Ah Statistics! Tamoxifen Update #3

Evening of a day filled with sun and rain.
Evening after a day filled with sun and rain at the mouth of the Columbia.

As I continue to question and research Tamoxifen I see that there is no way of applying statistics to the individual, just the possibility of having a generality. Statistics are like a squall passing through, who knows where the rain will fall? Or who will be at the right angle for a rainbow?  There are always those who benefit, and those who don’t. The individual is binary, the statistics are a vast expanse of grey.

I keep thinking about how many of the unquestioningly good things are unmeasurable.  There is no way to quantify the benefit of the walks I take in such a vast beautiful place – the river reflecting the sky, birds living their lives, or the rare treat of a river otter showing itself, often with one of my sons or my sweet husband beside me. Because it is not measurable does not mean it has no effect.

When I try to find out more information about Tamoxifen I find nothing but trouble with how statistics are presented. For instance headlines broadcast in 2012 declared that taking Tamoxifen for ten years vs five years “Improves outcomes by an additional 50%!” But that 50% is a relative improvement – actual risk reduction was only 2.8%.  When my oncologist talked to me about my risks for adverse reactions, like blood clots, he used absolute statistics, when he talked to me of the benefits of taking Tamoxifen, relative percentages were used.  I think this was not so much to trick me, as to reassure me- the toggleing between absolute and relative is happening all the time. There is a big difference between doctors and statisticians.  This confusion is sort of like using a metric ruler to measure the results for high jump in centimeters for one team, while  measuring the other team using imperial feet.

“It is always best to translate relative risk into absolute terms so you can actually understand the big picture. Over the 15 years of the study, those taking tamoxifen for five years had a 15 percent chance of dying from breast cancer. Those who took tamoxifen for a decade had a 12.2 percent chance of dying from this disease. That’s significant (an absolute risk reduction of dying of 2.8%) but doesn’t sound as impressive as a 50% increase.”  
            The People’s Pharmacy

My Tamoxifen holiday ended June 1st.  Now 6 weeks in I have noticed a return of hot flashes, persistent low grade migraines in June, word retrieval issues, have woken in the night with a charlie horse in my leg more than once, fuzzy thinking, and ringing in my ears.  When I went to the eye doctor last week he confirmed that Yup I have dry eyes too. Which is a known ocular side effect of Tamoxifen. I mention all of these things not to garner sympathy, but rather to document what not only myself, but many other women are experiencing. To validate what are often subtle things, that also happen to be cumulative.

Speaking strictly on the life quality basis, Tamoxifen does not enhance things for me. Which I can say with confidence now that I am half way through my five year tour into Tamoxifen land and after taking breaks from it to gage things. Even on the 10mg dose, it is clearly impacting my body. Hopefully with a recurrence protective effect as well as with the many minions of irritating side effects. My little study of one will continue the 10mg dose through the summer, and check in at my next visit to oncology world in September when I go in for a breast MRI, a blood draw and to meet with my doctor.   It is unclear at this point if the impact of all the side effects can outweigh the potential “2.8% advantage” in my decision to extend my dose to 10 years.

Then there is the Swedish study that came out in May during my holiday. In it it quantifies an actually benefit to have just 2 years of Tamoxifen.  (You can read that here.) Now that I have two years in I am feeling like my option to ditch is definitely on the table. I would not be alone, according to a 2010 study, roughly half of women stop taking Tamoxifen before the five years are up due to side effects. (You can read more about that here.)

My initial presentation at diagnosis puts me squarely in the camp of those who have the most to gain from taking Tamoxifen statistically. Which is not something tracked in the 2010 study. Which means a woman with either stage 1A or 3C each get one tick in the statistic machine. Even though on an individual scale those two women might be juggling very different recurrence risk scenarios in their decision process. Which goes to show that the statistics are never directly applicable.  To add to the complication for my situation, the statistics on how experiencing a pCR effects things are somewhat lacking.

