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You may have spotted headlines today claiming that women’s ‘failure’ to take the drug tamoxifen is costing ‘hundreds of lives every year’ in deaths from breast cancer.

The headlines come from research published in the British Journal of Cancer, funded by Breast Cancer Campaign. The researchers, based in Glasgow, looked at the medical records of 1263 breast cancer patients, to see how many completed their prescribed course of tamoxifen.

The authors found that nearly four out of 10 women on the study completed less than 80 per cent of their prescription. Among women whose cancer came back, such ‘low adherers’ tended to have their cancer come back sooner.

The authors, who also looked at a range of other data on the women, calculated that if all of them were to have completed their prescription it would save several hundred lives, and save the NHS around £30 million.

So, what should we make of this finding? Are we to ‘blame’ women – as the tone of some news reports implied – for costing the NHS money by their ‘failure’ to take the drug? Or is it, as so often the case, a bit more complicated than that?

What is tamoxifen?

As many readers will doubtless be aware, tamoxifen is a drug used in the prevention and treatment of breast cancer. It works by blocking the action of the hormone oestrogen, and is usually given to women after treatment for breast cancer, to try to prevent their cancer from coming back.

Research has shown that taking tamoxifen for five years after treatment can prevent breast cancer returning, and save lives.

But, like all drugs, it has side effects. Because it works by stopping oestrogen from having its normal effects, it can cause menopause-like symptoms. In some women these can be extremely debilitating, and some women choose to stop taking it.

How should we interpret the findings?

We spoke to our head information nurse, Martin Ledwick, about what he thought of the findings, and what women should make of them.

“This study highlights the fact that a significant number of women don’t take their tamoxifen – either for as long as they should, or every day as prescribed.  Worryingly, this can make it more likely that their cancers could come back, leading to more treatment and a worse outlook for them,” he told us.

This is an important issue, says Ledwick, and raises lots of questions about whether and how doctors and other healthcare professionals can help and support women to continue with their treatment, or to take it regularly.

However, there’s an important caveat. “The study doesn’t look at why women didn’t take their tamoxifen as prescribed, and doesn’t differentiate between women who stopped taking the drug completely, and those who seemed to take it inconsistently.”

“So to find out how best we can help women to stick to their treatment plan we would need to understand more about why they didn’t in the first place,” Ledwick says.

“Tamoxifen does have side effects, but women have different individual experience of their severity.  Some women find these side effects very hard to bear and perhaps this is one of the reasons why they stop taking tamoxifen.  If women choose to stop taking a drug because of its side effects, it is important that they have made an informed choice,” he says.

But some women in this study took their tamoxifen inconsistently rather than stopping all together.

“It could be that these women forgot from time to time rather than made an active decision not to take it.  Tamoxifen is a drug that we expect women to take long term, so it wouldn’t be surprising that sometimes someone might forget to take it.”

There could be other psychological reasons too.  “Taking a drug every day following treatment for breast cancer might be acting like a daily reminder of their cancer experience for some women, making them less inclined to want to continue taking it,” Ledwick says.

“It’s important that health professionals don’t make women feel they have failed if they find it hard to continue their treatment.  We need to try and find ways of making treatments easier and more bearable,” says Ledwick.

What next?

Until we have answers to these outstanding questions it will be hard to develop specific ways to support women taking tamoxifen.

One thing the medical teams can do, says Ledwick, is to make sure women understand the importance of continuing hormone therapy, and explain the risks of not taking it against the benefits of taking it.  Then if any woman chooses to discontinue treatment they will at least have made a fully informed choice.

And researchers need to continue working towards finding treatments that are easier to take and have more manageable side effects.

Media stories about cancer research can often lead to negative feelings, particularly of ‘blame’, in patients and survivors. Today’s headlines may have been alarming for some – particularly women taking (or who have stopped taking) tamoxifen. If this affects you, you can call our nurse team on 0808 800 4040, or visit our Cancer Chat forum to talk to others in a similar situation.

