When I was first diagnosed I read up a lot on the grey area regarding metabolisation of Tamoxifen and my surgeon agreed that we should go ahead with an oophrectomy to ensure that oestrogen was cut off at source asap. Also I could then take AIs with confidence. (Armidex showing improved risk reduction over Tamoxifen.)
Oopherectomies are unfashionable these days for early stage primary cancers - but they are a sure fire way of guaranteeing that younger pre-menopausal women with strongly ER+ cancers have the main oestrogen line severed early on in treatment.
Perhaps more pre-menopausal women should be proactive and discuss the option of an oopherectomy with their medical team?
I hate this kind of statistical reporting because it fails to address the deeply personal issue of prognosis and it only serves to trouble a lot of women unnecessarily. But it is worrying that some women don't complete their full 5 years.
It needs to be remembered that one of the primary reasons the BC survival rate has improved so much in the past twenty years is down to Tamoxifen. It IS a wonder drug.
Tina, it's an informative link, and as you know what a lot of us crave is information, so thanks for posting it. I don't think an apology is necessary but you're very thoughtful for offering one.
I do apologise to anyone who opened the link and found the information too detailed before I did mention the content, as Elinda quite rightly pointed out. I queried this with the moderators if it should be removed and they said with the additional comments made it is fine to stay. Tricky stuff! Tina x
The link which Tina has posted is straight to the point and is easier than lots of stats which are often more complicated to understand. All very scary though.
Thanks Tina for the link.
Woody Totally agree Tina's post is good but scared me too! It kind of puts me in high risk...
Oh well ladies, as far as I can see lets just "Live Life To The Full" each day...
love Teresa x
That link that Tina put on is the easiest to understand info I`ve read since my DX even though it`s scared me to death!
Found an article via this link which is food for thought for us er- pr+ 5 percenters. Trouble is i'm high grade!!
The Doctor who presented the study results was Yu-Fen Wang MD and if the link below doesn't work his presentation was called 'Survival Benefit for Tamoxifen in Estrogen Receptor Negative and Progesterone Receptor Positive Low-Grade Breast Cancer'. This study was presented on 6 May 2010.
Interesting thread here...but (and I'm probably telling you something you already know) my onc was very clear that Arimidex is not suitable for pre-menopausal women. My onc wants to put me on it, but is being very cautious until she has double-checked my status as she said it has long-term side effects if incorrectly used. If you are on Tamoxifen, then go through the mp, you can be transferred onto Arimidex.
Finty - thanks for a great piece of research which does help me and possibly others in making that decision to switch from tamoxifen. It looks to be a more significant difference than my Onc led me to believe although I see overall survival wasn't different which was interesting.
CM - there is a real lack of info on premenopausal women plus for those with lower or no ER+.
Tina - that link you posted needs to come with a health warning! I knew I was at high risk but seeing in black and white like that is scary. I shall swiftly blank it out of my mind!
take care all, Elinda x
I am er- but pr+ (highly) and HER2+ and have been on tamoxifen since May 2007. There are only about 5% of cases where the dx is er- pr+. My onc said I would get some benefit from tamoxifen but I wonder how much really.
My medical team cited this link at a Breast Cancer open day last year.
As Elinda mentioned the above link contains detailed information re risk/recurrence based on the
St Gallen International Consensus Panel.
Thanks finty, you're a goldmine of information.
My difficulty in processing any of these reports is that it doesn't deal with pre-menopausal women or women with HER2+ cancer. How relevant are the data in these pieces of research to ME? Well, may not particularly relevant at all. And for 4/8 ER+, is there much benefit at all in taking it, if it has such long-lasting side-effects?
More details of the research mentioned above here:
These were 6241 postmenopausal women, of which 84% were hormone positive.
This piece of research comparing the efficacy of Tamoxifen and Arimidex may be more to your liking:
The women in this study who took Tamoxifen for 5 years had a recurrence rate of 21.8% after 100 months (8 years). Those on Arimidex did better - 17%.
This is the thing, I'm terrified of stopping too, if I did stop then get secondaries I would never be able to forgive myself... But I really thought it was a much Higher percentage than this..
As you said the SE are awful, you name it I get it!
Know what you mean Theresa - what with hot flushes, joint pain, weight gain, headaches and constant tiredness, I've been thinking what about quality of life!
But on the otherhand I'd be terrified to stop because I might be one of those that benefits from it. I wish though the odds on it working were better.
Okay, Tried to put this one in perspective but have to say, it's knocked seven bells of cr..p out of ME!!!!
I've been taking this since August, the longest I have slept since then is 2 hours 15 minutes continuously, all this for just 6% chance higher.... I don't know if it's worth this!!!
Maybe I'm on a downer sleep deprivation does this, but really quite upset now.
