been on Letrozole for 3 weeks and am feeling awful, whole body aches, terrible brain fog, feel really low, tired and lost all energy - moaning here but feel a complete mess. My cancer was very small and classed as low-intermediate risk, no lymph node involvement. Had Hysterectomy 5 years ago along with ovaries removed so not a lot of Oestrogen in my body at all as not had any sweats for years.
I am putting it out there as to whether I really need to take the meds. Happy to have the Rads but the side effects and subsequant risks of Letrozole make me really question if its worth it. I just feel that I am part of a plan where “this is what all women have so you will have it”. I also saw an article on Letrozole only being used for advanced BC which is something I dont have.
Any advice/hints/tips and wise words please??
This is a question really only your oncologist can answer. It sounds like you are really struggling on letrozole, so I would suggest to go back and ask them if there is an alternative. There are other oestrogen inhibitors they can try.
Any side effects that I have experienced tend to be short lived, however, there is no getting away from the fact that I do get achy joints and fatigue. Personally, I was told not to stop and I will perserve. I have been taking them for nearly 2 years now ( only 8 to go…oh joy! ) had lumpectomy, chemo and rads. No lymph node involvement, but grade 3, hence all the treatment.
Hope this helps xx
I had full hysterectomy 14 years ago with ovaries removed. Had oncology appointment last week and was told that there would not be any real benefit from taking tablets for 5 years. I had 18mms lump removed and clear lymph nodes, I am 57 so I wondered if it was my age? I was concerned as looking on sites there did not appear to be anyone who had radiotherapy but did not have to take tablets.
As Sue says, it is best discussed with mediacal staff and take it from there. Perhaps you might want to give it a bit longer to see if things settle or try another one of aromatase inhibitors or tamoxifen. Letrazole is most definitely not only used for people with advanced breast cancer.
No one directly forces us to take any treatment, so in answer to your direct question, no you don’t have to take Letrozole. In the end it really is up to you whether you swallow your daily pill based on what is important to you and how it affects your quality of life.
However, Oncology staff may be able to help you make an informed decision around recurrence/future risk. It may be worth findng out whether your cancer was highly hormone positive or not. You may want to check out the Predict Scores to see how hormone therapy may benefit someone in your position.
I take Anastrazole and have been on it for nearly a year. I also had no lymph node involvement. My hormone receptor status was 8 (so high). I am post menapausal so no oestrogen production from the ovaries. However, even after menapause or ovary removal, we still produce testosterone/androgens in our adrenal glands and aromatase will convert that to oestrogen. The aromatase inhibitors, such as Letrazole, will prevent that conversion taking place and hence less post menapausal oestrogen being produced in the first place. With Tamoxifen, the conversion still takes place but the drug binds to circulating oestrogen and prevents the oestrogen from reaching it’s destination (I am sure someone else can give a much better scientific explanation!!!)
I have some side effects but can manage these at the moment quite well. I have decided should my head hair start falling out then that will be the time to reconsider!! We all have our individual breaking points.
I hope you reach a decision that you are happy with,
Best Wishes to you and take care x
thanks for replying. I checked using NHS Predict and it was something like 97/100 surviving 5-10 years with no treatment other than surgery and rads with the options I put in. The tablets are really making me feel shocking and whilst I am off work that’s just manageable but looking longer term and going back to work I know that I will struggle. At the moment every day is like trying to wade knee deep in mud.
Best option at the moment is to talk to the Oncologist but I feel that I may be railroaded into taking them and don’t want to live a lie by saying I am when am not.
i have looked at natural methods I.e altering diet and also losing weight ( that would be a bonus!)
Hi Bellas Mum. I know exactly how you are feeling as i was just like you when i stsrted letrozole. 2 weeks in i could hardly walk with knee pain and i felt so low. I was going to stop but phoned and got an appointment for my oncogist. She asked me to persevere as she said the side effects wod settle as my body got used to tbe drug. I am happy to say they have.
I am now 9 weeks in. I still have achy knees but i am trying to do my 10000 steps a day and the exercise is helping. I am no longer feeling down and feel like I am starting to feel like me again. I am 51 and fi ished chemo on w4th Jan and had masectomy on 19th Feb.
Another thing to consider is the brand that you have. I am taking Accord brand as this seems to be the one that most people find causes least side effects. I ask my pharmacist to order it in for me.
I know we are all different and cope in different ways but i hope this horrible time passes quickly for you xx
Hi Bellas Mum,
It’s Emily here from Breast Cancer Care.
A few of our telephone volunteers had some severe side effects from letrozole and decided to change their hormone treatments.
If you’d like to chat to someone about this, feel free to call us on 0345 077 1893 (Mon-Fri, 9-5pm). A staff member will have a chat to you first to talk through what you’re experiencing, so that we can match you with a volunteer who’s had similar side effects and put you in touch.