Henry

Reference

  • McCowan C., Wang S., Thompson A.M., Makubate B. & Petrie D.J. (2013). The value of high adherence to tamoxifen in women with breast cancer: a community-based cohort study, British Journal of Cancer, 109 (5) 1172-1180. DOI:

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Comments

Nan Wallace February 21, 2014

You are not alone, I have stopped taking this horrendous drug as I had no life worth living, every day a horrible drag until I was contemplating suicide. All of the anti oestrogen drugs had similar effects on my body and mind. I have slowly recovered and accept that cancer may return but I need a reasonable quality of life in the meantime. No one seems to be doing research for a drug which wouldn’t have such awful side effects for those of us cancer sufferers who cannot take Tamoxifen or similar drugs. I would defy anyone to claim that 5 years of a nightmare existence, which is what I had, is worthwhile.

sarah February 19, 2014

I was dx 3 years ago this month with both primary and secondary breast cancer at the age of 42. I’ve been on Herceptin ever since the beginning and am on infusion no 49 there are side effects associated with this drug but no where near as many as I’ve experienced with Tamoxifen. I know its the Tamoxifen thats causing all my horrendous side effects because I didn’t start taking it until after my mastectomy which was 8 months after I was dx as soon as I started to take it the side effects started. I’ve been on it now for 2 and a half years and am seriously considering stopping taking it as my side effects are so extreme my quality of life is non existent. What is the point in extending life when you feel fat (I’ve put on 4 stone and suicidal? I can’t function as a human being on this drug, I’ve weighed it up and discussed it with my partner and I’d rather stop taking it and enjoy whatever life I have left as a ‘normal’ person. I tried discussing this with my onc and they just say I must take it, we’ve tried anti depressants and other drugs nothing works at alleviating the side effects. Here’s a list of the worst.

1. Hot Flushes very extreme
2. Hobbling like I am aged about 100
3. Joint pain so severe that sometimes I can’t get up out of a chair
4. Hair growing very slowly
5. Going from a size 8 (was thin my whole life) to size 18 in 2 and half years.
6 . Depression and suicidal thoughts
7. Blurred Vison
8. Bloating
9. Breathlessness
10. Mood swings and memory loss
11. Daily struggle of living with extreme side effects.

Merrrilyn Matthews February 15, 2014

I am coming up to almost 12 months on tamoxifen. I am still seeing my oncologist on a regular basis due to the nasty and horrific side affects of this drug. I managed to work full time through 16 cycles of chemotherapy and then my radiotherapy treatment but this tamoxifen is rubbish. In the first week I was constantly nauseous, this has now settled as have changed brand of tamoxifen and make sure I take it after a full stomach. But the aches and pains are like nothing on earth. I will be 50 this year and before BC (breast cancer) had planned to reward myself with an overseas holiday – this wont happen because I could not manage it. I manage to go to work full time but weekends are spend doing absolutely nothing as I have no energy. I Have not had one pain free day since taking this drug, I regularly have to take strong pain medication just to be able to stand the pain to sleep for the few hours I do at night. The hot flushes are crap. The tingling in my fingers and toes. But the joint pain – I cannot describe it. I sometimes think people think I am over exaggerating when I say I am not going to take this drug any more. My quality of life is non existent. What is the point in beating cancer if you have a miserable existence. I take fish oil, glucosamine, have massages, do aqua aerobics, eat healthy, drink lots of water, rarely drink alcohol as tamoxifen has turned me off of many wines I used to love, as well as many foods I used to love. My next oncologist follow up is in March. Will discuss with him what is next. They are thinking about giving me a course of steroids to see if that helps but yay – more weight gain and apparently send you a little bit loopy. Not sure what if I can continue to keep taking this rotten drug. And why is more research not being done in finding something else that is more tolerable.

Christina Johnston February 14, 2014

I have been on tamoxifen for 3 months. I’m trying to cope, but it’s very hard. I have hot flushes, which are worse at night and because of this I get very little sleep. My body aches all the time and I am unable to do things that I did before without a thought. I’m exhausted most of the time. I get nausea everyday and some days I vomit. I cannot enjoy anything anymore as I am limited to what I can do. I will keep going with the tablets as I am too scared to come of them. Here’s hoping the pain eases as time goes on.

Julie November 23, 2013

I have read this article and comments in an attempt to convince myself to stay on tamoxifen! Surgery was fine, chemo dreadful side effects and radiotherapy a breeze! I have been on tamoxifen for 13 months. I can cope with the hot flushes that occur every day. For me the feeling like I have been beaten up almost every day, walking around some days like an old woman (I am a ‘young’ 48 year old who prior to cancer was a regular runner, and pretty fit for my age), and struggling to get up from a chair cannot help but have a massive impact on the day to day quality of life.
By taking tamoxifen now, maybe it will increase my life by 10 years, but would 10 less years but living normally be worthwhile? However I don’t want cancer to return so I continue, and some days are better than others. I can understand The people who criticise women who come off this drug, but they aren’t the ones living with the severe side effects that some people live with. I will continue as long as I can, and tomorrow hopefully will be better than today. Anyone who has been through the fantastic but difficult treatment that cancer expertise gives has already proven themselves as amazing. Tamoxifen is undoubtedly massively impactive day to day for some. Anyone who knows anyone taking it please give support and reassurance. I know it’s helping extend my life, and I want to see my children grow up. Dig in there ladies….I for one will do my best to!

