I know this is probably an academic question and an ill-posed one at that.
I have been told that being ER+ is one of the big things in my favour against my cancer. I am 41 and have been diagnosed with a localised and yet quite advanced cancer. I am finding it hard to consider that I might not live a long life at all if some of the cells have gone astray around my body. I know tamoxifen can starve them of oestrogen so that the cancer finds it harder to grow but does that just delay the process by a few years or is there evidence that it can really put those cells out of action forever ?
Hi Barbwill. Your question is perfectly fine, and makes sense to me.
My surgeon and my oncologist both said it reduces the risk of recurrence quite substantially, and my onc. was very positive about the benefits.
Someone will be along soon who knows the science and the figures.
Hope you find the info you need soon.
All good wishes.
yourlife.usatoday.com/health/medical/breastcancer/story/2011/07/Tamoxifen-wards-off-breast-cancers-return-for-more-than-a-decade/49716324/1
This article is very clear about the benefits of tamoxifen. Hope it helps.
The question makes great sense to me. The article is also encouraging, as the idea that it carries on working after the 5 years is re-assuring. There are also other measures they can take to reduce the effect of oestrogen, or its production.
I will soon be getting to the end of 5 years tamoxifen followed by 2 years letrozole, so will raise this question with my onc at my next appointment. (The notion of not taking any pills any more is rather scary, to say the least!)
Sarah
oh I hate articals where you cannot get at the statistics behind them.
For instance if this is looking at 10 and 15 year survival rates they are looking at cancers that were found a long time ago–so did the test for ER+ back then? or do these survival rates include all types of cancer, only some of which were ER+.
Also isnt it only recently they have started testing for PR+? I am sure that if you have a high PR score then tomaxifen works better, cannot remember where i got that from.
Interesting as well that they included the figures from people who stopped taking tomaxifen, wonder what the results would be if they had excluded them, a lot better i am sure.
Hi
I have the same issue as you - adjusting to the fact I may not live the long life I was hoping for. I’m 39, so the same age too.
My understanding is that, statistically, Tamoxifen could well give me an extra 5 years of life, and possibly 10 years. I think it’s very difficult for younger people to place much trust in the stats available, because they are based mostly on older people who perhaps don’t have a natural life-span of another 30/40/50 years.
I questioned my onc on this, and he said that it’s possible for cancer cells to starve to death, but it’s also possible for them to lie dormant for 10 or 20 years.
I’m just trying to think of myself as safe for the next 5 and then I’ll take it (mentally!) from there. Tough, I know. xxx Jane
Cat, thank you for the article, very reassuring.
For all those of yo who plan to ask your oncologist, I’d really appreciate it if you could come back to the thread and report what they said.
Oldandlumpy, when I asked my onc if I was PR+ he said it’s a very academic question so I guess that that means that in his opinion it’s not proven yet whether that makes a real difference ? I hope it does because I am strongly ER+ and PR+.
Jane72, I guess that the toddler in your avatar is your own … I have 3 year old twins and they are the main reason why I feel so terrible at the possibility of disappearing in the next few years. It’s so difficult isn’t it.
Dear Bardwill
I don’t read stats as they usually get me depressed. However, I know how you feel with regards to being diagnosed with localised advanced breast cancer. I was misdiagnosed by four years having been refused further investigation by my GP on three occasions. The angry within me was off the richter scale. Time is a great healer. I’m doing really well and now into my 6th year with no recurrence. I know the prognosis I was given at the time was not good but I try not to think about it and it does get easier to ignore as time goes on. My cancer was ER+, PR+, HER2-, localised advanced lobular at Stage 3b when diagnosed.
Wishing you all well.
Jeannie
Barb, yes - we have a 3-year-old and a nearly 10 month old.
Noone seems interested in researching survival beyond 10 years after diagnosis, and sometimes I feel like screaming at my onc that 10 years are not enough when my kids are so young! Other days, I can get my head around dying in 5-year increments, working out how the family will cope in my absence. Of course, there’s the chance I won’t reach the first 5-year milestone.
I have had a recurrence, by the way, 5.5yrs down the line, so I guess I have ample reason to be scared. But I know that right now, I’m very, very lucky to be well.
How far into treatment are you? The fear does get less with time. I’d almost forgotten I ever had cancer by the time mine reared its ugly head again, and I consider that a good thing. xxx
they are research survival beyond 10 years but that things have only changed dramatically enough in the last 10 years to be significant… there are 15 year survivals on things like cancer lifemath website.
generally speaking the survival beyond 10 years is very similar to that at 10 years… it doesnt just hit a peak and then drop off the scale.
risk of recurrence and survival much depends on size, histological type, grade and number of nodes involved… the treatment they give is to help improve overall survival as well as cancer free survival by reducing your risk of disease progression.
nowadays the average survival is about 90% of breast cancer patients surviving 10 years or more compared to 30 years when only 45% survived to 5 years… the treatments have improved so much and they are continuing to discover new treatment all the time.
love Lulu x
Hello Barbwill. Unfortunately there is no cure for cancer as yet, so no Tamoxifen does not cure cancer.