Long-tern follow-up study of women re taking tamoxifen for 5 years
As requested by SM422 here is Breast Cancer Care’s reply to Tuesday’s news story regarding taking tamoxifen for 5 years.
Reading through your many supportive threads; many of you have already picked up on the important facts about taking hormonal therapies. One of the most important points is to realise that your breast cancer is completely individual to you as a person. Only a member of your breast care team will be able to discuss long-term outcomes about your particular form of breast cancer with you as they have full information about your individual case.
Generally speaking, we know that in combination with all the other treatments now offered for the treatment of breast cancer, scientists have shown that taking tamoxifen for the full 5 years gives the best chance of living without a recurrence. If you take it for just two years, your risk of a recurrence is higher. As several of you have said, this data is already quite old (1987-1997), treatment has improved and is now individually tailored to your particular tumour type. What’s also important is that this is a study of 3449 women who were over 50 years of age, and did not look at diagnosis in younger women.
Cancer Research UK has a good report which you can read here:-
This report also talks about the additional positive benefit of taking tamoxifen with regard to heart disease.
You are not alone in being frightened about breast cancer coming back in the future elsewhere in your body. Many people contact us at Breast Cancer Care concerned about breast cancer reoccurring and asking how they will know if this happens.
Often talking to someone about how you are feeling can help. Breast Cancer Care offers a range of services in which you can do this. To find out more, click on the link below:
and remember that if anyone wants to talk through their own concerns with us directly you can contact our helpline on 0808 800 6000.
I am not surprised by the information in the article that has been referred to.
After I had been dx,had a mastectomy and rads, I looked at my stats and after taking tamoxifen for 10 days decided to give it up. It would have reduced my risk of recurrence by a third which in my case was 2.4%.
That was back in Feb 2008, I am still going strong and have no regrets.
Deborah Orr in the Guardian today...
Seems many of us are feeling the same. Ive got to say, this has really set me back. I haven't slept really since, I feel like Im right back at the beginning again...
I have read the Journal of Clinical Oncology article -like everyone worried about those recurrence stats. Can't say I understood it all -so please wait for a response from BCC and don't totally take my word for it. However seems to say that recurrence rates for those taking tamoxifen for 5 years was 29.8%. This included 12% local recurrence, about 14% distant and 3% cancer in the other breast. They seemed to count in their higher stats women who had died from any cause. I'm not totally sure of these figures -so if anyone else has read it I'd be glad of their input.
Other things to be aware of include that the women on this trial had not necessarily been tested for ER status before going on tamoxifen - so it may not have helped a proportion of them anyway. The reason that the trial looked at women over 50 was the thought that most of them would have been ER positive - but they don't know how many. The trial started in 1987 - so very different times regarding BC testing and treatment. The trial also notes that 200 women who were on the 5 year arm of the trial stopped taking tamoxifen before the 5 years were up -but they were still counted in the follow up data.
Another positive thing about tamoxifen was that the women who took it for 5 years had far fewer instances of cardio-vascular disease than those who took it for two years, or didn't take it. Seems that tamoxifen provides some protection for women generally against CV issues - especially strongly seen in women aged 50-59.
Lastly the stats for endometrial cancer were very low -abour 1.5%, and slightly lower (don't know why) for women taking tamoxifen for 5 years than 2 years.
Hope this helps a bit...
I found this article in Science Daily which gives a good analysis of the tamoxifen v aromatase inhibitor research. It also gives percentages of lower recurrance rates. Obviously this only applies to postmenopausal women though.
I agree with cornish girl when she says we have to put things into perspective but I would like to know if I'm one of the 40% who will not benefit from taking Tamoxifen.
If as I hope I am one of the people who benefit from the drug I will also be very afraid when the hormone therapy ends. I am to have two years on Tamoxifen and then change to an inhibitor and I wonder why we are only given the drugs for 5 years.
I see my onc in two weeks and have lots of questions for him.
I was pre-men at DX but post-men shortly after and was on Tamoxifen for 2.5yrs before switching to exemestane (Aromasin) about 6mths ago.
It is now thought after clinical trials that 2-3yrs of Tamox followed by 2-3yrs of an AI is more beneficial than 5 yrs of Tamox alone.
This was the IES study .
Personaly for me i will be very scared when i finish hormone therapy as il then have no protection!
Re the cost and big pharmaceutical coining it in ,Tamox costs 10p per tab so £3.00 per box of 30, AI are quite expensive as are relitively new, Aromasin in comparison costs £115 per box of 30.
I'm pre-men but my onc is convinced that chemo will kick me into menopause permanently so the noises he made were that I'd do Tamoxifen for a couple of years and then onto an AI.
But that 40% figure still bothers me greatly, and I'm going to have to have a loooong conversation with him before I say yea or nay to these drugs.
