS’. Whether it was the different brand I do not know, but I have stuck with APS since and apart from the occasional aching legs do not seem to have any other side effects. I am now into my fourth month of tamoxifen. It is still early days and things may change, but I am quite optimistic that I will have no more problems.