If you have oestrogen receptive primary cancer, and your tumour has been removed, Tamoxifen will help guard against a recurrence, or progression should there be any micro-metastases floating around.
I think what’s particularly interesting about the new data on tamoxifen is that it seems to have an effect for years after stopping the medication. I’d be very interested to know why that it is although I guess they probably don’t know.
I’ve read this report from Breast Cancer Org (US) which quotes from the editorial attached to the Lancet article (which you can’t access unless you subscribe).
breastcancer.org/treatment/hormonal/new_research/20110728.jsp
It states that info from the editorial says:
'That the curves didn’t converge suggested true prevention that “potentially cures many patients”
I’d like to see the full context of the above quote but perhaps it’s a bit more positive than we might have thought. Elinda x
If it helps, I am PR+ E+ 8/8 and only had WLE and rads because stage 1, grade 1 not in nodes. I was flapping about not having chemo - in my mind my treatment was only localised so if I had had any rogue cells floating around or it was in the other side or something, that wasn’t being treated.
Two different surgeons and my onc all told me that tamoxifen is as good at preventing recurrence as chemo in hormone positive bc and that I should view tamoxifen as as much of a safety net. They also said that while people currently take tamoxifen for five years, that there is ongoing research into the benefits of taking it for longer so that, by the time I get to five years (I’m only five months in) they may well extend how long I take it for.
I for one am delighted to be taking it and its good to think it may go on having an effect even afterwards xx
I must confess I used to think tamoxifen was a bit of an afterthought, I have had chemo, surgery, rads and herceptin and am now on tamox; if I had to rank them (in terms of effectiveness, necessity of having it etc) I probably would have put tamox last. I think because it is just a little pill it seems so minor compared to other more invasive treatments! However last time I saw the onc he said something I thought was fascinating. That if he could only give me one treatment it would be tamox; over and above chemo. I always thought chemo was the biggie, but he said the tamox actually gives you more protection. And I agree it is very good to think its protection can even last beyond five years.
It is horrendous to get BC in the first place and of course I wish none of us had to go through this. but in some respects I do feel lucky that there are so many good treatments available for BC - I feel desperately sorry for those with rarer cancers and other illneses for which there are not as many treatments.
To be quite honest I must be a bit of an ostrich because when initially diagnosed I had a non agressive cancer with excellant survival rates, but when they also found some invasive foci I never thought to ask how that changed my chances.
so after reading this thread, i was a nuaghty girl and did some googling. There is information around comparing re-occurance with and without tomazifen, but what i would realy like to see is how in 5/10 years do my chances of having cancer again compare to someone my age who has never had cancer in the first place?
does anyone know that answer?? I have never realy sat down with the onc team and asked this sort of thing because my path report was not around in the early days. I just assumed when they outlined the treatment then that would be it-all gone away and cured.
Hi OAL,
I don’t think there is one answer, it depends what you had stage/grade, what it responds to, whether or not in lymph as to what your stats would be. I know I was given stats but only because I asked. I believe that there are sites that will allow you to put in your information and get a set of averages for people in that situation but sometimes the data are quite old and so sound worse than they would be for us all with the treatment we are having now.
It might be safer to ask your onc team if this is something you wish to know x
I am also on Tamoxifen,and nobody can tell you it will stop the cancer from coming back. I guess it is the luck of the draw. I do find I have some terrible night sweats,and some nights have to change my nightwear 2. I purchased a Chillow pillow which does help my head stay cooler. I try to stay possitive,but some days it isn’t easy.
xx
Interesting stuff - I saw my oncologist today, and he also said that although all the six months of chemo, and the radiotherapy are valuable tools and worth doing, the one thing that will really make a difference, and must not be missed to improve survival chances is the hormone therapy! I wil be starting that soon, with rads.
And then there’s the isue of whether to stop Tamoxifen eary in order to try for children which I know my oncologist suggested for me and I know other young ladies on the forum are considering. Doesn’t sound like a good idea at all according to that article. I wonder if you can come off it, have children and then go back on it…
Obviously this is assuming we are still fertile after chemo…
Thank you for all your comments, I feel much much better now to know what a potent weapon tamoxifen is against cancer. I am ER 8/8, PR 7/8 and HER-, so far only primary cancer. I was diagnosed in Feb and have gone through chemo and then surgery. I chose a bilat mx because I am BRCA2+ and for the same reason I am going to have my ovaries and tubes out soon. I am told that thanks to the fact that I will be post-menopausal once I remove the ovaries, I will be able to still have hormonal therapy after the first 5 years on tamoxifen by moving to another drug at that point.
Jeannie, thank you for your very warm comment. I hope that I will feel less worried as time goes by, as you suggest. It’s been only 6 months since the dx and still have rads to come, so early days. Mine is ductal but as far as I can work out I am 3a so not far off you. Fantastic to hear you’ve done 6 years without recurrence, I am very happy for you.