Hi Paula’s, I think Chick has given you some very informed and balanced advice. I do feel, though, that this is a discussion which needs to be happening with your Onco. I’ve been on Letrozole for almost three years and am managing very well. As, Chick says, it’s very different from person to person, and until you try it you really won’t know. At the end of the day, it’s a very personal choice. Good luck with whatever you decide. X
Sorry to hear you have had such a rough time. Hope you are feeling a bit better. Have you found that things have improved since stopping Tamoxifen? I remember having a dilemma about taking Anastrazole. I eventually gave it a go and have been on it now for just over 2 years. I have had some side effects but nothing that I have not been able to sort out so I will continue to take for now.
Hysterectomy does not always include ovary removal. However, even if you have had your ovaries removed or ovarian oestrogen producing function has been reduced by natural or chemically induced menopause, our bodies can still make oestrogen although it will be in much reduced quantities. This is done by the action of aromatase converting other substances to oestrogen. Hence people may continue to take tamoxifen or an aromatase inhibitor (AI) such as letrozole to reduce risk of oestrogen receptive cancer recurrence.
Tamoxifen aims to stop circulating oestrogen acting on any cancer cells. Aromotase Inbitors, do as their name states and inhibit the production of aromotase so that the conversion to oestrogen is very much reduced. As far as I know, AIs can inhibit Aromotase by over 95%. Aromotase inhibitors would only be offered to premenopausal women if they have had their ovaries removed or shutdown has been chemically induced by other medication.
Everyone reacts differently to different drugs so please do not let other people's experiences put you off. I would advise that you make your own informed choice based on your personal situation. You may wish to ask your Onco about any side effects and how these could be managed, especially regarding anxiety and depression, whether a review would take place if you give them a go, whether NHS Predict (a tool you and med staff can use in ascertaining possible effect of treatments on survival) indicates a benefit in your situation, and how receptive your cancer was to oestrogen and what this may mean for you (usually indicated by a score of ER 1 to 8. The higher the number, the higher the receptivity to oestrogen).
Whether a person chooses to take the medication is up to them. Some people have awful side effects whichever drug they try and decide quality of life is more important, some people take and find side effects manageable, a person could take it without fail and still end up with recurrence etc. However, established research does indicate that there is less recurrence when treatment is undertaken. Unfortunately no one can really give anyone an individual concrete guarantees so it is all still a bit of a lottery.
If you do choose not to take, you may want to consider doing what you can to reduce odds of recurrence via natural means such as maintaining healthy weight, diet and exercise. There are substances/products out there that claim oestrogen reduction but commenting on them is well out of my scope. I would advise approaching with caution.
Hope the above has been of some use in your deliberations. What is important is that you come to a decision that you can be comfortable with.
You sound like you have been through the mill since your diagnosis and tratment, no wonder you're worried.
Re: you're query about estrogen following hysterectomy. There are a great many of us who have gone through the menopause where estrogen levels drop but still end up with estrogen positive breast cancer-highly positive at that. As I understand it although estrogen levels drop following menopause and hysterectomy, our bodies still make estrogen in our fat cells (you don't have to be overweight for this to happen, although being overweight increases the risk factor).
The vast majority of post menopausal women who have high estrogen tumors are prescribed drugs such as Letrozole.
I fully understand your anxieties relating to Letrozole- I was extremely anxious about the side effects before I took it. I have been taking it for 5 weeks now and the ONLY side effect I have experienced is some slight flushing but I can't say for definite it is the Letrozole as I was having them anyway.
What you tend to find is that it is only people experiencing horrible side effects that post about them not the tens of thousands of other people who don't, consequently it can seem much worse than it is. Unfortunately all you can do is give them a go and try to keep an open mind. If it doesn't suit you there are others your oncologist can give you to try.
There is a lady on here called Chick1, she has so much knowledge on a lot of things relating to breast cancer and it's treatments and I am sure she will be along soon to make herself known to you, she maybe able to answer some queries you may have or point you in the right direction.
I wish you the very best for whatever you decide to do. In the meantime don't keep worries to yourself there are lots of lovely people on here who will be more than willing to help/support you.
I was diagnosed with breast cancer in 2017 due to high estrogen levels. Had radiotherapy and was taking tamoxifen which didn't suit me.
Had a full hysterectomy last may 2018. Went back on tamoxifen but suffered with anxiety and depression.
My oncologist took me off tamoxifen for 6 weeks. Saw him again last week and he now wants me to start taking Letrezole but have heard they are not nice to be on and side effects are bad.
The question i'm asking is, surely if i've had a hysterectomy and have little estrogen in my body, surely the chances of me getting breast cancer back is not high?
Please help as i really don't want to take these but need to find out if i really NEED to be taking letrezole if my estrogen level is low after the hysterectomy?