Im sat here reading through a copy of a letter which my consultant has written to (modular new build team)?? After reading the letter im so worried and scared as it mentions that my cancer was strongly ER positive and after doing some research I have discovered that the survival rate is significantly lower than ER negative cancers.
Im not in a good place now as feeling very anxious and scared.
Can any of you lovely ladies helpnme understand what strongly positive really means.
The consultant wants me to take tamoxifen for two years and then arimidex for three years. The side effects from these drugs sound horrible and if at the end of five years I still have a high chance of it returning whats the point in messing up the next five years. I really dont know which way turn, totally confused by web sites!
I would appreciate you sharing your views and experiences.
Hi Lynne
I am sorry you have this worry, our helpliners are on hand today on 0808 800 6000 until 2pm, please feel free to call and talk it through with one of our clinical team, it may help
Hello Loubylou
I am sorry you are so worried but my advice is to keep off websites other than this one and Macmillan as they are generally scary and difficult to interpret. The best advice is from your consultant. People do report side effects with tamoxifen and arimidex. And you will see more people writing on sites like these with enquiries and issues than you will find writing about how much they like the medications. That’s the nature of things! You may well have no side effects. I am taking letrozole which is an AI like Arimidex. I have a few side effects but they are manageable. It can’t be great taking medication that gives you lots of side effects but if the medication is prescribed I suggest you take it and see how you get on.
Loobylou,
It means the cancer feeds off oestrogen. Many breast cancers are oestrogen positive.
The medication you mention helps. Tamoxifen locks onto receptor cells for oestrogen in your breast/body thereby stopping the real oestrogen in your body from doing so. That helps stop the oestrogen reaching and feeding any cancer cells. And hence reduces chance of a local or other reoccurrence.
Re your q about timescales, my consultant informed me that the first 2 years is when the risk is highest of a reoccurrence…hence usually they say take for 5 years, 2 years as a very minimum.
Sorry I can’t comment on Arimadex, when pre menopause I understand the only med which they can offer is tamo…there are other meds for women who are post meno…it may be one of those.
There’s a thread on this site under hormone therapy called “starting tamoxifen today” which you may find helpful to read. There are a number of women who were anxious about starting taking tamoxifen on the thread…and various updates as to how everyone is getting on a few months in etc. I was extremely apprehensive about taking the med but have been taking it for awhile now and haven’t yet grown extra heads!
I hope that helps. As far as I understand it if I hadn’t have been oestrogen positive, because of the size and grade of my lump I probably would have needed chemo. So it’s sometimes swings and roundabouts.
I’m a bit unclear, have you just had initial results or are you further along this journey?
When I did some research, and plugged my numbers into the Predict tool that is available to us as well as doctors, it said that my survival chances were higher because my cancer was strongly oestrogen positive so I don’t think you should assume this to be bad news. It also means that you have hormone treatment as an option to help prevent recurrence which wouldn’t be the case if you were ER negative so it is yet another tool you can use in the fight against cancer.
I’ve been told that taking Tamoxifen would increase my survival chances slightly, and like you I read about the side effects with a sinking heart, but we need to remember that it is not a given that we will get all or even any of the side effects and even if we do, there are ways to deal with them and if they get too severe, we could stop taking it and I understand that within 6 weeks there would be no Tamoxifen left in our systems so on that basis alone I think it’s worth a go.
I think it’s worth giving the BCC helpline a call, or talking to your own doctors, as I think they’ll be able to reassure you.
Hi Lynne, just to reiterate what others have said - my tumour was 8 for both oestrogen and progesterone so that’s as “strongly positive” as it gets. Although it sounds scary, every discussion I’ve had about it with my team, they’ve reassured me that it’s a really good thing - quite the opposite to what you have read.
It makes taking the tamoxifen a no brainer for me. Only 6 weeks in but not a side effect in sight so far (crosses fingers, toes and eyes!). Be sure to discuss anything you don’t understand with your BCN - all very well having information such as letters but counterproductive if it’s adding to your anxiety unnecessarily!
Hugs,
Kitt
X