Thursday, July 1, 2010

Tamoxifen again

I found more information about Tamoxifen that makes me feel better about taking it.

The Clinical Journal of Oncology, in 2005, published findings from a study on which patients benefit the most from Tamoxifen. And as it turns out, I fit that profile.

The conclusion states: "Not all ER + pts [patients with tumors sensitive to estrogen] benefited equally from tamoxifen. The largest benefits of tamoxifen were observed with high quantitative ER and low RS [recurrence score/Oncotype dx score], while smaller benefits were observed with low quantitative ER and high RS."

There's a table that shows the information -

Women with LOW Oncotype scores (less than 18) have a 7.2% absolute risk reduction from Tamoxifen (at 10 years out).
Women with INTERMEDIATE Oncotype scores (18-30) have a 17.3% absolute risk reduction.
Women with HIGH scores (over 30) only have a 1.6% absolute risk reduction.

Since my Oncotype score is a 15, at the higher end of the "low risk" category (and called "intermediate" by the National Cancer Institute) and the tumor was also highly ER+ (10 on a scale of 6 to 12), this means that I'm in the group that is likely to benefit the most from Tamoxifen. I was surprised to learn this, because I had thought that since my Oncotype score put me at such "low risk," the Tamoxifen might not even be very important. But it turns out it's the opposite - it's the women who are at high risk for recurrence that don't benefit nearly as much from the Tamox; for them, chemo is what's more important/effective.

What also helped me was a great visit with my naturopath, A, two days ago. She asked about my Tamoxifen decision, and I told her that I'm taking it, but not really feeling good about that. I told her I don't feel like taking it OR not taking it is a "good" decision; that I'm equally scared of the consequences of taking it or not taking it.

A then said that she feels really good about me taking the Tamoxifen, which was such a relief. And I surprised myself by reacting with surprise - I blurted out, "Really??" when she told me that. And I hadn't thought about it consciously, but that made me realize I had subconsciously been wondering/thinking that maybe A, being my NATUROPATH, would be disappointed that I'd chosen to take the Tamoxifen but would continue to help me on my path in spite of that. It was great to learn that she doesn't just "tolerate" my Tamoxifen decision - she supports it. She was excitedly telling me about studies that show that patients taking Tamoxifen PLUS the supplements I'm taking (some of them, anyway!) do even better than patients taking just Tamoxifen. I was happy to know that her position is "Tamoxifen and [your supplements] work really well together!", not "If you're determined to take the Tamoxifen, these supplements can at least help you counteract the evilness of it." I'm feeling much more at peace about my decision now.

I love it that A is truly integrative. She's one of the few people not trying to get me to choose either conventional medicine or alternative medicine and shun the other, and I so appreciate that. She also told me that I'm in that "narrow window" of patients who tend to be most successful in overcoming cancer, in the sense that I am not too rigid in either direction - I'm neither a person who is so dogmatic about natural health that they won't even consider the conventional therapies, nor am I a person who goes on smoking and drinking and continuing a mainstream lifestyle despite evidence of its harms....I'm open, but with a healthy skepticism, which is the most helpful way to be. All of that was so great to hear. She did add, however, that while it's great that I can look at things from all angles and see all the possibilities, it's not helpful if I get too caught up in this and can't find inner peace with my decisions because of it, etc.

Sort of related to that, A thinks I need to relax a bit. :) One suggestion was to get off the computer for a bit, stop the endless researching "and reading books like this" (she said while gesturing to a stack of cancer books in her office), "and read a novel! Do you like novels?"

Oh dear. I hadn't told her about my current stack of books, but maybe she's psychic. Because she's right - I just finished reading "Brightsided: How the Relentless Promotion of Positive Thinking Has Undermined America," by Barbara Ehrenreich, and now I'm currently reading:

"Final Exam: A Surgeon's Reflections on Mortality," by Pauline Chen
"Living Downstream: An Ecologist Looks at Cancer and the Environment," by Sandra Steingraber
"Life Inc: How the World Became a Corporation and How to Take it Back," by Douglas Rushkoff
"The Vegetarian Myth: Food, Justice, and Sustainability," by Lierre Keith

So, yeah. Anyone have suggestions for relaxing novels I should be reading? ;)


  1. Omg, THAT is the kind of Naturopath i agree with wholeheartedly! THAT is what alternative medicine needs to be. Western medicine isn't evil, if it was do you think we'd have cured polio and smallpox and all that jazz?

    (ok so polio is still out there in developing nations, but you get my point) Western Medicine has done SO many massively amazing things for humanity! Antibiotics! Vaccines! Even the POTENTIAL to cure cancer- it's amazing!

    But- we can not discount the power of herbs, vitamins, good nutrition, acupuncture, massage, chiropractic, etc. They all have healing properties- they NEED TO BE INTEGRATED INTO "regular" medicine.

