How I Learned to Stop Worrying and Love Tamoxifen

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Most of you already know Randi from her many contributions to the LBBC blog.  Today, Randi gives her take on tamoxifen, currently used for the treatment of both early and advanced ER+ (estrogen receptor positive) breast cancer in pre- and post-menopausal women. In December, 2012 The Lancet, one of the world’s leading general medical journals in Oncology, Neurology and Infectious Diseases published a report suggesting for women with ER-positive disease, continuing tamoxifen use to 10 years rather than stopping at 5 years produces a further reduction in recurrence and mortality, particularly after year 10¹. In her latest post, the first of a two-part series, Randi shares with LBBC readers her experience and thoughts on these latest findings.

I’m still not a full-fledged Tamoxi-Babe.

There.  I admit it.

But after reading lots of information released since The Lancet published a study showing the probability that tamoxifen treatment for 10 years instead of 5 decreases both the rates of mortality and chance of recurrence in women with breast cancer, I may find myself stuck as a passenger on Train Tamoxifen for a few more years.

Pass the happy pills (we’ll get to that in a minute).

I say “stuck” because I was hoping that train was coming to the station.  I was first given tamoxifen after I completed my treatment plan for breast cancer, which was ER-positive (lumpectomy, chemotherapy and radiation).  I honestly can’t recall the physical side-effects because this little thing called chemo-brain got the best of me (we’ll talk about that some other….what was I saying?) Anyway, after the first few months of tamoxifen treatment, the unexpected happened.

“Seriously?  Did you just say I have a mass growing on my left ovary, which is going to result in the need for me to have complicated surgery? Because believe me, that wasn’t in my cancer plan.”

Seriously.

My body betrays me again.  And then, a little voice in my head started asking if the tamoxifen could have been the reason for my gynecological “problem.” And before you say, “But Randi, studies indicate there’s maybe only a small chance of that happening,” I get it.  I really do, so thank you.  But, “small” ain’t “zero” and I already proved my ability to beat the odds by being diagnosed with breast cancer in my 40s so I know all about odds and how somebody needs to be in the “small” group in order for there to even be a “small” group and deal with the fact that it’s sometimes better to be a zero.

I digress.

As I recuperated from the big hysterectomy bag of a nightmare, my oncologist put me on an aromatase inhibitor, the results of which for me were some messed up side effects. Joint pain 24/7 bad enough to feel like I was going through chemo all over again. I couldn’t get out of bed without being in pain. I feared my days were numbered when I had difficulty just lifting my legs over my bed or unfolding my fingers one-by-one. I felt arthritic and old. Did I mention I was also cranky and belligerent? Like that crusty ancient neighbor we all had in the old neighborhood whose house we ran past because word on the street was she’d try to fatten you up with the gingerbread cookies she used as shingles on the roof of her house.  On the outside, I didn’t look a day over 40, but I felt like a 90 year-old on the inside.

After months of complaints and many aromatase inhibitors later, I came full circle back to tamoxifen. Ironic.  Even worse, it was Alanis Morissette irony better known as the “isn’t it ironic that the things I sing about in this song called “Ironic” aren’t actually ironic but really are just bad luck” kind of ironic. And that little voice was in my head again and it was asking if I was putting back inside of me the very thing that had got me to where I was in the second place. I wondered again if it caused me to lose my female reproductive parts. I even begged my oncologist to use me for a study regarding gynecological masses after taking tamoxifen.

“Not enough data.”

Again. Seriously?

I am the data!

And now The Lancet study, those aforementioned happy pills and a ticket to ride Train Tamoxifen.

I can tell you right now that I’m willing to bet my…

Wait. I was going to say eye teeth but on second thought I’m not voluntarily going to give up another piece of me. Let’s start again.

Randi’s story concludes next week with part two of The Seven Year Itch or How I Learned to Stop Worrying and Love Tamoxifen.

For January’s Ask the Expert , Living Beyond Breast Cancer’s monthly online Q&A forum, Adam Brufsky, MD, PhD, answered questions about ATLAS, a major new study that has shown that tamoxifen treatment for estrogen receptor-positive breast cancer is even more beneficial when taken for 10 years instead of five. These questions were submitted during our January 9, 2013 webinar on News From the San Antonio Breast Cancer Symposium.

¹Long-term effects of continuing adjuvant tamoxifen to 10 years versus stopping at 5 years after diagnosis of estrogen-receptor-positive breast cancer: ATLAS, a randomized trial.  Published online December 5, 2012 in the Lancet, First author:  Christina Davies, MBChB, University of Oxford, United Kingdom.

8 thoughts on “How I Learned to Stop Worrying and Love Tamoxifen

  1. Pingback: Gingerbread Cookies

  2. I’m on tamoxifen & have now developed a complex mass on my left ovary. They want to do surgery. My employers (physicians, no less) have commented they’ve been more than generous with time off for my medical needs (lumpectomy, radiation, chemo + many appointments) and I am terrified to tell them. Last July, “attendance” was brought up on my review – and I had over 40 hours vacation pay still on the books…it was their perception of how much time I lost with treatment. I hate tamoxifen & have no idea what I’m going to do. Wish I could learn to love it.

  3. EVERYTIME I HEAR YOUR NAME AND READ YOUR BLOG, I THINK TO MYSELF OF A EAGLE’S SONG, TAKE IT TO THE LIMIT” and AFTER, THE LEAD SINGER GIVES KUDO’S TO THE BAND’S SINGER/ DRUMMER saying “VERY GOOD RANDY” then ” RANDY MEISNER, EVERYBODY.” IT WAS PROBABLY THE ONLY SOLO PERFORMANCE HE EVER GAVE with THE EAGLES. ENOUGH SAID. I HAVEN’T POSTED ANYTHING IN A LONG TIME, I HAVE THANKED BEFORE and I WANT TO THANK YOU, AGAIN. WHEN YOU DON’T KNOW WHAT TO SAY? ABOUT CANCER OF A LOVED ONE.

  4. To Ms. JEAN SACHS or Ms. Randi Rendle: I want to know that you had mentioned Teleconference’s on Metastatic Breast Cancer: Emotional Impact W/ Wendy G. Lichtenthal, PhD., Where do these Teleconferences take place and Why can’t This information be found on T.V.?
    Sincerely, All of my Love, Jimmy Lanzetta

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