It has been a real struggle adjusting to the new medication that is supposed to be a part of my life for five years...tamoxifen. Tamoxifen is a hormone blocker. Since my breast cancer was fueled by hormones, taking this drug for five years is the next step in my cancer therapy. It is the basic protocol for my type of cancer---the most common, most easily treatable breast cancer. I have been struggling because, unless you have already gone through menopause, or have had issues with hormones, you probably don't know how important hormones are to stabilize your mood, your body temperature, keep your memory, energy levels, and regulate hunger.
I made it to six months on tamoxifen, and after having severe leg cramps, foggy brain, and fatigue like my body was trapped in an invisible suit of lead---I just needed a break. I have been in my little cave for the past 2 months or so because the fatigue was just so hard to battle. I didn't feel sick like when I was doing chemo--but I felt actually worse than that some days because it was just hard to move and drive. Driving takes so much concentration. You may not notice it if you are a healthy person just driving around. But it was so exhausting. Fatigue is debilitating in so many ways and it could be isolating.
So----against my doctors' advice, I just stopped the tamoxifen about 5 weeks ago. It took about four weeks to feel right again, and this week was the first week (since last monday) that I felt more like myself than I have in almost 2 years---since this whole mess started. The end of July of 2010, i finished radiation, after 4 rounds of chemo and before that 2 surgeries and 2 biopsies. So, this year was a year of just convalescing and getting better. But then the tamoxifen derailed me.I wasn't expecting that tiny pill to make such havoc in my life. It was so severe that I was really unsure of what exactly was making me feel so terrible. Now, I know I will have to begin taking it again. I am taking a couple of months off, just to feel better---but I know, every day that passes, I am taking great risks by not taking it. And every day that passes that I feel well, makes it even harder to think about taking it again. What a conundrum.
"Every time I try to get out---they pull me back in!" A friend of mine says that she knows someone that took the tamoxifen for the five years required, and when she stopped it was like "the clouds lifted" from her life. Do you take a drug to ward off cancer by 15-20%, even though you will live in a haze for five years? Or do you take the risk, and try to live the best life you can now and take your chances? Not easy to decide.
I guess I am just so tired of feeling sick and feeling fatigue. Just as I start to get my spark back, I have to take this new drug--and there really are no alternative drugs for someone my age. I still wonder what triggered my cancer. Could it have been my stressful childhood? (some believe stress elevates hormones especially during teen years) Could it have been my environment? Or I just have bad DNA? Some people think that if you live a better life with low stress and change your diet, you can have the same affects of lowering your risk of recurrence as with a drug. But some cancers are not hormone driven--mine was. We know that for sure. We also know that tamoxifen is proven to work at lowering recurrence. So it should be easy to take it, right? Maybe I just need some time....some time to feel all that happened fade from my memory a little. It seems to me my immediate present is more valuable to me than my far away, risky future. What to do?
Peg, do you know your bsolute risk of recurrence, with and without the tamoxifen? Maybe it's 10% if you take tamoxifen, 16% if you don't (I'm making this up); you need to decide if that extra 6% of benefit is worth how it makes you feel every day.
You don't HAVE to take tamoxifen; it's your body, and your decision. Of course everyone will try to talk you into it - it's the doctors' job to lower your risk of recurrence as much as possible. In my experience, most oncologists downplay side effects, insisting you should be willing to live with whatever these drugs bring, so long as you lower your recurrence risk. But who says they're right?
There are no Cancer Police here; we're all free to play the game however we like, so long as we understand our chances... So take a good, hard look at your ABSOLUTE (not relative) risks of recurrence, with tamoxifen, and without. And YOU decide if 5 years of misery is worth X% of gain.
You know what they say - "cancer ain't for sissies." We do the best we can with these decisions, and move forward. Take care- PJH
ok PJ, I am going to try my best to make the best decision I can and "no looking back", just like you say. I feel so much better, daily, and am trying to make the most of my days.
thanks PJ =)