I was pre-menopausal when I started tamoxifen last August, but after having my ovaries removed earlier this year, there was some discussion about from the gynae onc about moving onto an AI as I am now obviously menopausal. However my breast onc said no. She said the SE of AI on the bones outweighed any advantage and as I was at higher risk of osteoporosis because of the early menopause I should stick with the tamoxifen as it porvides some protection for your bones.
The plan for me was to stay on tamoxifen for 5 yrs, then switch to an AI for another 2 or 3 years.
What I feel about any statistics regarding cancer treatments is that you have to believe that you will fall into the 50% it does work for.
Here's a more up-to-date article on the CYP2D6 test on Susan Love's site:
That test, CYP2D6, I did last year here in Germany. Since then, research has shown that it is not worth doing, since even people who are found to be poor metabolizers on it profit from Tamoxifen. I imagine you can confirm that from Google.
I am 64 and I take Tamoxifen. I took it first, then Arimidex, then I got trigger fingers/thumbs and the beginnings of carpal tunnel and went back to Tamoxifen. The problems have gone now. About two years ago I heard a talk comparing Tamoxifen and aromatase inhibitors and the difference was about 2%, but I can't remember 2% of what. At that time the speaker thought that people who metabolise Tamoxifen well do even better than those on aromatase inhibitors, but I suppose if the test is not valid, then that may not be true. Nevertheless, there are thought to be a lot of women in the USA in particular who take anti-depressants which weaken the effect of Tamoxifen and these skew the figures.
I can't see any reason not to try Femara and see how it goes, as the effects vary from person to person. You can always go back to Tamoxifen. But the pharmaceutical companies are really selling the aromatase inhibitors hard at the moment - here they are hugely more expensive - so I wouldn't believe everything said about them.
That's interesting Tina - so not available here in the Uk then.
I've been on tamoxifen for 18 months but my blood tests are showing me as post menopausal. My surgeon wanted to switch me to femara but my Onc said because of my joint pain that I should stay on tamoxifen for 5 years. He said there was little difference in outcome.
I'm really not to sure now and would like to know the percentage difference between being on an aromatase inhibitor versus staying on tamoxifen. Does anyone know?
Elinda, a lady from our February thread did the cyp2d6 metaboliser test, her onc sent the samples to the states, it was expensive but she felt it was worth knowing. It was (cluck/Claire). X
I think the main thing to remember is that none of the women were under 50 .
These days surely all those women bar very few still not through the menopause would have been put on an aromatase inhibitor not tamoxifen
However , these I don´t think were readily available then , so it was tamoxifen or nothing .
I know my aunt who developed BC at age 69 was initially put onto tamoxifen for five years this was early to mid nineties .
When the cancer returned at age 80 , she was then put on arimidex however , she had delayed returning to the doctor the second time round so it did´nt have much chance of working .
I´m sure that todays results are better because women are put onto one or other of the treatments depending on age , plus receptor or not etc .
I suppose at the end of the day it comes down to "suck it and see !", but I do agree some of the s/e ´s are horrendous .
I found this article about tamoxifen and new research conducted by the Mayo Clinic (the article isn't a research one but refers to the research).
It sounds like a simple test but I suspect its very expensive.http://www.healthcentral.com/breast-cancer/c/78/54393/tamoxifen-work/
While I agree that no treatment is 100% effective, I think the problem is, that quite often, patients with oestrogen receptive stage 4 metastatic cancer, are not given the option of treatment other than endocrine therapy. Unfortunately some doctors take the view that as metastatic cancer is incurable, it is pointless to put a patient through surgery to remove the primary, or give the patient chemotherapy, so they just put the patient on endocrine therapy - reserving chemo for when endocrine therapy finally fails. This means that patients feel as though they really are 'up the creek without a paddle' when they discover that endocrine therapy might only be effective in 50% of cases.
Also while I agree that it's important to get things into perspective, I don't think you can do that by saying that other treatments aren't perfect either. The fact is there is a huge debate within the medical profession about whether chemo is better than endocrine therapy, but that is all academic if a patient isn't given the choice.
Thanks lemongrove - an interesting read. I now understand why oestrogen is sometimes given to women with er+ve cancers that have become desensitised. Also very interesting that various growth factors are considered a prime cause of endocrine therapy resistance.
Tina - thanks, will check it out.
Finty, Wikipedia has a page on cyp2d6, with a list of selected inducted, inhibitors & substrates of cyp2d6. Fingers crossed the femara does it's job.
well, i agree with roadrunner to put this study into perspective this study shows that taking Tamoxifen for the full 5 yrs will boost a womens chances of surviving breast cancer,i think we need to remember that no breast cancer treatments,Chemo,Rads or Hormone Therapy is 100% effective, infact chemo if very often less effective then hormone therapy for er/pr+ cancers, in my case Chemo only gave me an added 5% benefit but even though the SEs were horrendous i still wouldnt have considerd not taking it, the "any extra % may make all the difference.