Dorothy Newbery November 10, 2013

Nobody has mentioned terrible loss of hair, which really worries me.

Kate Mallon October 25, 2013

I have given up Tamoxifen after 2 months. My cancer was grade 1, lymph nodes were clear and I had a mastectomy and reconstruction at the same time. I had already had a mastectomy and recon in my right breast 10 years previous.
The side affects of this drug were horrendous, I am post menopausal:
Constant hot flushes with the perspiration soaking my clothes
Pain in my lower back
Tingling fingers
Joint ache
Nausea
Constant headaches
Itchiness & discharge private parts
Blurred vision
Insomnia
Pain above my eye
Bloatedness
Weight gain – 14lbs
Pain in feet sometimes difficulty in walking
Shivers
Depression
Breathlessness
Throbbing and heat at reconstruction
I approached my GP about the symptoms and was told they may settle down, the breast care nurses all said give it 6 months.
This is a vicious drug which costs around £130 for a 5 year treatment.
My quality of life was virtually non existent so I have decided to take my chances at 63 five years of these side affects is too much.

Nan Wallace October 11, 2013

I would like to know what, if any, research is taking place to find a kinder treatment for women like myself who have extreme reactions to the oestrogen removing drugs currently available ? I tried so hard to comply but was unable to endure the awful side effects.

Richardson Carter October 5, 2013

Standard of Care sucks. Few are cured some for 5 years, but all are tormented some times to the point of no return.
Who came up with the idea, of chemo/radiotherepy?

Nan Wallace September 15, 2013

I started taking Tamoxifen 07.06.11 after one week I had a range of symptoms :-
Severe pain in head above right eye, I very rarely have a headache;
Very itchy armpits, below breasts and behind knees;
Itching and heat in private parts which developed into nappy rash;
Joint aches, particularly knees & small bones in feet;
Sciatica type pain lower back left;
Increasing breathlessness;
Fatigue and insomnia;
Brain freeze & memory loss;
Blurred vision;
Difficulty walking any distance and climbing stairs and I live in an upstairs flat and was trying to nurse a dying husband.
Stopped taking this drug 27.07.11. I had no quality of life.
I also attempted to take Femara, Aromasin & Arimidex with similar lack of success, similar or more severe symptoms.
I tried really hard to take these drugs as it was impressed upon me how important it was for my long term survival but sadly I cannot tolerate the side effects. I have recovered from most of the above and at 72 hope I have a few years left.

Louise Stedman September 9, 2013

I count myself lucky as my side effects have been minimal compared to many. The list of side effects is extensive and many more appear on cancer forums that are not officially listed. I myself have been experiencing a slightly elevated body temperature that comes on around one hour after taking Tamoxifen and remains between .5 and 1c degree up all day. Low grade fever has been experienced by many but is not listed as a side effect.
I can’t speak for everyone, but I have not been given any support with Tamoxifen since being prescribed it after surgery a year ago. If we were seen regularly by the nurse or GP to chat about how we were coping I’m sure many more women would stick with the drug. There are things that can be done to help some of the side effects but none of this is explained or offered. I suffered heavy menstruation for months which lead to anaemia before I finally managed to get help in controlling things better. Despite being given more drugs to take I am largely managing things myself as no one is in the least bit bothered about a follow up. That’s where the whole tamoxifen therapy is falling down. We need on going support.
At my two week post surgery check up I was given a prescription and told to take Tamoxifen for five years. That was it. No follow up until one year later at my annual check up. By that point many women have indeed given up as it all becomes too much to bear on top of the cancer itself.
I am not in the least bit surprised by these headlines today

Louise September 9, 2013

I am 2 years post chemotherapy, and am 36. Its very worrying to me to read these findings. As most normal people do forget from time to time to take any medication. I myself missed a day last week, but I would never consider stopping taking Tamoxifen, I have even asked my Oncologist if I can stay on it for 10 years after reading that this is more beneficial. I do find the side effects very hard though, as I still haven’t gone through the menopause and my hot flushes seem to be worse when I am ovulating but I am learning to deal with it. As its not as bad as Zolodex which is what they gave me though my chemo to preserve my fertility.

jackie white September 9, 2013

i was on Tamoxifen for 9 years and had all the side efacts but i put up with it as i just wonted to live .

Jacqui September 5, 2013

Brett, it is impossible to describe how unbearable the side effects can be (although I did try in my earlier post). I felt a complete failure giving up on just a simple tablet when I had coped with chemo and radio treatments. Unfortunately I just could not bear it any longer.

