I have had to stop taking Tamoxifen. My BC was Grade 1. 14mm and was Insitu. I had Radiotherapy and was put on Tamoxifen at the beginning of the radiotherapy treatment. Friends noticed almost immediately that I had changed but I did not. It took a long time for me to notice that Tamoxifen was having a dreadful effect on me. I was behaving in a very bizarre way, was extremely angry and aggressive and eventually I was not altogether rational. My husband had a very difficult time with me. I took the drug for 15 months and kept reporting what was happening to my GP. Eventually he sent me for a second opinion to a Psychiatrist. I was told by him that I was depressed and should take anti depressants. I decided not to take any more pills. I did not feel depressed and my Cancer Psychologist disagreed with this diagnosis. I was sad as my relationship with my husband is almost destroyed because of this drug and I am at a loss about how to mend it. I no longer take Tamoxifen and am no longer on any drug to help protect me from a recurrence.
Anybody else have something like this and what have you done about future medication to help protect from a recirrence?
Just Read your post regarding tammoxifin and your experience you have had while being on tammoxifin.
I to had breast cancer so was put on Tammoxifin before radiotherapy began but within the first week of taking this drug i started to develop a cough and was told by doctors/ancologist that it was not the drug that had caused this i came off it for two weeks things settled down then was asked to go back on the tammoxifin again and within a week of going back on it the cough and breathless was even worse than before i had to enjure going through radiotherapy with these side effects from tammoxifin
I was repeatedly told it was not the medication and maybe it was all in my mind i eventually ended up in hospital because i could hardly breath.
I have been left with this severe side effect and have to rely on three different types of inhalers to get through on a daily basis and like yourself i am not on any proventative medication for breast cancer recurrence
Tammoxifin is not for everybody and sorry to here of your side effect and hope things get better for you
I read these with interest as exactly the same happened to me. I have tried to take Tamoxifen twice now, once for two months and once or one month. I had extreme nausea, water retention, depression, suicidal thoughts, weird dreams. You name it, I have had it. At the moment I am not taking anything, but my oncologist is not happy, she wants me to go on AIs, which I am not going to due to the bone issue, so it is an ongoing battle with her.
I am quite relaxed about taking nothing. I would rather risk a recurrence than feel like I did so maybe this is the risk I have to live with.
I have two months before I see her again so a time to rejoice in starting to feel well again.
Sam
I had a lumpectomy in December which showed clear margins and nodes. I opted out of radiation because I could’t get the external beam targeted to the surgical site that was only five days. For my low grade stage 1 cancer, anything else was overkill IMO. As a compromise, I agreed to take tamoxifen. I’ve been on it for three weeks 1/2 of the recommended dose to allow my body to adjust. In the meantime I’ve caught a flu bug so it is hard to tell what is a symptom of tamox or a symptom of the flu, but I have been exhausted. I take a two hour nap, get up, and an hour later I am exhausted again. It’s been seven days.
I was taking some complementary treatments…IV infusions of Myers cocktail which is vitamin C and B vitamins with a load of antioxidants. It didn’t do a thing to stop the flu bug, but may have lessened the severity of the symptoms.
I’m going to give this another month or so, but if things don’t get better, I will be looking for an alternative and it won’t be an Al.
What is Extremsane?
Hi Kaara,
Sounds like your symptomns are tamox related, from my own experience.
As far as I know there are no alternatives other than an AI, of which Extremsane is on (I think that’s its generic name).
I have told my oncologist that once the effects of the Herceptin are out of my system and it is clear of all drugs I will give Tamox another go at half a dose and see what happens.
But for now am not even thinking about it really.
Many thanks to everyone who has written about their extreme side effects to Tamoxifen. I was back and forth to the Doc who kept saying that it was not the drug and advised me to keep taking it. It was only when I flatly refused to take it that he did say that everyone reacted differently to the drug and that I was one of the unlucky ones and agreed that I could stop. It was suggested that I take Letrazole which acts in a different way to Tamoxifen but there were no guarantees that I would not develop a similar reaction. The latter was not said by a Dr but by a nurse. I am still debating what to do and am being very careful about my diet.
