I am 31 year old woman recently diagnosed with stage 1 breast cancer. After dealing with the shock of this news I have been going through the motions at the hospital. I am scheduled for lumpectomy and radiation in the months to come (chemo to be decided on at a later stage).
For the large part I feel I have been diagnosed with cancer before my time, with much of the research, guidelines and books geared toward older women in their 40s. After doing a lot of reading on the various medical steps and treatments it seems strange that the thing that continues to bother me is the use of Tamoxifen for 5 years. This is because given the enormity of surgery and radiation, the use of Tamoxifen involves taking the same pill each day.
My worries stem from personal accounts on the internet. It is scattered with horror stories of using this drug as the side effects seem utterly unbearable. It also seems many women choose not to take this drug because of the side effects despite its benefits. Given the nature of the discussion on websites and forums, it is not clear how many people do not experience adverse side effects. It is also unclear or how exactly the drug affects younger women.
I would like to ask whether there are any younger women out there who are willing to share their experiences of using the drug for 5 years? How did it affect you and your life? How were you able to manage your side effects (if any) to lead a normal life. Do you ever regret taking the drug?
I understand Tamoxifen affects people differently, but should you have any thoughts or opinions based on your experiences I would be most grateful to hear them.
Reading experiences can be scary, but understandably, those with problems will post about it, whereas others who are managing ok will not tend to, so there is a reporting bias.
I was peri-menopausal at diagnosis, so obviously my experience is not comparable, however, side effects have not been a problem & I feel fine.
Hopefully some of the others will be along to share their experiences, but maybe just see how you go & deal with any issues if they arise.
I am a bit older. Diagnosed at 37 April 2007) had chemo, mastectomy, Rads, hysterectomy and overies removed and finally 5 weeks ago preventative mastectomy on other side and Diep reconstruction on both sides.
I was originally put on Tamoxafen and was on this relatively symptom free for a year. I did have some hot flushes but not loads. I was put on an antidepressant and this helped with the few hot flushes that I hardly noticed them.
Then I had my overies out and because I was now post menopause I switched and started taking Anastrozole and omg it was not pleasant my hip started hurting and I was stiff all over it was getting worse so after six months my oncologist said she was putting me back on tamoxafen.
So it hasn’t been 5 years but I can say it’s tolerable and actually better than other options.
I wish you well and hope you are one of the lucky ones who do not overly suffer when you start taking it. Xx
I’m 39 and have been taking tomoxafen for just over 3 years. 0 side effects. Reading all the info it’s overwhelming and pretty negative that’s for sure.
I’m actually Wanting to go off asap to start a family and I’m struggling with not taking it until I conceive. I will definitely go back on it after I have a baby.