Hi all
recently diagnosed, age 39, er positive and HER2 negative- awaiting pathology results for staging.
I have been reading the SOFT and TEXT trials and it sounds as though there is a small benefit to ovarian suppression and exemastane (apologies if that is spelt wrong) over tamoxifen.
can anyone advise if they were offered this option/or requested etc as, from reading forums, it still sounds as though tamoxifen alone is what most pre-menopausal women are given. I’ve yet to speak to an Oncologist so am not sure if this is the case or why. Curious to hear people’s thoughts/experiences?
thanks in advance
Hi
I was/am older than you at diagnosis , I was 51 and am now 56. At diagnosis I had a period and then started Chemo and have never had one since. My oncologist expected me to be towards the menopausal/post menopausal range . I won’t bore you with all the blood tests I have had since then , but my last one, a couple of weeks ago, which means I stay on Tamoxifen for a further 5 years , was 13, which is just outside of the child bearing range of 1-10, and way below the menopausal one of 25.
From my conversations over the last 5 years , if you are in the 1-10 range you will be offered Tamoxifen and either an ovary suppressant , or ovary removal. Over the10 mark Tamoxifen only , the expectation being that within the normal 5 years of Tamoxifen you will become menopausal and then be switched to one of the AI’s such as Letrozole.
What you won’t get is the ovary suppression/removal instead of Tamoxifen , it is alongside it.
Obviously within all of this are peoples own personal issues and diagnosis , and it is not just based on age but also other factors, and I am not a medical professional!
Hope this helps
Jo x
I was 44 when diagnosed and I was offered either tamoxifen or zoladex/exemestane. I had a really good chat through with my oncologist that first meeting and the overriding question for me was 'which is better?'.
She said that the research shows that although both are the same for mortality rates, the zoladex/exemestane has a lower incidence of re-occurence. So that is what I went for.
As I was mid-40s, I figured I would only need to go though one menopause as chemo then ovarian suppression for 5 years should prevent my ovaries staging a come-back. I am very much over the worst of it, but the first few months of menopause were pretty intense, especially as this was at the same time as chemo. I didn't mind though as I was happy to get everyone over and done with.
If, like me, you really don't want to go through the menopause twice, then you can opt to have your ovaries removed (though they won't do this straight away).
Hi Hel39 I'm sorry about your diagnosis, but you're in the right place to find others going through the same thing.
I think different patients are offered slightly different combinations of drugs or treatments depending on lots of factors. I have ER+ PR+ HER- Invasive Lobular Cancer and I'm not menapausal. I'm 47 years old and was diagnosed back in May. I have a chronic illness that causes me fatigue and joint pain so these things have been factored into my Oncologists decisions about how I start my hormone treatment, but their end game is the same. The hormone objective they want for me is ultimately to be post menapausal and taking an Aromatase Inhibitor like Letrazole. They believe that will be the most effective combination of things to tackle my particular cancer But they're taking me there gradually over a few months to ease me in gently, and hopefully make the drug side effects with menopause symptoms as bearable as possible. So...
4 weeks ago I started Tamoxifen.
Yesterday I started Zoladex implants to turn off my ovaries, alongside the Tamoxifen
All being well, in 3 months time i will be pharmaceutically menapaused and stable enough regarding symptoms that they will stop my Tamoxifen and change me over to Letrazole. The Zoladex will continue alongside it for 2 years, by which time my ovaries ought to have given up trying and I'll be post-menapausal without the need for the ovarian suppressing effects of Zoladex.
Then the Letrazole will continue on its own for 5-10 years. That's the plan.
So I'm combining Tamoxifen with the ovarian suppression for a few months, rather than having one or the other. Your Oncologist will explain to you what he/she thinks are the most effective hormone treatment options for tackling your particular cancer. If there's more than one option, you don't have to decide there and then. You could always ask for all the information about your options and go away to think about it for a few days.
Good luck with your treatment.
Thank you for the reply. Did they explain how the mortality rate was the same when the recurrence rate was lower….does it cause another type of mortality issue?
I will ask the Oncologist when I finally get to meet one but everything is just taking so long and the fact I am under 40 is really scaring me as all the stats are saying this is bad in term of recurrence.
many thanks
They didn't explain mortality vs reoccurrence but I took it to mean that you are not more likely to die (sorry for the crude word) in the future on either drug route, but you are less likely to have the cancer come back on ovary suppression/ AI. From that, I assumed that if your cancer comes back on tamoxifen, it is usually successfully treated, hence mortality rates the same as ovary suppression.
I wanted to do everything possible to prevent me getting this again in the future, which is why I chose what I did.
Interestingly, just before I was prescribed the zoladex, they had another conversation on whether I wanted to take tamoxifen for a few years and then switch, but the same stats were quoted in terms of which is better for long term outcomes so I stuck to what we originally agreed..
One thing to weigh up is lack of oestrogen for such a long time. I wasn't far off a 'normal' menopause age and I also keep fit with activities that keep my bones and heart strong and I have a job that keep my brain very active. So for me I felt like I was doing other things to counteract the lack of oestrogen.
I al also on zoledronic acid for 3 years, which helps keeps my bones strong as well as helping to prevent caner coming back in your bones.
There is a lot to weigh up for your own personal situation and age.
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