Broadly speaking Tamoxifen cuts your recurrence risk by 50% for oestrogen positive tumours, this figure varies from person to person as some of us metabolise it less efficiently (it’s one of the breakdown products that does the work of blocking the oestrogen that feeds the tumour). It is not magic just because the docs give it out and there is a lot you can do yourself to reduce the risk. Going organic-dairy or dairy-free means you are not polluting yourself by drinking from oestrogen-overloaded cows. Exercising 150minutes plus per week brings the oestrogen down naturally by converting more of it to androgen thingies - and you get feel-good endorphins too - and in addition will help to reduce any overweight, this will also reduce risk of type 2 diabetes, stroke, high blood-pressure and a host of other ills. But the drug companies don’t reward the docs for suggesting this healthy alternative approach, and the docs don’t seem to believe we are capable of doing it in any case. Personally my brain really didn’t cope with Tamoxifen so I came off it and took the responsibility for doing these alternatives myself as far as is reasonably practicable (eg this does not involve applying for an allotment so i can wreck my back and provoke my lymphoedema by digging my own organic green veg, but i’m happy to buy them) the docs are mad at me for this but at least i’m sane. I don’t recommend what anyone else should do, this is just my story and it’s a considered risk i chose to take. There may come a time in my life when my responsibilities are much less and i can afford to drift round in brainless gormed-out bemused haze, or run down the high street brandishing an axe and get myself arrested, but not right now thanks. A psychistrist might appreciate where I’m coming from but I don’t think an oncologist ever could unless they have experienced mental imbalance for themselves and had to take these decisions. What they can do is give you your personal recurrence stats, based on the details of your own tumour which will differ from mine, and it’s also possible to test how well you metabolise tamoxifen, on which to make your choices.
I had a terrible time on tamoxifen, it didn’t suit me at all. I was fortunate that, although I was just 42 and not in menopause, my Oncologist and Consultant agreed that I could have an oophorectomy and go onto letrozole instead.
Drastic for sure, and there are other risks caused by the oophorectomy, but the letrozole suits me much better. I still have side effects, but they are physical rather than emotional/psychological and I can cope with them in the interests of doing my best to avoid recurrence.
Very interesting reading all of the above…its very brave women who choose to stand up and say how it affects them. I have a 5% increased chance of survival from taking tamoxifen and I have been on it for nearly a year now. I hate the drug with a vengeance and it messes up my life in a lot of ways…and so am looking at brassicas and a substance called indole 3 carbinol…anyone else looked at this alternate route?
Very interested in what Hymil has said as I was jumping in the air and swinging from the lights. I was also fairly aggressive towards my husband at times and on these occasions I was quite unpredictable.If I thought that he had dared to talk about me to anyone I would confront him and argue with him about my personal medical details being private. People used to ask how I was and of course he had to be so secretive about what he said in case I brandished my axe above his head.I can relate to the image of running down the High Street brandishing an axe. I did find my oncologist fairly sympathetic but of course I am now in a dilemma as to what to do next. I have not taken Tamoxifen for almost 4 months and as the drug has a half life it left the system some time ago but the after effects are still with me and I do not know when I will return to “normal”. A nurse told me that this I have had a drug induced psychosis which is different from the other kind.I was also alarmed when I discovered that the psychiatrist that I saw wished to treat me with antidepressants and Tamoxifen as I was “depressed” and the Clinical Psychologist who specialised in dealing with Cancer patients said that I was not depressed. I guess there are always different opinions in every walk of life.
Hello Ladies
I am so pleased I found this discussion - I too have justed made the painful decision to stop hormone treatment. I had been on Taxofifen for about 18 months with the side effects very slowly getting worse, so didn’t notice the change myself - but I was literally ready to take someones head off either at work - or my lovely OH who has tried to be understanding but I certainly push this to the limits!
I had a two month break, in which time I felt I was returning to the old me, pre BC! (I’m 32, and felt I’d finally got my life back). After feelings of guilt / what if it comes back, I spoke to my onc again, and decided to have another go at Tamoxifen - but within 6 weeks I stopped - the aggressive me was back!
