Half of breast cancer patients treated with antihormonals are noncompliant ie, do not
 

take their medications as directed


Fewer than half of breast cancer patients adhere to hormonal therapy regimen, study finds

A new study of nearly 8,800 women with early-stage breast cancer found that fewer than half – approximately 49 percent – completed their full regimen of hormone therapy according to the prescribed schedule. Investigators found that younger women were particularly likely to discontinue treatment. The findings underscore the need to both better understand the reasons behind such treatment non-compliance and also develop interventions to reduce it.

"We were surprised to see that so many young women stopped treatment early, despite the fact that the therapy has a proven track record of reducing breast cancer recurrence," said Dawn Hershman, MD, associate professor of medicine and epidemiology at Columbia University Medical Center, who led the study. "Perhaps we need to do a better job of making patients aware that to get the full benefit of treatment, they need to take their medications on time and for the full duration."

While up to five years of oral hormone therapy (such as tamoxifen and aromatase inhibitors) for hormone-sensitive breast cancers is frequently prescribed to reduce the risk of cancer recurrence and death, some previous small studies indicated that only approximately 40 to 60 percent of women finish their recommended course of therapy. In order to provide a more comprehensive perspective, Dr. Hershman and her colleagues examined automated pharmacy records of 8,769 women diagnosed with stage I, II or III, hormone-sensitive breast cancer between 1996 and 2007. They used the records to identify hormonal therapy prescriptions and refill dates. Each woman filled at least one prescription for hormonal therapy within one year of diagnosis. Women used tamoxifen (43 percent), aromatase inhibitors (26 percent) or both (30 percent).

The researchers found that women under age 40 had the highest risk of discontinuing therapy early. By 4.5 years, 32 percent of all patients in the study had stopped taking their hormone therapy, and of those who did not stop, only 72 percent finished on schedule (meaning they took their medication more than 80 percent of the time).

They found that in women younger than 40 and older than 75, those who had lumpectomy as opposed to mastectomy and those with other medical illnesses were more likely to discontinue hormonal therapy early. Asian/Pacific Islander ethnicity, a history of prior chemotherapy, being married and longer prescription refill intervals were associated with completing 4.5 years of hormonal therapy. Longer refill intervals meant fewer chances to not refill prescriptions.

"Physicians are often unaware of patient compliance, and this is becoming an increasingly important issue in cancer," Dr. Hershman said. "It's very disturbing that patients under 40 had the highest discontinuation and non-adherence rates, because those patients have the longest life expectancy. If we can better understand the issues surrounding compliance with hormonal therapy, this might help us understand why patients don't adhere to other treatments that are moving out of the clinic and into the home, such as oral chemotherapy, as often as we would like."

She added that there are several possible reasons for halting therapy early, noting that 13 percent of the women delayed getting their first prescription refilled. These factors can include the side effects of the therapy, such as joint pain, hot flashes or fatigue, a lack of understanding of the benefit of the therapy, and high costs of medications and/or insurance co-payments.

ASCO Perspective

Jennifer Obel, MD, member of ASCO's Cancer Communications Committee

"This new study reaffirms some worrisome trends for women completing hormonal therapy, and brings up the larger issue of non-compliance for cancer therapies in general. As we increasingly move treatments out of the clinic and into the home – we now have more than 50 oral chemotherapy medications – compliance has become a significant problem that hasn't been addressed very well. Patients tend to underestimate side effects and under-report events that happen between clinic visits. We need to identify reasons why patients don't take their drugs before we can find ways to reverse this trend."

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

"We were surprised to see that so many young women stopped treatment early"
I can't believe that doctors who prescribe these products can say such things! They perfectly know what total deprivation of estrogen does.

