TAMOXIFEN UPDATE: Everyone Take A Breath, Not More Pills

Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.

Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!

S-E-Q-U-E-S-T-R-A-T-I-O-N

No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.

San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.

I am here as a patient advocate sponsored by the Alamo Breast Cancer Foundation. We are a group of 31 advocates and we are a busy bunch. Yesterday, the day began at 6:15AM. Breakfast seminar. Then, presentations. Then, more presentations through lunch followed by an interview. (There will be a video posted on the ABCF website and IF I don’t look like a fool, I’ll be sure to share!) Then, a wrap up session on the official presentations and finally, a dinner seminar hosted by Novartis. The day ended at 10PM. Today will be the same. Ditto tomorrow.

This medical symposium is THE event for presentation of the latest in breast cancer research. Each paper gets presented in a 15 minute time slot. Perfect for a chemobrain! Not a chance of getting distracted. If I glance away from the screen for a second, they’ve already moved to the next slide. Yesterday, there was “Big News” expected. It was “The News” for this 35th Annual Symposium.

Most people already know but some may not. Study results were presented about tamoxifen. They seem to indicate there is a benefit to extending the length of time tamoxifen is taken. The study showed a benefit if the present five year regiment is extended to ten years. Scientifically, the data presented was “statistically significant” and this is where things get a bit dicey. Because there was statistical significance, within moments of the study presentation, the NY Times had a piece on their website and twitter was blowing up with this GROUNDBREAKING NEWS.

Hold ON. HOLD ON. Not So Fast! Have we learned nothing? Sound bites and headlines are just that…. they do not tell the story. And the sound bites reached a fever pitch by 7PM last night. This was approximately ten hours after the 15 minute presentation was delivered at the San Antonio Convention Center. I was in the room. Listening live. And then, I had an opportunity to discuss this with a doctor.

Hint: That interview I mentioned? As luck would have it, one of my assignments was to interview a doctor and among the things included in my interview was the “ATLAS” study about the tamoxifen. My debut in front of the camera as an interviewer and I got THE HOT STORY! That, folks, is what I believe the news people call “a scoop” and I got the scoop. And then, the room full of advocates got the same scoop from a panel of FOUR medical oncologists. This was a panel of brilliant doctors from all over the country.

I don’t have the ability (at this moment) to get into the nitty gritty but I will simply say this: “Significant” in the scope of a scientific finding is very different from significant as we know it in the real world. Then, let’s add the care we should always take when listening to anyone share statistics. Statistics can be very funny. Just how relevant is a particular statistic to YOUR given situation and this is the real take away from what happened yesterday.

While a benefit may have been seen in extending time on tamoxifen, does this mean it’s across the board? Of course not. Three women in one hundred might be spared a recurrence but at what cost? It may be an FDA safe drug but y’all (my new twang, it doesn’t take long….) can tell me how you feel about the medication. Tamoxifen is really not “well-tolerated” from most patients perspective.

The medical oncologists have made it clear that they have just seen the data for the first time and they haven’t had the chance to really analyze it, much less make decisions regarding how they will incorporate this information into a changing treatment paradigm. There was immediate and unanimous consensus. There is a small subset of patients for which they would discuss the benefits of additional treatment. The decision would be a collaboration between doctor and patient and it would include a discussion of whether the potential benefits outweigh the known risks.

So…… NO FREAKING out over any splashy headlines. The clinicians seem to be unsure how this is going to translate over to their patients and they were clear about their need to analyze the data before they make any suggestions or recommendations.

I’m not a doctor and I do not dispense advice or even suggest what is medically sound practice. The only medically sound advice I have? Sit down with your doctor. Ask questions. Understand how this study impacts your own set of circumstances. Remember, there is no cookie cutter answer. This cancer stuff is highly complex and the deeper we research, the more personalized our treatments will (and should) be…..

