I have just read yet another article on women giving up on Tamoxifen due to its side effects. The research calls for supporting women better to stay on it. ( This has also been discussed in the last year on Women’s hour…)
What support have other women (and men) been given to stay on it?
So far I have had 2 GPs say that it is very benign drug and does not cause most patients any problems. I was in tears, exhausted and not coping with menopause symptoms caused by tamoxifen. I do not get to see an Oncologist again as I am a low risk patient. There has been vague talk that there is significant benefit of me taking Tamoxifen but nothing specific. If I gave up Tamoxifen tomorrow, noone would notice or try to encourage me to continue.
What would I like to see?:
GP prescribing should have computers that highlight when repeat prescriptions are not activated
Better GP awarenes and communication with patients on why they should be taking it, the possible side effects and how to cope, the possible problems if stopping it.
My experience has been that there is no support whatsoever. I had chemo, surgery, radio and Herceptin and was then told “you will now be taking Tamoxifen”. That was it.
I managed to stick it on and off for about 18 months. And yes, I am one of the many in the article yesterday who has stopped taking it.
For me the side effects were worse than the chemo, and I had strong dose dense chemo. It interfered with every part of my life including work and I weighed up the pros and cons and stopped taking it.
I haven’t told my oncologist as she would give me grief over it I think.
I am totally happy with my decision.
It seems to me that women who give up chemo part way through or decline chemo are viewed more sympathetically as it is perceived that the side effects from that are worse, whereas women who can’t tolerate Tamoxifen are blasted from all angles.
As for the article mentioning cost to the NHS, again what about the cost involved in treating women who decline chemo and have a recurrence? Again, nothing gets mentioned about that.
I agree rosebud, SamLee & moorcow- the media reports are very one sided. Also their perception and therefore most of the public, is that we are all on Tamoxifen and that gives the worst s/es. Anyone on hormone suppressing drugs suffers s/es of one kind of another yet the AIs like Anostrazole etc don’t get a mention. Therefore, for example in my case, when friends hear that I am not on Tamoxifen they assume that things are ok for me.
I’ve no doubt that for many of us the 5 year + hormone treatment is the worst bit of the whole thing and it would help if a broader view was promoted - and if named drugs are being used, that the range of options are specified.
We are all on this cancer merry-go-round together and Tamoxifen is not the only weapon!
Apologies for the rant, but I have had lots of problems with Anastrazole and would like a fair account promoted in the media.
Equally, it would help if GPs & Oncs were more honest and supportive of the major s/es many of us have to endure while on these drugs. Tears, anger, misery, pain & at times, almost meltdown!
I know it beats the alternative but golly it’s not easy…
All the best girls xx
Interesting ‘Womens Hour’ Radio 4 discussion about Tamoxifen today and the fact that women who are suffering from side effects should be offered support, worth a listen on the iplayer (its at the start of the programme) here’s the link bbc.co.uk/programmes/b039d4b6.
This report made the front page of The Times. On the one hand I was very pleased that someone was at last taking notice of the problem, on the other I was really cross that it has taken a study to conclude what breast cancer patients have been complaining of for years. Tamoxifen has been around for a long time, I assume that patients have been having problems with it for just as long, so why has no-one taken any notice of us up till now?
My experience of struggling through five years of it, was that no-one wanted to know about the problems of side efects. Oncologists just shrugged their shoulders. I only got help from my GP because I found out here what other people were taking to help with the hot flushes, and went to my GP armed with a list of possibilities and asked him to prescribe one for me.
Looking back over everything from dx in Feb 2007 to now, easily the worst part of the whole thing has been the hot flushes. Chemo was horrible, but it was 8 cycles and then it was over. Sleepless nights just went on and on. It was difficult to function as a human being at times.
The problem may be that hot flushes can range from mild to severe - I think the general public perception is of the mild variety. I have now experienced both tamoxifen flushes and natural ones, as I have been ‘lucky’ enough to come out of my pseudo menopause after finishing tamoxifen, aged 50, have a couple of periods, then go into a natural menopause. So I am still flushing merrily, and very fed up with it, but the hot flushes I am having now are nowhere near as bad as the tamoxifen induced ones. Maybe the medical profession has never taken on board how debilitating and life affecting the severe flushes can be, and that the drug induced ones are far worse than natural ones?