If the recurrence rate on Tamox is 40% after taking Tamox for the full 5yrs that means that we have a 60% chance of non recurrence , statistics are statistics but they dont tell us what will happen to us personaly as individuals.
Breast cancer survival rates have improved considerably over the last 30 yrs and have also improved since this study was taken.
If peeps google the phrase endocrine therapy and resistance, you will find that this doesn't just apply to Tamoxifen. The statistics vary, but from what I can gather, up to 50% of those taking endocrine therapy (including Tamoxifen and Letrozole), do not gain any benefit from it. Scientists are not sure why this is, but seem to think that in some instances people have a genetic resistance, and in other cases, cancer cells learn to do without oestrogen.
For those who wish to know more about this issue the link below, provides a very thorough account.
I have passed on your request to our nursing team, in the meantime if you would like to talk this issue through our helpliners are here until 5pm on 0808 800 6000 (weekdays 9-5 and Sat 9-2)
Tina do you know if there is anything similar for AI's? I've just started on Femara and have no se's at all - in fact my joint pain is getting better! So at the back of my mind is whether it is working if there aren't any se's.
My onc explained that there are different levels of tamoxifen metabolisers, poor, intermediate and extensive. There is a genotyping test (CYP2D6) that can show individual uptake levels of tamoxifen. There are several articles on Medscape Today on the subject.
Most women of that age group are unlikely these days to be on tamoxifen for 5 years and/or not to have an aromatase inhibitor afterwards (providing they are menopausal).
It is shame that we can't access the full article because what we don't know is how much treatment they have had except surgery.
For some women, taking tamoxifen may be the only option if they can't tolerate aromatase inhibitors or have other health reasons why they can't take it. So it's good to know that there are benefits not only in terms of reducing the risk of recurrance but for the cardiovascular system as well.
The figures are a little confusing - they quote 1103 recurrences from a cohort of 3449, which would be roughly 32% across both group, not 40%, and presumably less than 32% in the 5 year group. Unless there is a group that had recurrences before the cohort was split in to 2 and 5 year arms, but they give no figures, so it is impossible to tell.
Also, my understanding is that the maximum benefit from Tam is for pre-menopausal women, and as this group were all 50 plus, I imagine only a few fall into that category.
I've had a quick squint through it, and there doesn't seem to be any differentiation between pre- and post-menopausal women and no comment on HER2+ cancers also treated with Herceptin, but the 40% recurrence rate is screaming very loudly at me.
I know it's based on women who were treated 14 - 24 years ago, so I'd be interested to know what OTHER improvements there have been in treatment that would affect that very scary 40% figure.
What other treatments did these women have? Lumpectomy? Mastectomy? Radiotherapy? Chemotherapy? Treatment for breast cancer isn't just one single drug so I'd be very interested in seeing what else they received. I like to kid myself that the 40% include women who had larger tumours, who had HER2+ tumours that weren't treated with Herceptin, who didn't receive radiotherapy after surgery, who didn't receive chemotherapy for Grade 3 tumours...
Hi the women who took part in this study were aged between 50 to 81
Here is a link to the actual study.
Best wishes Melxx
Perhaps someone from BCC can clarify the general reporting.
I also read the article and was shocked at the reoccurence rate!
I am due to start taking it next week, and now wondering whether it gives me much more of a fighting chance for the potential se's!
Not seeing onc until end of rads in May....so not much opportunity to ask!
Any further insight would be appreciated
just to comment on what AlexaMay said about the profits made by the
pharmaceutical companies, I`m into my second year of Tamoxifen after initially starting off on Letrozole, which didn`t suit me at all.
I`m now living in Spain so if I run out of Tamoxifen between visits home for regular check-ups, I buy them over the counter at our local
pharmacy, no questions asked. These cost just over 6euros whilst the Letrozole would have cost me 169euros, so I really don`t think it`s an expensive drug plus the last couple of prescriptions from my GP have been generic(unbranded) which will be even cheaper.
Incidentally, I don`t speak much Spanish but I know enough to read that there are a lot less ingredients in the Spanish version which explains why the flushes & nausea are less.
/Best wishes to all and like someone else said, treatment has come on leaps & bounds since that study began, love Mags xx
Wonder if anyone here is seeing their onc soon, and could ask about this study...if these stats are correct, and report back here. Im not due to see mine for another month.
I've been on tamoxifen for nearly 2 years and about 6 months ago decided (unilaterally) to half my dose because of the side effects. I also wonder if it's worth taking it at all given the stats. No one understands how depressing these SE's are unless they've experienced them and for many the prospect of 5 years and then still a big chance of recurrence is even more depressing!
If you google tamoxifen you'll also see that like many pharmaceutical compounds it has its critics. One of the things I ask myself is who benefits from the massive numbers of women taking tamoxifen? -I'll bet big pharma is coining it in!