These medications can save your life but they sometimes have severe side effects. I do hope one day they will find another way to protect us than to make us age in an accelerated way, dry us up and make us suffer from joint pain and other problems such as loosing our hair but having it grow all over our face, putting us at risk with cardiovascular problems; putting dozen of pounds on, impairing our brain; killing our sex life etc...
I do understand that we must suffer through all that to survive but I can understand that some women stop. I would like these Doctors to feel just one week what I feel.
They should be working on helping with these side effects and not denying them.
I am sorry. I am angry. This is not positive but I am not advising not to take these therapies. I am happy they exist. I am just mad to read that such eminent doctors say they are "surprised".
Michka

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Michka,

I am there with you. When my Vaginal Atrophy worsened from AI's to the point where I could no longer have a proper pap smear, I told my onc I wanted ER tx for it or forget it. I swear, his response to me was, "Vaginal Atrophy? How do you get that?" He looked it up on the computer while I sat there in the waiting room. He okayed the therapy, which I did, and I have gotten some, but not all of the function back. Not wanting to be on either drug, I stopped the AI after three years last September and the ER tx shortly thereafter.

This "head in the sand" approach on the part of medical providers has got to stop.

Hopeful

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Count me in gals... I think the s/es are def. worse for us younger gals (under 50 or so at diagnosis) because we have not yet gone through menopause, and then we are slammed into it.
I think many oncs. have the attitude of "suck it up" in regards to our joint pain, vaginal atrophy, etc. Lose weight, the excess pounds are not good for you... Uh, yeah I know that, but since I have been eating zero carbs, almost no dairy, very little fruit, and existing on probably 1200-1400 calories/day... please explain to me why I have gained about 25 lbs. since I've been on the anti-hormonals - Tamoxifen and now Femara.
Constant UTIs, no energy, etc. etc.
Of course we are grateful we are alive, and have these meds to help prevent recurrence, but QOL is important too.

all the best
caya

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Hear! Hear! Chiming in on the anti-estrogens suck thread! I know I am counting the months until I finish my hormone deprivation therapy! Do not even try to talk to me about another 5 years.

I chug along and try not to fuss about it figuring this too is my lot in life, but for docs to express surprise that patients blow off their treatment means they have no comprehension of how great the suffering is for most of those subjected to the therapy, and frankly that is plain pathetic.

Ok. Venting again tonight! Sorry.

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

I think there are a lot of reasons why younger women stop using these drugs. I agree about some of these doctors asking us! Although I have been on Tamoxifen since Nov. '08. I thank God I haven't experienced the joint pain (except for my right knee, but people just tell me I'm getting older!) Love it! We are young and this wasn't supposed to happen to us, we aren't suppose to go into "chemopause" at age 34! Our hormones are up and down, our sex life is kaput! What can I say, but there are some days that life just sucks! What about having another baby??? Perhaps they decided to go off because of that. How about being slightly ER+. Does it benefit? Who knows, cancer is smart and none of us know! Why do some people who are only Stage 0, go to Stage 4 within a year or less?? Why does someone who has Stage IIIc survive for many, many years, while another one has mets within 2 years! Sorry, just in a mood tonight and need to vent! So many unanswered questions and it is all too confusing at times! And if I hear one more time that having a positive attitude you will live longer... bull shit! My mother had the best attitude and cancer took her life! I'll be damned if it takes mine too!

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Compliance is a huge issue... the more our treatments move to oral/at home meds, the more of an issue it will become. In my humble opinion, people don't take oral meds that are self administered as seriously as infusion that must be administered by a nurse/medical facility.

I am guessing that if anti-hormonals were nurse administered, more would be sure they take them, and less would complain about the side effects, as with the really rough chemos.

I have always taken my AIs religiously, as well as my Tykerb, Xeloda, etc. The one that I was pretty bad with was Fosamax. But now that I get Zometa, it's not an issue. Also, I am terrible at taking my daily vitamins... I am lucky if I take them twice a week...

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

I don't understand what you are saying here - that complaining is to be discouraged, because treatment is supposed to be tolerated no matter what? How will treatments improve with regard to sparing our QA if no one complains?