I really want to stop taking it. My oncologist was adamant that Tamoxifen has no side-effects. I feel awful all the time and so worn out by the hot flushes. They’re so regular and so intense. When they come on when I’m talking to people I don’t know what to do - my face literally starts dripping and I have to wipe it dry. I’m going to be taking soon and so nervous about sweating … About having to take tops on and off … About the sick and prickly feeling that goes along with the flushes. My bedroom stinks of sweat. I can’t wear make up. My body aches so much I don’t know how I can stand up to teach …
So I want to quit. There’s no point talking to a doctor - I have no faith or Trust in them. Nobody had told me exactly how much tamoxifen will help me. I’m just scared to stop … argh I hate it. I’ve had three flushes while writing this - off to go drench my hair and gave in cold water …
Sika, Rosebud - I completely get what your going through, its the same for me, my Onc used to deny there were any side effects with Tamoxifen but now has changed his tune and agrees that most of my problems are related to the tamoxifen. Recently I had a blood test to make sure that the side effects I’m suffering weren’t a symptom of somthing else the blood results proved that I’m still not through the menopause and all was ok with the bloods so it is the Tamoxifen that is causing all of my symptoms, finally they are agreeing with me. The problem is they wont agree that I should stop it, I absolutely hate it BUT they’ve told me I have too continue with it for the minimum of 5 years (2 years down and counting) the registrar I saw told me that I could take a weeks holiday on it but that in my opinion is not long enough I shall continue to take it but if It starts to get unbearable again then I’m going to allow myself a drug holiday of 2 months. As much as I hate taking it I do realise the benefits of taking the drug and in a way how lucky I am that I can take a hormonal that will prolong my life.
Hang on in there, the weather is changing this combined with the realisation that different brand types can directly affect the severity of the side effects ie: I’m ok on wockhardt and teva the hot flushes have for now calmed down and I’m not sweating so much.
Women do need support to stay on this drug, Gp’s and Oncs. need to explain in more depth to us how it works, and why it is necessary also they need to address side effects caused especially when they are severe. My Onc. explained for the first time what the 4/8 meant in relation to ER+ dx, she actually told me " basically it means that I am weakly oestrogen rich and therefore it would take slightly longer to come back and kill me than if I was an 8/8" I sat there stunned!!! There is no doubt in my mind that Tamoxifen does save lives, but it seems there is a price to pay with the horrible side effects.
I asked for % re cancer if I take or do not take Tamoxifen. Mine was a 3% difference and so I stopped taking it as I wasn’t tolerating it well.
I am very concerned about this drug being pushed.It is one of the highest earning drugs of all time. We are all told that adverse reactions are rare… We are testament to the fact that that is not true. Unfortunately the pharmaceutical industry is way too powerful and so often only has profit in mind over the truth. Dr’s are encouraged to prescribe certain drugs etc etc etc…So BEAWARE do as much research as you can and try to get your oncologist to level with you. We all have different cancers, triggers etc so I can not say for others.
Thanks for the replies. I wish I could find out my percentage … If it was only 3% I’d stop it. But part of the problem is I couldn’t ask my Onc even if I wanted to. I saw the Onc at the beginning of radiotherapy when he told me tamoxifen had no side effects, the Onc registrar spent 2 mind with me halfway through rads, then that’s it for 2 years. But I’ll call the BCC helpline.
From what i understand they are different. I was tested for whether the tumour was hormone receptor. I was given 8/8. I understand this figure to be how strongly the tumour tested for response to these hormones.
The doctor takes this number, patient age, history, and other things. This goes into a calculator which pops out a percentage. This was explained to me as: line up 100 women like me and X number will need the treatment. The doctors do not know which of the 100 women will be in the group of X , so we all get given it. In my case for chemo, 2 to 3 % was given. I accepted it, to make sure i did everything for it not to come back. I do not know the tamoxifen benefit percentage, except it is significant for me. I got the impression 30% was mentioned, but may be wrong.
Tamoxifen was a real break through treatment in preventing BC coming back. In all our choices, this should be part of the considerations and should not be overlooked as we try and cope with the side effects.
I have been offered, by my breast consultant, to start a 5-year course of Tamoxifen. I don’t have breast cancer (yet), but because of my family history I’m classified as ‘high-risk’. According to my consultant, new NICE recommendations is for high-risk women to do a 5-year Tamoxifen course. However I am slightly worried about its side effects, especially after reading all your comments on the forums.
Is there anyone out there who is taking Tamoxifen as a preventative measure?