In the news today they are saying that so many women stop tamox early due to side effects. The study shows that the cancer comes back in 46% of people who stop tamox early, but “only” comes back in 40% who take it for the full 5 years.
This has made me feel even more scared of it coming back!
40% !! thats a lot isnt it? 5 years of tamox and i thought the future would look fairly good but still for 4 in 10 it returns? Seems a lot to me. What do you think?
But … as with all things reported in the media does the report say which group of women was studied? What type and grade of cancer, what initial treatment was etc etc. having read some of the articles in the Guardian on bad Science “Each week, Ben Goldacre skewers the enemies of reason.” I’ve become very sceptical about any so called scientific studies. It doesn’t mean the original study is faulty just the way the reporter has rewritten it.
In other words Don’t Panic!
This was a study on women diagnosed between 1987 and 1997. So I don’t think we can compare it with expectations today. Treatments have improved a lot since then. What we can take from it is that it is best to take tamoxifen for the full five years and not give up due to the side effects. This is quite timely for me as my hot flushes have gone haywire again, 3 1/2 yrs down the line, and so this study will help my resolve to see the five years out.
bbc.co.uk/news/health-12805655 here is the link for those who want to read. Not sure this generalised reporting is helpful?
I’ve just read that report, and am horrified. Even 46% is a massive number, and in all honesty, I dont think the treatment has changed that much. Mx and chemo…its the same.
I feel reallly gutted now, I absolutely didn’t realise the reoccurance rate was so high.
I was told by my BCN when I started taking tamoxifen that it only works in approximately 50% of women. I remember being really shocked as I naively thought it worked for everyone.
…but Tamoxifen isn’t the only drug available for this type of cancer. When I see my oncologist next month I’m going to argue this, B
Only works in 50% of women.I can’t believe it. I have just read all your posts to my husband and we are both in shock.I have only been on Tamoxifen since December and having quite severe side effects. So much so that I am in two minds as to whether to continue taking it. Reading about this is making me wonder even more as to why the heck I should continue.
I am really gutted too
I found this very frightening too. I am due my second dose of fec and dreading it. The 6 sessions are to be followed by 5 years on Tamoxifen. I was already struggling with the chemo and after reading this and the 50% quoted success rate I’m not sure that there is any point in my carrying on…
I’m feeling pretty low today so maybe this mood will pass but it’s all feeling rather futile at the moment.
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!
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.
Hi all,
just to comment on what AlexaMay said about the profits made by the
pharmaceutical companies, Im into my second year of Tamoxifen after initially starting off on Letrozole, which didnt suit me at all.
Im 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 dont think its an expensive drug plus the last couple of prescriptions from my GP have been generic(unbranded) which will be even cheaper. Incidentally, I dont 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
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
SJ xx
Hi the women who took part in this study were aged between 50 to 81
Here is a link to the actual study.
jco.ascopubs.org/content/early/2011/03/16/JCO.2010.32.2933.abstract?sid=
Best wishes Melxx
Has anything been done to look into it for us younger ones?
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…
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.
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.
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.
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.
finty xx