Anyone doing ten years instead of moving onto Arimidex after two? Not sure what is better a total of 5 years with mix of both drugs or remaining for longer on Tamoxifen. Would be interested to hear the opinions of other oncologists.
Yes, my oncologist at Royal Marsden has said I will be on it for 10 years. I was diagnosed in 2008 aged 44yrs and was perimenopausal . I have taken Tamoxifen for 4+ years now and was really looking forward to the end. However, I have been told that for those with lymph node involvement and high ER levels (mine 8/8 ) its been proven to be of huge advantage.
Yes, I questioned my consultant after 5 years on tamoxifen in January. There has been a study (ATLAS) that shows 10 years on tamoxifen is better than 5 provided you’re tolerating it well. Arimidex wasn’t an option for me though as im not menopausal. The NICE recommendations for prescribing tamoxifen are due to be updated in 2014 to reflect this.
Interesting, I am post menopausal and probably was when I started taking it or at least on the borderline. Therefore not sure how effective it will be for me but my onc seems to think its a good idea.
hi , I am coming back to the forum after many years. I have been on tamoxifen for 5 years and i was looking forward to my appointment this year to stop it at last. My onc. explained to me about the Atlas research and in my case due to nodes invol. etc she reccomended to extend it for 10 years. I was hoping to try for a baby…
I’m not sure if I will go for 10 years because they found polyps in the uterus and a cyst in the ovary and the gynae said it’s because the tamoxifen. She said while doing the examination that she’d seen these changes in women on tamoxifen , theres’s thickening of the walls of the uterus. The gynae and the onc said that the benefits of tamoxifen outweigh the risks. I feel I am left to choose bad from worse. I am feeling so frustrated and I cannot find a way out of this.
Sorry for the long message, I didn’t realize how i was feeling till I started writing here.
thank you, I hope you can give advice/ other points of view.
hi , I am coming back to the forum after many years. I have been on tamoxifen for 5 years and i was looking forward to my appointment this year to stop it at last. My onc. explained to me a bout the Atlas research and in my case due to nodes invol. etc it’s reccomended to extend it for 10 years. I was hoping to try for a baby…
I’m not sure if I will go for 10 years because they found polyps in the uterus and a cyst and the gynae said it’s because the tamoxifen. She said while doing the examination that she’d seen this changes in women on tamoxifen , theres’s thickening of the walls of the uterus. The gynae and the onc said that the benefits of tamoxifen outweigh the risks. I feel I am left to choose bad from worse. I am feeling so frustrated and I cannot find a way out of this.
Sorry for the long message, I didn’t realize how i was feeling till I started writing here.
thank you, I hope you can give advice/ other points of view.
Hi Hopes I hear you and totally agree with your thoughts about it. Really don’t want to be on this drug or any other - what to do??? It’s a risk to stay on out and a risk to be off it, admittedly different risks but still life threatening. I hope others come into this thread to offer their thoughts.
Hopes i know of other women who had a break from tamox to have a baby and then went back on it… I was offered this option myself but got a new primary before i had the chance to try.
i have completed 5 years of tamox although it took 7 years to actually compltete it due to a new TNBC , and a TNBC recurrence so couldnt take tamox whilst having chemo. I had my ovaries out due to carrying a brca2 gene fault so i started letrozole about 6 months ago and onc has suggested staying on it for 5 years… Its benefits are superior to tamoxifen but only for post meno women.
when i asked about tamoxifen he said it would only be beneficial to women who were still pre menopausal and had high grade or node involvement, otherwise if post meno they eould have more benefit from letrozole and if lower risk for recurrence then the risks of staying on tamox out weighed the benefits but in higher risk women it was the opposite.
i guess they will all have their own take on it.
lulu
Thanks Lulu for that info. It’s frustrating when oncs all have different opinions. For me makes me not place much faith in their judgements or knowledge! Can I ask TNBC is that triple neg? If so I though chemo was not offered for that?
Hi carrie
tnbc is triple neg… It responds very well to chemo… This is the ONLY option for tnbc as it doesnt respond to hormone therapy or herceptin as these receptors dont exist and they are what give triple neg its name, its neg for Er, Pr and Her2.
after re-reading my post i wonder if what you meant to write was that you didnt think tnbc responded to hormone therapy rather than chemo? My first cancer was strongly Er positive and thats why i was on tamoxifen in the first place… My onc thinks its beneficial for me to continue with hormone therapy to prevent recurrence but also to reduce the risk of a new hormone positive primary.
lulu x
Btw lower risk means older age of onset (postmenopausal), node negative, grade 1 or 2, erpos. Her2 neg… So anything out with this could be classed as higher risk… Most oncs dont make the treatment decision alone its normally a joint decision made at a multidisciplinary meeting and its based on your own circumstances, such as your fitness, co-existing medical conditions as well as your diagnosis and your age.
Lxx
Me too back after some years. Also due to come off Tamoxifen in November, but as I was 42 when diagnosed (now 48), I feel too scared to come off it if a reputable study says that 10 years is better. Grrrrr. I am also wondering about Zoladex as a friend (few years younger) has had her Zoladex extended from 5 years to 7 years. Guess I’ll go that way too. It must be so difficult if you are trying for a baby and have to make these decisions 
Sorry to butt in but how do you know what your ER levels are? I have been on Tamoxifen since November 2011 and had reasonably steady periods throughout. However, it had been 7 weeks 6 days since my last period started yesterday and it is just been like a brown gunk - does this mean I may be at the end of my periods now
Any info would help as I think i have been living in cuckoo land since it all began x
Just for the record in case it helps anyone else; I was diagnised at 43, so most definitely pre-men; Grade 2 60mm tumour but no lymph spread thank goodness. Had mx, chemo, rads then Tamox for 5 years. Have just had 5 yr point check by Onc and, without me asking, he has extended this to 10 years due to proof from ATLAS study. I asked if there was any way of knowing if or when I’ll go through the natural menopause and he said “we could do a blood test but due to you taking Tamox the results will be all over the place”.
Lots of love to all xx
Hi Gilly did you get free checkup at dentist as well as I had to pay ? Xxx
I’m being moved towards 10 years too.
I hit five in Nov. 12 and annually since then have had bloods taken to advise of continuation. The report came out pretty much just before my review. At 51 my ovaries are putting on a brave show and I am still not fully menopausal although haven’t had a period in about 5 years.
My onc. said stick with the tomoxifen…the side effects are less severe than what I would be moved to. The benefits outweigh the risks…really hate the hot nights, but hate/ fear cancer a lot more…
If what I read was true, Tamoxifen was synthesised down the road from where I live, I believe in 1962, it’s the same age as me and I am eternally grateful it came along when I did. Women before really didn’t have a lot going for them… Bring on the research!
My thoughts and wishes go out to all of you
Sarah