The troubles with Tamoxifen

I went to my followup visit the other day with my oncologist the other day, and she once again recommended starting tamoxifen. It is the standard of care for ER/PR positive cancers (my tumor scored 60/40); it reduces recurrence rates by approximately 50%; reduces the rate of ‘new’ cancers in the unaffected breast*, also by approximately 50%; and also aids in maintaining or increasing bone density, so it’s the logical next step. It would also need to be started as soon as possible (ideally, NOW) and ideally I’d take it for the next five years, 20 mg per day.

But I don’t want to get on the cart.

Here’s the thing: Tamoxifen reduces the risk of recurrence by approximately 50%, but in my case that translates to a 3% to 5% reduction in my overall risk of recurrence. Without Tamoxifen, my risk of recurrence is around 10%, tamoxifen should reduce that to 7% to 5%. So, 50% doesn’t really make that much of a difference point wise, after all.

Tamoxifen isn’t all sweetness and light, either – it increases the risk for uterine cancer (just about doubles it, from 1 case in 1,000 to 2 cases in 1,000 – still not huge, but enough of a bump); increases the risk of blood clots and stroke (about similar to the risk caused by taking hormone replacement therapy); increases the risk of cataracts; causes menopausal symptoms (no worries there, I’m already in chemopause! hooray for me.); can cause mood swings and other psychiatric problems; and, most importantly for me, has been shown to affect cognitive function in the areas of memory, language, and executive function. These are the same areas that are often affected by chemotherapy and by menopause (and, I’d assume, by chemopause as well).

I already have found myself reaching for words, especially in conversation, and pulling out utterly wrong ones – often from the same general drawer in my mind (though the connections are fairly loose and idiosyncratic) but as likely to be with utterly unrelated meanings, or antonyms, as the more usual ‘close but not quite what I was looking for‘ substitutions. I can hear the words coming out of my mouth, I know they’re not the right words, it’s nonsense, garbage, the trail is lost, and there’s nothing I can do about it. It’s like listening to a stroke patient and realizing that patient is *you* – a completely horrifying and self alienating experience.*

I’m hoping that will improve. I don’t want to risk it getting worse. I don’t want to get on the cart.

I also know that if I do have a recurrence, I’ll wonder if I could have prevented it had I taken tamoxifen, and I’ll hate myself for not taking it. Not that taking tamoxifen is a guarantee against recurrence – one of my local acquaintances is currently in treatment for a recurrence after tamoxifen therapy. If one does have a recurrence after tamoxifen therapy, there seems to be a higher risk of it being a nastier, more aggressive, and more difficult to treat cancer.

It’s an ugly decision. There are no right answers. I’ve looked at the odds and made my decision before; I resent like hell having to do it again. The other bit is that I don’t want to be in treatment any more – I want it over and done with, I want to recover and adjust, I want to get back to my life.

I don’t want to get on the cart.

*A woman with a history of cancer in one breast has a 3- to 4-fold increased risk of developing a new breast cancer, unrelated to the first one, in the other breast or in another part of the same breast. This is different than a recurrence of the previous breast cancer.

* I’m also noting a certain laziness in writing, repeating words – the word *works*, there’s no problem with it, but do I really need to use it repeatedly in one paragraph? Do I not have any synonyms at my disposal?

I pick this – and other multiple small errors and awkwardnesses – up only when rereading for the nth time. I was going to go through and make a few small repairs, a few more small repairs, but in the end decided for relative veracity.

poor lil’ bunny.

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6 Responses to The troubles with Tamoxifen

  1. carinamdiaz says:

    I haven’t talk to an oncologist. What I know is my cancer cells do not have those receptors including HER2.
    I am guessing mine would probably hard to erradicate. I don’t know.
    I wish you well.
    I wish “me” well.

  2. Hey there….greetings from the land of Tamoxifen. I took a wee break before starting Tamoxifen and I can tell you right now my issues are hot flashes – brief and annoying like the ones I experienced during radiation and sleep disruption – since I started taking Tamoxifen my sleep patterns are definitely different – I can go to sleep, just don’t stay asleep most nights. I wake up and eventually fall back to sleep

  3. PS I have been to the gyno and the eye doctor to have myself charted so I can watch for other things

  4. Meg Wallace says:

    Since I went through chemo, my ovaries got shut down and I got dumped into menopause… hotflashes and night sweats are part of my life along with other less than wonderful menopause changes.

  5. OMG the night sweats. A few days ago I fell asleep in a cotton shirt I don’t sleep in – I had such a sweat that I woke up and the dye from the shirt was on ME. I had all the flashes and crap during radiation, they stopped and now have started again. So I just refilled my Tamoxifen. Entering month 3. It does screw with my sleep patterns and some days I am really moody. One period only since my surgery – October. I am taking Tamoxifen because the alternative to me for not taking it scares me more than taking it. *However* I do not want to take it. Dunno. Wishing you the merriest of Christmases, Meg. Wishing us all a more fun 2012 :<} Pax

  6. shera says:

    Yup. I tormented over this for about 6 months. I was also able to take the big selling percentage and see it for what it really was — in my case — a 5% advantage of a recurrence. I chose not to take it. Every cell in my body was revolting against it — to the point where my throat felt like it was closing up on me when I thought of swallowing that pill. What also helped me decide was comparing BOTH worst case scenarios — how would I feel with a recurrence after taking the pill compared with how would I feel with a recurrence after choosing not to take the pill. Because, both happen. I would feel much worse getting a recurrence if I chose to take the pill and it didn’t work — because my body’s immunity would be a lot worse and I’d be pissed that I suffered the pill for nothing. On the other hand, if a recurrence happens while not taking the pill — I have accepted this gamble as my choice. Meanwhile I am doing what I can to strengthen my body and immunity. Maybe comparing both worse case scenarios can help you find peace with your decision. No matter what we choose — there are no guarantees.

    And perhaps this will also help. Taking tamoxifen would have reduced a new cancer in my opposite breast by a solid 50%. Well… last year an MRI scan detected cancer. BUT it turned out to be a false positive. Three doctors believed I had cancer in my remaining breast — even though an MRI biopsy came back negative. Another tormenting decision and I chose to have another mastectomy. Turns out there were no cancer cells in the breast — not even pre-cancer. And I wasn’t taking tamoxifen. I lost a perfectly healthy breast, but it helped me feel even more peace with my decision not to take the pill.

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