Martha H September 5, 2013

Brett, it’s because sometimes, the side effects become unbearable.

Brett James September 5, 2013

My question is why are these women not completing their prescriptions?

rogerivanhart September 5, 2013

My daughter had breast cancer. She underwent the chemo and the other drugs and took the hot flushes and shivers in her stride as she looked after her two young daughters. She had a mastectomy and was declared cured. She was undergoing preparations for a breast rebuild when it was found that a few cells had broken away and invaded her system. She now has cancer, originating from her breast, in her lymph nodes, her lung and her stomach. There is no cure now, just attempts to control the beast within her. She has been given 3-5 years.

Even with treatment, there are no guarantees.

However, there should be no reduction in attempts to give women the best chance of beating the disease and that means via conventional treatment. Some women may give up because of the horrendous side-effects and seek help through so-called ‘alternative’ therapies. They do not work.

All too often, women are given support during the early stages of treatment, which then drops off later on. It is my firm belief that women should be offered what could be called complementary therapies on the NHS. These could be in the form of massage sessions, pampering and counselling throughout their treatment and beyond. It shouldn’t matter that there is little or no beneficial medical treatment, other than the placebo effect, it is the human contact that matters, the feeling that someone cares.

As I said, there are no guarantees but if complementary therapies made the treatment at least bearable, and if it gets women through their treatment, then the cost will be well worthwhile.

Jacqui September 4, 2013

I started Tamoxifen when I finished chemo at the age of 48 and almost immediately started to get hot flushes. Within a couple of weeks they were occurring every 20-30 minutes, all day and all night. I had never experienced anything like it, the heat was intense, I couldn’t breathe and suffered palpitations.They completely dominated my life, wrecked my sleep, dictated what I wore and affected my ability to concentrate. My work suffered, I was regularly reduced to tears and felt guilty that I was not coping, especially after I had managed almost a year of surgery, chemo and radio.

I assumed that the effects were so drastic because I was pre-menopausal so decided to stick with it, thinking things must improve. They did improve but not enough……3 years later I was still getting about 12-15 flushes a day, was depressed, felt frumpy and middle-aged. In desperation I gave up and my oncologist reassured me that 3 years would give a significant improvement in my chances.

Sadly, another 3 years on I am still getting hot flushes but they are considerably fewer, seem to be more ‘normal’ and are much easier to cope with. I am not going to let these new headlines get me down!

Mary Cornall September 4, 2013

I am a 58 year old women taking Letrozole. I have been through the menopause prior to breast cancer. I suffer from hot flushes, joint pain and breast pain in unaffected breast. I am 12 months post treatment but I can cope because I am still alive.

carol murray September 4, 2013

I took Tamoxifen without fail… despite the horrible side effects. ..more backup help for patients experiencing them would give better understanding… patients would feel support ef into keep taking it. My cancer has come be despite taking it every day. .I’m now on letrozole, Zometa and Zoladex. ..the side effects are so much worse….but im still here!!!!

Mr Lenoard Canham September 4, 2013

My wife who is 57years old has been taking tamoxifen every day since her breast cancer surgery two & half years ago, she gets really bad hot sweats but only at night, she has put up with this since she has not gone through the menopause. Since our last visit to hospital for her 6 monthly check up the consultant said they are now going to take her of tamoxifen & put her on another drug as she should have gone through the menopause now, hopefully this will stop the night sweats.

Martha H September 4, 2013

I am a 52 yo 2.5+ year breast cancer survivor (from the U.S.) taking tamoxifen, and I have two observations to share:

1) The mother of a friend of mine died from breast cancer after being unable to take her tamoxifen. It was not the menopausal side effects that prevented her from taking it. It was the bone and joint pain one often experiences in the first 3-6 months. For my friend’s mother, the pain was just too great — to the point where she could not walk and had to crawl upstairs. I too experienced joint and bone pain during about the first 4 months I took the drug, but having had already experienced OA in a hip, I could muddle through, telling myself that this particularly nasty side effect would subside. And it did, thank goodness.

2) I have been known from time to time to skip a dose. I have never been told that skipping an occasional dose could be harmful. I would venture a guess that this is new information and needs to be shared with patients sooner rather than later. I am an educated (masters degree) woman, and had developed the rationalization of, “Oh, gee whiz…I’m going to be on this stuff for 5 years or longer…what’s it going to hurt if I missed a dose this month?”

I won’t be missing any doses in the future…I guarantee that. And oncologists need to provide more support to their patients to get through the side effects, especially the joint and bone pain.