tumour is strongly ER positive

[loobylou111]

Hi ladies,

Thank you so much for taking the time to reply to my post. I have found all your replies most helpful.

Its a scary time and I went into a panic!! I feel calmer now and have decided to give my bcn a call tomorrow to discuss some of my fears and worries.

What a journey eh!

Hoping you all have had a good weekend,

Love n thanks,

Lynne xxx 

[Kittkatt]

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

[JETS]

I'm still waiting on chemo decision but hormone positive (7/8) so understand that this combined with my age (45) and type of cancer - lobular - mean that tamox will give me a genuine chance of this bugger not coming back so will be on it for ten years....plus I've got not boobs left .....I'm suitably terrified Of drug side effects but 'ten years' means huge amounts to me - it means seeing my children through college and into young adults. I'm aware that my individual circumstances may warrant more aggressive further treatment with chemo and the ten years Tamoxifen is part of this aggressive treatment plan. Trust your oncologist xx. However, just as an aside - I get the "is it worth it?" Feeling - I've felt like this on so many days recently sometimes getting very very low and feeling, due to lack of energy, that I just can't take any more. I'm reckoning I'll hit up some kind of mental therapy to sort that out too!!! I did research on complementary therapy and think both yoga and reflexology seem to benefit, I'm not a 'self help' kind of person but feel fortunate that when I have got through a bad day I have the sense to be able to reflect that the mental fight is just another part of this. Five years will fly by x best wishes sarah

[ThePianist]

Hey Looby Lou - DON'T PANIC!

I was oestrogen positive and when the doctor explained it to me she was very 'excited' to tell me so. She kept saying "that's good!" I agree with Sharon that if you have a strong positive then they can tackle it better. This type of cancer is the most common one so lots and lots of research done on it. I am on tamoxifen for 10 years. I've been taking it since July - no problems. I get night sweats frequently but who says I wouldn't anyway - I'm 49!! There are people walking around who have no protection from getting this cancer. You and I, and many other lovely ladies, are being offered a way of keeping it away. Who's shoes would you rather be in? My oncologist told me that Tamoxifen will actually destroy cells that are 'doing whatever'. That made me feel really good about it. As far as I'm concerned I am now a step ahead of anyone who hasn't had BC and I take the drug without a second thought. My son was born without a thyroid gland and takes thryoxine every day and will do for the rest of his life. I will be honest I struggled with the 'long term-ness' of it to start with, but it's nothing. Where would we be if they hadn't discovered it? We feel lucky for him. It's no different than a vitamin pill, apart from it's free and it could save your life. Oh not the same then!

Just one little nag to add; why are you reading those websites? They spout a load of generalised and often Americanised carp!! I found a site that actually stated as fact that if your tumour is attached to the skin then it is immediately upgraded to Grade 3 and chemo is required. Absolute nonsense! Mine was attached to the skin and I was Grade 2 no chemo!

Keep your chin up; you've done so well. 

Gill

[13gerbera]

Hi Loobylou,

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.

xx

Sharon

[Seabreeze]

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?

Seabreeze

[Boa]

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.

[Lucy_BCC]

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

Take care
Lucy BCC

[loobylou111]

Hi ladies,

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.

Thank you,

Lynne xxx