After more discussions with onc & wonderful nurses at my hospital, I decided to try Zoledex & Arimidex - and so wished I hadn’t. I can honestly say its takes ‘feeling low’ to a whole new level - feeling murderous / tearful / suicidal all within the same 10 mins!
I spoke at length eith my GP, who was wonderful - and am seeing my onc next week - but I didn;t go through with the last zoledex injection and have been off tablets for just over a week - and already I can feel the black cloud lifting!
Just need to tell my medical team now 
I can’t tell you how great it feels to not be alone in this!
Carly x
I really do think the dreaded Tam has done a lot to steal my personal resilience. Not saying that life away from cancer has been a bed of roses in the last 15 months (anything but, more like a bed of hungry triffids!) but I know I would have been able to cope much better with all the rubbish previously, before Tamoxifen. Just have no inner strength left.
Saw my surgeon for 1-yr checkup (a bit late, was diagnosed in December 2010) and voiced my concerns over Tamoxifen. Bless the lovely lady, she has given me permission to stop Tamoxifen for a couple of months and see if that helps. She said that people on her books who’ve done that go back on it and have no further problems, so I’m hopeful. But meantime, that’s that for Tamoxifen until 1st May!
Could Tamoxifen be the real reason why such a high percentage of patients end up being treated for depression? Wouldn’t surprise me in the slightest.
Oh, oh, oh - this is EXACTLY what I was looking for to help me out this Wednesday, some backup to my argument with the oncologist against being put on Tamoxifen. Thank you all so much!
I had Grade 1 tubular cancer (ie, really slow-growing but oestrogen-receptive) with an 8mm tumour - they couldn’t even find any cancer cells in the mass they removed during my lumpectomy in December, and after more MRIs, ultrasounds, etc, they reckon the gremlins were removed during the original biopsy, six weeks before my operation.
I’m on Week 2 of six weeks of radiotherapy, and I’m pretty convinced that this is - as you say, Hymil - over and above what I need for the cancer I had. But I’m going with it, I’ll do this bit - and I’m truly grateful that so many people are taking me so seriously.
But I SIMPLY CANNOT risk going on a potentially depression/ agression-inducing drug for five years - heck, even for one year. In my current personal situation I would have very little support for coping with that, plus I have a young son. No, NO, NOOOOOOOOO!!!
So now to find a way to say that to the oncologist without her thinking I’m already taking it… I will repeat the words ‘considered risk’ - thanks for that, Hymil, and for all your research-sharing.
And thanks again to everyone for sharing what you’ve been going through - my goodness, this kind of forum could actually affect the profits of the drug companies - we’d better be careful! 
FC
XO
Hardly, FC, it’s only about 30p a pill, and its risk-reducing effects are proven. The question for us all is, though, at what cost.
Oh, right - maybe I got a bit carried away there…
I think some of the other drugs we get prescribed are loads more expensive - I think Herceptin is around £1500 a go, and I’m having 18. And the anti-sickness drugs I had for 2nd to 6th chemo was around £800. And worth every penny!
Hi all,
I’ve been on the tami since October last year first few months the severe hot flushes/sweats really got me down, and according to my OH I was quite obnoxious aggressive and hyper, I have now calmed down, I did try the anti-depressants took one tablet and turned into a complete loon overnight so stopped it dead in its tracks, still suffering with hot flushes more so at night and it does wake me up, occasionally I get very angry and cross but no where near as much as in the first few months, my moods are improving and can honestly say that today I was actually happy :0) I do get some pain twinges in my joints but very rarely, it takes time for your body to adjust to it, I’m with CM on this it’s an old tried and tested drug proven to be extremely effective, I have secondaries and I have come across storys of SBC sufferers being cured or put in the land of NED using a combination of tamoxifen/herceptin if there is a chance that this combo will put me in NED or stop reoccurrence then I’m gonna chuck whatever I can at this. Your right CM herceptin is very expensive i’m on it for as long as it keeps working or forever and feel so grateful that its available to me. Hope this helps.
