Breast Cancer Survivors: Daily Hormone Therapy is Tough

I recall very well when I was on hormonal therapy, in my late 30s and early 40s, that I had to force myself every day to swallow that tamoxifen pill, knowing that its side effects were going to make me miserable, and that no remedies were available to make me feel better.

So I wasn't surprised recently by the results from a large study at the Columbia University Medical Center of nearly 8,800 women, all in the early stages of hormone-receptor-positive breast cancer. They should typically have been taking their hormonal therapy (either tamoxifen or an anti-inflammatory drug) for at least 5 years (and possibly for 10 years), and the study was looking at how faithfully these women were taking their meds.

Here's what the study showed:

• Only 49 percent of the women took their hormonal therapy every day (either tamoxifen or an anti-inflammatory drug) for the entire 5 years.
• A full 32 percent of all the women in the study stopped taking their hormonal therapy by 4.5 years or sooner.
• Of the women who did complete the full 5-year course of medication, only 72 percent took their pills at a rate greater than 80 percent of the time.
• The largest percentage of noncompliant women (43 percent) was made up of those who were dodging tamoxifen; the next largest included those who avoided aromatase inhibitors (26 percent) or both (30 percent).

Keep in mind that the whole purpose of this clinical trial was to measure how strictly women were following their dosing schedules. All participants knew that the researchers were keeping track of how faithfully they were taking the drug, and yet many of the women still skipped lots of doses!

Participants were younger women

To make matters worse, many of these women were young (premenopausal) and so could be expected to live longer than many other survivors--which of course means that their risk of recurrence was even higher than for most. It's sad to see women younger than age 40, and at highest risk for recurrence, discontinuing their hormonal therapy.

Why skip a lifesaving pill?

Hormonal therapy can save your life, so why would so many women stop taking these pills? The main reason is probably that the side effects of hormonal therapy are mean. The common, unintended side effects of these drugs include vaginal dryness, hot flashes, night sweats, a waning libido, and joint pain.

Plus, no one's keeping track of the doses she's missing. A woman only starts taking hormonal therapy after she is done with her surgery, chemo, and radiation. This means that the physician who usually prescribes hormonal therapy--her medical oncologist--is no longer going to be seeing as much of her as before. And because the oncologist will have less contact with her, he or she will have no way of knowing if the patient is taking her prescribed treatment.

Personally, I think that if we asked women to tell us (anonymously) whether they took the pill each day, I believe that most would admit that they miss a lot of days over time. This says to me that many physicians aren't spending enough time explaining to their patients (and their partners, if there is one) how absolutely vital hormonal therapy is in preventing their breast cancer from returning.

The incentive I used

Patients suffering the side effects of hormonal therapy need to be protected by truly effective remedies. When I was taking tamoxifen, there pretty much weren't any. So I stuck a Post-it Note on my bathroom mirror, right where I could see it every day. The sticky note read "50 Percent"--that's all. This was my reminder that, just by taking my hormonal therapy pill every day and suffering all its ill effects, I was cutting my chances of a recurrence by 50 percent. Seeing that factoid sticking to my mirror every morning was the incentive I needed (along with my spouse's support) to keep taking the cruel pill until I crossed the sweet 5-year mark.

Some new remedies

Today, we actually do have a few ways to help reduce these side effects, methods that either were undiscovered or didn't exist 15 or 20 years ago.

• Joint pain can be reduced by making certain that your vitamin D level is within normal limits.
• Taking a drug like Effexor--usually a treatment for depression and anxiety disorders--can help control hot flashes and night sweats.
• Using a Chillow Pillow (for sale online) will cool down your head at night. The special cushion is able to absorb heat and then distribute it back into the surrounding air.

A last word of caution concerning tamoxifen

If you are taking this drug but aren't experiencing any of the unpleasant side effects, don't count yourself lucky too fast, especially if you're also taking antidepressants. No side effects could mean that you're not metabolizing the tamoxifen and that you therefore haven't been receiving any of its benefits (good grief!). Go see your doctor for something called a CYP2D6 test.