Sometimes rainbows
Sometimes Rainbows

I keep harking back to the good advice I received from a nurse early on, which was that cancering is all about resilience. I am definitely less resilient in some ways than before all the shenanigans.  I am finding that if I feel a baseline of crappy while on Tamoxifen it prevents me from doing some of the things that up my happiness quotient, thereby reducing resiliency. Which means that it is really important to do those things that increase my resiliency. Which brings me back to the five actions of wellness.

So for now I will carry on until September on my 10 mg dose, which puts the choice point off a bit longer. In the mean time I will attempt to focus on the immeasurable goodness that abounds here with my family during summer on the upper left edge.



6 Comments Add yours

  1. Beautifully written.
    I have no personal experience with Tamoxifen, but I do have much experience with the overwhelming information out there about studies, statistics, what works, what doesn’t, etc. I cope with all of the “statistics” (for brain cancer, they are NOT good), by telling myself that I am not a statistic! Whether I am in the 1% or the 99%, I am me. And whatever happens to me, personally, it doesn’t matter what statistic I fell under – it happened.
    Who knows? Maybe it’s naive, but it helps me get through the day.
    No matter how you approach it all though, it’s so much to process, and even scary at times!
    Nevertheless, I embrace your attitude to focus on the good. I think it’s fantastic advice and ultimately, how I hope we can continue to live our lives.

    1. Iridacea says:

      Thank you so much for commenting. It is very good to connect. very much hope that you continue to be an outlier on the end of the long tail of the bell curve. It is very good t
      Here’s to joy!

  2. AnnCredibleGirl says:

    Oh Tamoxifen, A love/hate relationship. I love that it is keeping me safe from recurrence (by a smidge) but I hate how it effects me. Soreness, weakness, fatigue, and the possibility of cancer occurring else where, such as uterus. That little white pill of hope is also a little white pill of agony. LOL. I must blog about how it effects me soon. You’ve got this girl At least you only have to take it for 5 years, I’m on the 10 year dosage. 😦

    1. Iridacea says:

      A mixed bag for sure. I look forward to hearing your take on “Tam” as my oncologist calls it. Some of the effects started out subtle, which made me think I was just whining about a bunch of unrelated annoyances – which turn out to be all connected to the little white pill….
      Xo iris

  3. janicegstevens says:

    Statistics by nature measure pooled data. They takes all comers into account. Statistics in medicine apply to populations, or groups of people, not to a given individual. Note that any survival curve has a very long tail, indicating those “outliers” who live way beyond everyone else. Statistics are quoted in various including means and medians, which are not the same, and, as you noted, in absolute and relative risks in medicine. It would be wonderful if enough were known to say that a specific individual would or would not benefit from anti-hormone therapy, or any therapy for that matter. I hope to live long enough to see medicine advance to the stage where it is truly more individualized, but that will require some rethinking on the way that clinical trials are performed and on how treatment is paid for (at least in the US).
    As you noted, there are many intangibles that can offer real benefit, which can affect how one person responds. In the end, one has to look at what data is available and decide if it is worth it for his- or herself. No one else can decide how much risk you should take. There is no right or wrong answer. It certainly sounds like you are one who has significant side effects from tamoxifen. I am personally on an aromatase inhibitor, letrozole, and have found that curcumin (CurcuBrain 400 mg daily) has erased the mental fog for me. My hot flashes are always better when I avoid sugar and caffeine and exercise regularly. I know that this does not necessarily work for all.

    1. Iridacea says:

      Well said.
      My son Sam told me a statistics story from WWI – the British army had experienced many deaths due to head injuries in the trenches, and instituted steel helmets. The numbers came back at first that deaths were up, and a decree went out to stop wearing helmets. That is until they realized that deaths from head injuries were way down. The increase in deaths was not related to helmets.
      Like you said, they don’t always show what we think they show at first glance.
      Here’s to all of us being outliers on the beneficial outcomes graph as long as possible.

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