Sending you all love and light
sarahlousie xxx
Firecracker it’s worth rememebering the oncologist is your friend and wants to offer these treatments to do whatever s/he can to increase your chance of surviving and not getting recurrences, you do have your son to consider. Have a look at alternative/complementary therapies, if you really want to avoid taking tamoxifen then look at what else you can do to reduce your risk. The oncologist will probably be much more happy to work with you (and i don’t think I’d like to be the one working against you!) if s/he can see you have done that, although some take more convincing than others; some doctors are more used to partnering with patients while others still expect to dictate to us what WILL happen, and some patients (I’m told?) do fine on Tamoxifen, we are just the sensitive souls (!).
Sarah-Louise thanks for that perspective. I have always prayed I will never regret my decision, and I think I won’t whatever happens clinically in the future, as *At The Time* I did the best I could with the information, drugs, and support that I had available then in the situation I was in then. There are probably women out there (or maybe looking down from above!) saying, I wish we had Herceptin back in our days; but they didn’t, and in large parts of the Africa there is still no radiotherapy, can you imagine. Mind you, they could use clean water first, and most of them don’t live old enough to get cancer, but it’s a sobering view.
Nice to hear that others have declined Rads or stopped taking the drugs.
I had a 7mm grade I IDC ER+, and I opted out of rads as it seemed like overkill to irradiate nearly the whole 36DD breast and I didn’t dare risk anything going wrong with my arm as I am the main lifter in the house.
On tamoxifen I became the granny & wife from hell with violent mood swings and the leg and foot cramps were agony. One morning I awoke and there was a black curtain across one half of an eye for about 5 minutes. This was classified as a mini stroke. Tests found nothing. Prescribed aspirin and statins and told to get cholesterol down below 4.5 (it was only 5) - I declined the statins as they have side effects as well.
Back in the breast department, as clots are a known side effect of tamoxifen, I was pushed onto an AI. Immediately I developed joint aches and stiffness, although glucosamine & chondroitin did help with that. I lost hair around the temples, and my RSI got worse. DEXA scan revealed osteoporosis of the lumbar region, so was prescribed Adcal and bisphosphonate tablets which I didn’t dare take as I can’t eat an orange on an empty stomach without pain. My GP prescribed Strontium Ranelate instead.
In the mean time I cut out all dairy products and a bit later on I cut out eggs and meat except for some fish. Some 4 weeks after this last diet change I had a blood test as I thought my cholesterol might have come down. Not a chance, it had gone up – another AI side effect, despite the change in diet which had brought my blood pressure down to normal.
The last straw was a bad urticaria type rash across the boobs which wouldn’t go away. I’d had occurrences for years but it was mild and always disappeared after a couple of days. More drugs prescribed. After a week on those I thought enough is enough and I stopped taking the arimidex!
So that was 3 months on tamoxifen and 15 months on Arimidex.
Six months on I feel much healthier than did the fat slug of two years ago who was just as terrified at the pre-op by the high blood pressure readings and the half inch loss of height, as she was of the recent cancer diagnosis.
I take Vit D3,omega 3, selenium, and vit B12 and apart from infrequent small quantities of fish, I’ve been eating plants. I don’t add sugar to anything or drink fizzy drinks and I’ve never eaten white bread or white rice. I have to keep the dark chocolate intake down anyway as I am sensitive to caffeine and I’ve learned to make a pot of white / green tea last all day!
When I see my surgeon this Friday I will break the news to him.
Ah, don’t worry Hymil, I’m not that much of a firecracker in real life… And yes, I will remember that the oncologist is there to help me find the best way to deal with possible recurrence.
But I have had to learn to be quite assertive about medical stuff where I live (not an English-speaking country) as I don’t speak the local languages perfectly. People do tend to treat you differently once they hear a foreign accent, and often assume that you don’t understand when you’re simply disagreeing with them or even just questioning something.
Also, the culture of total deference to anyone above staff nurse status is alive and kicking here, and people very rarely ask questions about treatment of any kind.
So, believe me, I do need to go the meeting with the oncologist pretty well prepared if I’m going to even politely suggest that she consider prescribing me something other than the protocol drugs.
XO