And WE must be a partner in our own care. Talk to your doctor. Frankly, I wasn’t impressed with the numbers but I’m not a scientist or a clinician. I’m just a woman trying to look at something as emotionally detached as possible. Not so easy with this cancer stuff, but still…. logic and evidence based science should be the steering factors. Not emotions. Not splashy headlines. Not scare tactics.

Evidence based science. And a good discussion with your doctor. At your next scheduled appointment. I’m not cueing up the confetti on this one. At least not yet and definitely not for a long time, IF EVER….. Just sayin’ …. OK? O-KAY!

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10 Comments (+add yours?)

  1. Catherine ~ Facing Cancer Together
    Dec 06, 2012 @ 12:35:14

    That’s for sharing AnneMarie’s post, Lori. 🙂

    Reply

  2. elynjacobs
    Dec 06, 2012 @ 13:52:59

    Agreed, Agreed…..The last thing we need is women blindly agreeing to ten years of %#*!. Tamoxifen is not well tolerated and this is only one study with limited means. Please, do your research and consider natural means before agreeing to take any drug…five or so years ago, I went to seven docs, asked them if I should take it…they all said yes. I did, but then I did more homework and dropped it. It may be right for some, but not for all.

    Reply

    • Lori
      Dec 06, 2012 @ 15:02:21

      Thanks for commenting, Elyn. I certainly agree none of us should take anything blindly!! I can’t agree, however, that Tamoxifen is “not well tolerated” since that, like all things breast cancer, is patient specific.

      Reply

  3. Susan
    Dec 06, 2012 @ 14:36:32

    Lori and AnneMarie there were about 15 news stories about ATLAS and tamoxifen when I went to put my newspaper articles together for my breast cancer articles newspaper (http://www.scoop.it/t/breast-cancer-news), and I was amazed at how skewed they were. As a patient who just finished five years with awful side effects from that drug, the last thing I wanted to read about was the ATLAS study. Luckily, as you wrote in this fantastic post, medical journals and the great panel of medical oncologists with Alamo at SABCS were not so fast to say this would become the new treatment regimen as a result. I am so glad you wrote this to show people they have to look deeper at the data, and what exactly the trial entailed and base their conclusions from that as well as professional medical oncologists interpretations and opinions. Thank you! -Susan

    Reply

    • Lori
      Dec 06, 2012 @ 15:09:52

      Adding to AnneMarie’s comments, the docs on the ABCF panel mentioned just one area where they could see these findings change their clinical practice. That was in young, pre-menopausal women with significant node involvement who were looking for more therapy.

      Reply

  4. Cancer Curmudgeon
    Dec 06, 2012 @ 17:02:17

    I learned of this from a friend who is on Tamoxifan, and the article I read from a UK news source stated that the study was funded by AstraZeneca, the maker of Tamoxifan. For me, this immediately calls into question the results.
    My 2 favorite things about this post: 1) Stats can be funny and 2) the absurdity of “groundbreaking news”

    Reply

  5. Cancer Curmudgeon
    Dec 06, 2012 @ 17:07:01

    Reblogged this on anotheronewiththecancer.

    Reply

  6. Marcia Almeida
    Dec 06, 2012 @ 19:51:26

    I had an allergic reaction to Tamoxifan two years in and developed ITP (blood desease). I stopped all medication and will be five years 5/1/13.

    Reply

  7. BreastCancerSisterhood.com
    Dec 06, 2012 @ 21:07:14

    I’m glad Lori that you and AnneMarie are getting to experience the SABCS. It’s in my backyard, but this is the first time in four years I’m not there. Since it is “the” most prestigious gathering of breast cancer researchers and oncologists, everyone saves their news to present here. Can’t wait to meet you & AnneMarie, tomorrow afternoon, and hear what you’ve learned. I will call you in the morning.

    XOXOXO,
    Brenda

    Reply

  8. Cancer Curmudgeon
    Dec 07, 2012 @ 09:55:51

    I have nominated you for the Very Inspirational Blog Award. Check it out here: http://anotheronewiththecancer.wordpress.com/2012/12/07/inspirational-blog-nomination-2/

    Reply

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