Emily at Breast Cancer Care
Will call tomorrow and thanks again. That will be very helpful
Hi I was prescribed Letrozole a week ago at my post surgery appointment. I had a lumpectomy and snb on 2 23rd May all good news from surgery just take tablets and start Rads on 30th July. For the last few days I have experienced nausea and wondered if this is common. I know its early days but I feel so sick I would just like reassurance that this is a temporary thing. Thank you
I have had nausea, headaches and loss of appetite so I think it is a side effect. One lady on here didn’t get any side effects for 6 weeks but mine weee virtually straight away and got worse. I will be ringing the BCC line later today
Thank you Sue and Bellas Mum will try taking at night and see if it gets better x
Hi, I was given Letrozole following my lumpectomy stage 1-grade 3, no nodes involved and underwent rads for 15 sessions. I took them for around a month then felt so ill with leg pain which just didn’t abate and moods swinging to and fro and feeling quite suicidal, which was v scary, that I spoke to the helpline, then my bcn and saw my Oncologist May 18th and he changed me onto Tamoxifen which I’m yet to begin as I’ve just moved home a month after finishing rads, and I’m already shattered and the idea of side effects spiking has delayed me starting the tabs!
I’m dreading taking them, but will give it a go, if the se’s are awful then I’ll have to rethink again.
Another friend took Tamoxifen and couldn’t tolerate them but was changed onto another tablet.
Ofcourse, I think it depends on what sort of tumour you’ve had, so talk to your Consultant, BCn, ask questions and be comfortable in making the right decision for YOU.
Thanks for the reply. I had virtually the same as you in terms of tumour and surgery/treatment. Have started to take the medication at a different time of day and not with the rest of the medication I am on. So far so good.
Did not get a reply from my Onc when I rang so am going to talk it through with someone from BCC forum volunteers.
Good luck too x
I am also wondering about this drug
I have had ME and Fibromyalgia for 30years now but finally had managed to cope with part time work and freelance arts projects which I love.
I had a lumpectomy and stage 2 Grade 2 invasive ductile cancer with 3 lymph nodes positive and was recommended Chemo and Radiotherapy plus Hormone therapy
I am 53 years old and refused Chemo as my immune system would not cope with it and the benefit was 6% over 10yrs in terms of life excpectancy.
I have 73% chance of being here in 10years according to Predict without letrozole .
i have only taken it two years and feel dreadful
it is like having ME all over agsin
muscle Aches - joint pain - fatigue - headaches and loss of appetite and anxiety
i feel dreadful and needed to be ok as returning to work this weekend so couldn’t take them as never would have coped. I felt better could walk - bend over - use my arms - keep awake and work and enjoy it.
i feel that as there is no guarantee that this drug will work and my quality of life will be seriously affected again.
I have agreed to persevere but have looked at alternatives- diet / supplements and exercise
I know others who will not agree but it is our choice and nobody can force us to endure these SE
Also stress and depression can make the body produce Cortisol which in turn can over time contribute to cancer recurrence.
i have had severe depression and anxiety before and fear that this drug and its affects will bring it back which is to me as scary as cancer.
Sorry my last post said 2years instead of two weeks
I can’t imagine taking this for two years !!!
Hi Bellas Mum just wondering if you have any further news have you managed to get in touch with the BC nurse and if so what did she say. . I don’t feel as sick now but have developed pain in my knees and ankle it’s kept me awake almost all night. I feel as if I’m about 90 this morning. I have been getting more and more depressed since Friday and wonder what’s the point. I’m taking so many tablets these days I hate the person I am becoming. My OH is still sleeping in the spare room as I’m so restless with the night sweats. I have only been taking this for two weeks and realise I need to give it a chance but I am so down this morning. I still have to get through my 15 sessions of Radiotherapy which do not t start until the end of July Sorry for the miserable post I just want to be the pre Cancer me again
Thanks Bellas Mum. Will call the number you suggested a bit later today. We have a sunflower centre here in Liverpool and I’ve been going to mindfulness sessions there but they have other groups so I’m going to ring them today and see if they can help in any way. Thanks again for your help it helps to know I’m not on my own in this. Good luck tomorrow let me know how you get on xx
Thanks for replying. I was telling my OH about the se’s. Not good is it and very scary. I hsd s break of a few days and started the meds again. Seems a little better. I also take pain killers before bed. My BCN told me that 2 weeks is not long! You have been through a lot recently not only with the BC but also moving home! Look after yourself x
Bellas mum. Deb glad your session went well and you have all your future dates. My planning session is on 13th July so that’s my next target date. Still waiting for my appointment for bone scan but understand that they are very busy at the moment. Did you have a CT scan at your planning meeting?. Glad to report feeling better after changing the time I take the Letrozole. Not feeling sick now just ache a bit in knees and ankle but I used to do a lot of running when I was younger so I’m not surprised the joints are playing up. Hope today’s session is as positive for you. Chris x