    For books- gah, i read the same crap! And i am not particularly into fiction- but some of my favorite lite reads (not science or feminism) are by Bill Bryson. Try "A Walk In the Woods," or "i'm a stranger here myself". He's a travel writer. I started with "a walk"- it's about his time trying to thru-hike the appalachian trail.

    Also, try "Tales of a Female Nomad" by Rita Golden Gelman. She gets a divorce and sets out to see the world alone- more travel writing, i love it.

  2. Yes! -- "Tales of a Female Nomad" -- I read that right after "Eat, Pray, Love," and it was sort of same general idea but a very different woman. "The Help" was really good, I couldn't put it down, and we can't keep it on the library shelf. "Little Bee," too, but there's an awful scene in the middle that's central to the story, worth it but just warning you. Hmmm ... I just finished Bill Bryson's "Down Under," and just started his "A Short History of Nearly Everything." And there's always great young adult/juv fic -- "Ida B: .. and Her Plans to Maximize Fun, Avoid Disaster, and (Possibly) Save the World" is one of the best I've read of that sort lately. Ida B is one spunky girl.
    Oh, oh, I know one you'll like! -- "The Physick Book of Deliverance Dane." And another: "The Lace Reader."
    Geez, can you tell I'm a librarian? ;-)
    Really glad to hear that A's so supportive of what you're doing ... that's greatly encouraging, along with this new info you found.


  3. Britta!!!

    I'm glad to hear that your naturopath is so awesome, and that you're feeling a bit better about taking tamoxifen. Also, way to go on deconstructing the medical reports (in your last post)!!

    As far as reading goes, are you a Tamora Pierce fan? She's written a lot of stuff (fantasy - ish) - definitely a way to take a break from heavy nonfiction! There's also a new book out about the history of yoga - I haven't read it yet but I just got it out of the library. I also love Terry Pratchett's "The Wee Free Men," "Hat Full of Sky," and "Wintersong."

    Miss you and sending you love and hugs!!!



  4. Hello,

    My name is David Keating and I am a student at the University of Arizona. I am working with Dr. Steve Rains, who is an Assistant Professor in the Department of Communication. We are conducting a study about blogging and health and would greatly appreciate it if you would complete our survey. We found your blog by conducting a general search for blogs about health. We would like to know more about your experience blogging.

    Our survey takes about 20 minutes to complete. To participate, you must be (a) 18 years of age or older and (b) have made a blog entry in the past 30 days.

    If you meet these requirements and would like to participate, please click the link below. The study will be conducted online and the link will take you to the first webpage of the survey.

    [Note: You may copy and paste the address directly into your web browser (i.e., Internet Explorer) to access the study.]

    If you have any questions or concerns about the study, you may contact Dr. Rains at:

    Thanks for your consideration!

    Best Regards,

    David Keating
    David Keating
    Department of Communication
    University of Arizona

  5. I appreciate what you wrote in your blog. I had stage 1 breast cancer with a lumpectomy and cancer did not go to lymph nodes (diagnosed and surgery in June of 2011). It is estrogen recepter positive and my oncotype DX score was 18. All my doctors have told me if I was to have breast cancer, my situation was the best case scenario. I have actually caused myself anxiety and panic attacks because of the decision to take tamoxifen after well-meaning people where giving me computer printouts of information on the horrors of tamoxifen. I have been fighting and butting heads with taking it. Your blog, though not all the way rids me of my anxiety, but makes me feel a little better about taking it. Thanks.


  6. Marsha,
    It's great to hear from you. I'm glad my blog is informative to you and helping calm your anxiety! I'm always so glad to hear that my story/my blog is helpful to other women who unfortunately have to be in a cancer journey of their own!

    I had panic attacks over Tamoxifen, too. There are indeed many horror stories about it on the Internet. The problem is that the many, many women who are taking Tamoxifen and NOT having problems with it are much less likely to post about that... I mean, who goes to a message board to say, "Hey everyone, Tamoxifen's working just fine for me!" :) When my oncologist told me that most women do NOT have big problems with Tamoxifen, I didn't believe her, and actually cried through most of that appointment. Oh dear.

    I've been taking Tamoxifen for almost 2 years now and it's not nearly as bad as I had feared. I do have the occasional "hot flash," but it's more like a "warm flush" (e.g. I get suddenly overheated, but it's not unbearable and I don't go running for ice cubes as I tear my clothes off :)), and my period has changed. Pre-Tamox, it would last 7 or 8 days and was quite heavy. Now, it does this weird thing where it's heavy for 2 or 3 days, then stops for a day or two, then is light for a day or two then done. One time, though, it lasted for 3 weeks, and there have been a couple months where I haven't gotten my period at all.

    Other than that, Tamoxifen's okay for me!! Are you taking it now, or will you be? I hope the side effects are mild for you, too!! And I do wish that there were more women writing on the Internet to say that Tamoxifen's not that bad, so we wouldn't all get so scared of it!

    Best of luck to you, Marsha, and thanks for visiting my blog!