Tamoxifen, my new best friend

Ah, tamoxifen.  Nothing quite like it to divide groups of cancer survivors.

Go on, just look at any forum for breast cancer survivors.  Find a couple of survivors and ask them what they think about it.  Join me at my cancer rehab exercise group, very first day a long-term survivor there brought up how she refused to take it all those years ago and, hey, still alive thank you very much.

As for me, I love the stuff.

For those of you who aren't going through it, tamoxifen is probably something you've never heard of.   But if you've had breast cancer or are close to someone who has, it's going to come up.

Tamoxifen blocks estrogen receptors on cancer cells--in some other parts of the body it acts like estrogen and in some it also blocks.  Many breast cancers are what's called "hormone positive" which means they feed, in part, on estrogen (and progesterone, too, but it's related).  And, thanks to tamoxifen, if you have this ER+ kind of cancer, it's considered a good thing compared to ER- because drugs like tamoxifen can help keep it at bay.

Tamoxifen has been around a long time, it's been generic for over a decade and was, of course, patented before that.  There are other options for women who have gone through menopause (either natural or long enough from chemo to know it's permanent) and don't have bone loss or certain other conditions, but for many women, women like me, tamoxifen is the only real game in town. 

And, unlike chemo and radiation, you keep your hair, don't lose your white blood cells, don't get nausea or neuropathy or any of the other not so fun side effects, and it's just a pill to swallow and you're done.

So, you may be asking, if tamoxifen is so wondrously fabulous, what's not to love?

Well, it's not without side effects, and there's lots of discussion about them, and, frankly, lots of fear.

The biggest side effect for many people, myself included, is hot flashes.  I've been having those since before tamoxifen when chemo put me into instant menopause (did you know aggressive chemo regimens did that?), but tamoxifen can keep them coming.  In my case, after almost a year on tamoxifen and a year and a half since chemo, they're getting less frequent, but still there.

The other one lots of women talk about is weight gain.  I haven't had that one, or at least not that I couldn't better correlate to excess ice cream and lack of exercise, and my oncologist says that one hasn't been shown in clinical trials and people seeing it may really be seeing their metabolism slow down as they get a bit older.  But it's one people talk about--when the no-tamox woman in my exercise group heard I was taking it, the first thing she asked me was whether I gained a lot of weight on it.

Joint pain is also mentioned a fair amount.  I wonder about my current hip thing, but it's pretty constant and doesn't move from joint to joint and it does seem better after almost 2 weeks of rest, so probably not, but who can say for sure?

But aside from those, which, let's face it, are annoying but not serious, there are some rare but serious side effects like blood clots, cysts, thickened uterine linings, and in rare cases uterine cancer.  And if you read all the things that don't come out in studies but people blame on tamoxifen?  Lets just say it covers a lot of ground.

So, why do I take it?

Because, simply put, it gives me a much better shot at staying alive.   Tamoxifen adds 18% to my odds of living past 50--for those of you who care about stats, that's absolute risk, not relative, so 18 out of every 100 women in my position (Stage III, grade 3, and some other particulars that matter) would be dead in 10 years were it not for tamoxifen.

Let that one sink in for a minute.

How much it helps any one person depends on the characteristics of her particular cancer and what your risks of metastasis (aka stage IV, cancer back in places like your brain, liver, lungs, bones) are in the first place.

And that's something your oncologist can talk over with you.

But, for many women, myself included, the risk of dangerous side effects is so much lower than the risk of cancer returning.  And once cancer returns outside the breast, you may be able to keep it contained for some time, but you're pretty much guaranteed to die of cancer (eventually, hopefully) and be in treatment on a constant basis before that.

So, knowing that, I pretty much willed myself to be grateful for tamoxifen.  I decided to make it my new best friend, because, really, working daily to save my life is a pretty friendly thing to do.

This is what I believe about tamoxifen:

• It is not a money making ploy by "Big Pharma" and your doctor doesn't make money by prescribing it to you!  Come on, it's generic and has been for years--no pharmaceutical reps are pushing it to doctors, no one is fudging the figures for the past 20 years.  That's just silly.  (I'm planning on addressing this kind of thing more in a future post, but I need to get it out while I'm on the tamoxifen topic)
• There can be some annoying side effects, but for me and many other women, it's a choice between hot flashes and greatly increased odds of death--trust me, I can buck up and take the annoying side effects in exchange for, you know, life.
• There are some risky side effects, but if you're concerned, talk to your oncologist.  No really, sit down and talk to your oncologist.  That's what you pay her or him for.   Your oncologist has the figures and can talk to you about them.  But if you have a 0.1% chance of blood clots with it and a 18% greater chance of being dead without it, well, you've probably placed bets with worse odds than that.
• The annoying side effects stop when the tamoxifen stops.   A lot of women seem to be afraid to even start taking it, but if it gives you real trouble, you can always stop taking it (but, please at least talk to your doctor about substitutes (like ovarian suppression and AIs) that might be better for you).
• The annoying side effects may get better with time.  It's anecdotal, but lots of women say they do and that seems to be the case for me, too. They're now saying 10 years on tamoxifen is a good idea, but remember you may very well find it's 1 year of hot flashes and 9 years of perfectly normal life. 
• There are some things available that can mitigate the side effects--if you're having a really hard time, talk to your doctor before you just up and quit.  There may be something easy you can do to fix the problem and still get that better shot at living.  
• Tamoxifen is tamoxifen.  You may be the classic black box warning for some other drug, but that isn't much of a predictor for how tamoxifen will interact with your system.
• The truly sucky thing about cancer and mets is there are no do-overs.  With all this cancer stuff it's true, and it stinks.  There really is no, "I'll try x and if it doesn't work, then I'll do the something else," and that scary.   It's literally life and death here.  Sobering, frightening, but maybe also focusing in its own way.

It's kind of funny, I hate disagreeing and generally avoid confrontation and confrontational topics.  I guess this tamoxifen thing has been kicking around in my head too long and seems to have built its own soapbox.  Which I seem to have been all too glad to step on and start preaching.

But, tamoxifen is important to me.  If there were 10 of me in a room, two of us would have our lives saved by it.  And I hate the sweaty, blushy hot flashes.  I hate thinking about blood clots and uterine cancer.  And if there is weight gain to be had, that's not something I'd welcome with open arms.

But more than those things I hate wondering if I will live long enough to see my girl grow up, see my unmarried stepkids get married and my married stepson start a family.  I want to grow old with my husband and see how this story ends.

And if tamoxifen can help me make that happen, I am grateful.  Grateful enough to endure some hot flashes and joint aches if that's the price of living.