Hopeful

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Not what I meant at all. Sorry for the confusing verbage and now I can't remember what I point I was trying to make when I typed that.

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Brenda,

I know that feeling all too well!

Hopeful

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Brenda, I take my own religously as well...I can handle anything but cancer!!!!

I think you were making the point (and I agree) that if we were to go to a hospital or centre for this we'd take it more easily.

I've been fortunate compared to these ladies, and have just have the old lady/joint pain to contend with but despite that, I want to stay on this med for as long as it keeps me cancer free:)

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

I agree totally and this doesn't make us feel any better
but left on own own to take it, compliance goes down
when self administered. ie vitamins, etc. I have never
missed a pill because my Dr. put the fear in me, your
estrogen levels are high and you must take this. Still
doesn't make me feel good but I'm alive.
patb

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

The bigger point in all of this is the statistics on how antihormonals help us. Are they actually better at preventing recurrence than indicated (if you are religious and take them everyday as directed)?

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Well, Becky, I thought the very same thing. If they throw out the non-compliant folks from the mix, will the benefit percentage increase? Hope so, 'cuz I take the little weeny pill faithfully. I am always amazed that such a tiny pill can wreck such havoc!

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Ditto here...completed 4 years and 6 months and said,"Enough". Spent 4 1/2 years in severe pain in the hopes of preventing a recurrence. Feel human again and only time will tell if therapy was/is successful. We need options that don't suck the joy out of the life we have. I could not stand to walk especially after 10 hrs a day on my feet. Lived on pain meds and now I dont~
Just my 2 cents,
Marcia

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

My onc's suggestion was to take a "vacation" from the meds for a while, to see if the symptoms improved. I am sure he is not the only doc who suggests that to their patients. The issue isn't just one that, left to their own devices, people will blow off their meds.

Hopeful

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

I identify with just about all that is being said, and am contemplating stopping four months early myself.
And keep in mind, the cost of the drug for those of us who do not have insurance to cover it is always a factor.

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Hopeful, the "vacation" or break was suggested by my onc also. Said it is not uncommon. In my case I was having painful trigger thumb and we took the break to see if it was caused by Femara. Which proved to be the case. So after my break of about one month, I started Aromasin.

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Bonnie, that is exactly my point. If we are supposed to take the drugs continously without interruption to get the results they got in the trials, but the SE's are so severe that the oncs who prescribe them tell us NOT to take them for a while, it means that not everyone who fails to be 100% compliant with the regimen is doing so because they forgot to take the pill or because they decided on their own that the SE's or the cost was too much. It also says, IMO, that docs are sensitive to QOL issues when presented with a patient that is insistent that dimesion be attended to. I don't see how bringing someone into the doc's office so nurses can scare the beejeebers out of them with boogeyman tales about what happens to good little bc patients who don't take all their medicine, regardless of how bad it makes us feel, is the best way to go. We need to yell loud and long about how bad it makes us feel to as many people who will listen, most particularly the docs, or else nothing will ever be done to research ways to avoid or ameliorate SE's, much less do a better job of figuring out just who should be treated and who shouldn't. These drugs are about risk management, and that is what needs to be stressed to the patient, so the patient can make a decision about how to best manage her own risk and maintain her QOL.

Hopeful

Re: Half of breast cancer patients treated with antihormonals are noncompliant ie, do
 

Of course age probably is a factor too...I was already menopausal so did not have to bear being plunged into that state. But the AIs certainly exaggerated all the discomforts! Esp since for years prior to cancer I had taken HRT.(which probably fed the cancer, but that is another story)
And a short break from meds is not the same as discontinuing. My onc explained that switching them through the course of treatment can releive symptoms for awhile. Since we all seem to react differently to the drugs even tho they all do basically the same thing. So it buys time to finish the course of treatment. But there is no denying that our QOL has been compromised.