Hello Stepnes

I'm sorry to hear about your diagnosis last year. I hope that you're fully recovered from your surgery by now. 

I know that we have got a number of women here on the forum who have chosen not to take letrozole/Anasatrozole/Tamoxifen and I hope that some of them will post to share their experiences with you. I know we also have women here on the forum who have taken the recommended medication and not experienced any, or very minimal, side effects and it may be that they post as well. 

It's absolutely a personal choice but I'd encourage you to speak to your breast care nurse or the Consultant and just let them know that this is what you've decided. 

If there's anything that you would like to talk through with one of our team of nurses you're most welcome to give them a call. They're available on 0808 800 4040, Monday to Friday 9 am to 5 pm. 

Best wishes, 
Jenn
Cancer Chat moderator 

Hi Stepnes

I was diagnosed in July 19 after finding a lump, I started on Letrozole in August and had a lumpectomy in sept followed by  3 weeks radiotherapy in december/Jan. I had terrible hot flushes and joint pain/stiffness with the Letrozole but hoped they would get better. It didn't and after discussing it with the oncologist I changed to Aromasin in Nov 20. The side effects have improved a bit on this.

I have to say I have thought about not taking any hormone treatment  as like you say it is affecting my quality of life - I do not sleep very well and still have the flushes and joint pain. The reason I persevere is that the cancer was found to have spread to 1 out of 3 lymph nodes they took when I had the surgery so feel I should do everything possible to prevent reoccurrence. No one can really advise you - it's your decision. I always find discussing things with the oncologist helpful - I tend to convince myself of the worst case scenario and need someone to point out the facts. Sorry if I have waffled on - I hope you come to a decsion you are happy with

Love and Best wishes

Hi Jenn

Thanks for replying.  I am recovering from my surgery very well thank you. That's one of the problems really - having got very very anxious about being diagnosed with cancer, needing surgery, possibly radiotherapy - now finding I've recovered very well and quickly from surgery, cancer cut out with a good ring of unaffected tissue around it, not spread to lymph nodes, radiotherapy not recommended, and discharge letter stating that such a cancer is unlikely to return in my lifetime, mentally I want to draw a line under it.  I feel so much better in myself since surgery and positive results that, selfishly, I have no desire to go 'downhill', albeit in a different way, and lose the positive mental state I'm in at the moment.

I'm sure the helpline will be lovely, but I feel they're going to say 'try them and see' which is what my breast care team have already said. I feel incapable making the decision either way!

I'd love to hear from some people who have not experiences any side effects, or very minimal ones.

Best regards

stepnes

Thank you for replying Rosie9122.

I am really sorry to hear about your diagnosis, and that the cancer had spread to your lymph nodes.  I sometimes think that if my results were not as positive as they were I'd be ble to decide more easily about taking the tablets. I can certainly understand why you feel the need to persevere with them. Really sorry that you experienced such nasty side effects.  I've just googled Aromasin and it comes up with most of the same, but you say they only helped reduce side effects a little?

Likewise, my apologies for waffling on, makes us feel better doesn't it to offload a bit.

Good luck to you 

stepnes

Dear Stepnes

So sorry to hear about your diagnosis and particularly your dilemma regarding Letrozole. I was diagnosed with grade 2, 5mm IDC BC with DCIS September last year. Sentinel node, only micrometastasis so taken as no spread to the lymph nodes thank goodness. I had a lumpectomy with clear margins then I had the FAST Forward 5 days of radiotherapy and no chemo, for which I am very grateful. I was top of the pops for both ER and PR, was on the Contraceptive pill for many years and no children, two potential known risk factors. Oestrogen, they say, is like a fertiliser for BC, difficult when it is what makes us womanly. Now comes the hard part Letrozole, is it the devil incarnate or Santa’s little helper? I am not taking this lightly by any means, but I totally understand where you are coming from. I am 66 this year so we are both of a similar age and quality of life is so very important especially the older we get. My oncologist said the same 1% benefit over 10 years, I am not sure if recurrence is included in this figure or not. There was no rush for me to start the Letrozole so when I received my prescription, I just kept staring at this little box of tricks thinking do I take the plunge or not. After much deliberation about a month, I went for it, I am now 2 months down the line and have no muscle aches or pain, I just feel more tired than usual (I still work full time) and have lost some weight which could be down to walking a lot more than usual and watching what I eat. I am looking into possibly starting a vegan-ish diet which is plant based, who knows maybe that’s the answer to all our prayers. Anyway, it is early days taking the letrozole and what my situation will be in 6 months’ time with regard to side effects is anyone’s guess, I may have changed my mind. My breast nurse said you don’t have to take the Letrozole as the medical professionals will be keeping an eye on me with regular check-ups for 10 years, plus I’m having a Dexa Scan next month to check my bone density. If I start to get awful side effects and these become unbearable, I will stop, there are alternatives, even Tamoxifen which, sadly, has its own Pandora’s box of side effects. All I know is I am giving it my best shot, for the time being at least. We all know medications have side effects, even paracetamol, look at NICE, BNF webpage, that just might help you to put things into perspective. However, with the reassurance from your medical team that your cancer is unlikely to return within your lifetime I can understand its a tough decision for you and either way it’s not an easy choice to make, I wish you all the very best in whichever path you choose to take. x

Thank you, Devonshire, for sharing your situation and thoughts with with me. I, too , keep looking at the little packet in the drawer by the side of my bed.  I, too was on the contraceptive pill for about 12 years, also on HRT for about the same time.  I have had two children and breast fed them both, which I thought would contribute to not getting BC.  Yes, I know about the side effects of paracetamol etc, but took the view that if they were as bad as suggested they could be, most if the country would be 'off sick'! 

You are the first person I've read about who says they do not have many side effects.  Also, I'm loving weight loss - the most positive thing that's been said about these pills.

I feel for you as you're working full time through this. I'm thoroughly enjoying my retirement and don't want it to be jeopardised - selfish I know, but we are what we are.

I wish you all the best with your medication, and future check ups which I shall also be having.  If you'd like to update me on how your body is responding further down the line I'd be very grateful.

Take care and keep safe

stepnes x

Hi,

 I have been taking Letrozole now for 9 months since being diagnosed with Stage 2 invasive breast cancer and have been told will have to take it for 10 years as my cancer is HR+ and oestrogen causes the cancer to grow. I am 64. I have had no side effects at all from the Letrozole. I also had a bone density scan which was fine.

 I did also take Ibrance with the Letrozole for 6 months which is a targeted therapy, this did cause a little hair thinning and tiredness in the daytime but nothing serious.

I have had a lumpectomy 4 weeks ago and now waiting for results of Oncotype DX test to see if my next treatment will be chemotherapy or radiotherapy.

I hope this might be of some help in your decision re the Letrozole.

Regards Kay