Hi everyone. I’ve been on letrozole for 3 months after a therapeutic mammoplasty and radiotherapy. At the start, I too was having so many hot flushes and my mood was low - I was unexpectedly weepy. 3 months in (and post treatment), the hot flushes are less frequent and I’m not so weepy, though I think my resilience is going to take time to build. So for the moment I’m continuing with letrozole. But I know side effects are different for everyone and that a change of AI might help in the future. It’s not always easy to know what to do for the best, is it?
Dear Cleolotus, I’m sorry to hear that you are struggling with the anti oestrogen medication. You are dealing with the loss of your sister as well, which will be having an impact on how you manage this “journey”.
I’m 70. I was Stage 1 in July last year. I had a mastectomy in September which went very well. I stood in front of the mirror beforehand and imagined the scar and therefore, psychologically, the loss of the breast is fine, I see it as a sign of my life being saved.
I was on HRT and had to stop, obviously, and start taking Letrozole. The joint pains, hot flushes and interrupted sleep were so depressing that I felt I would rather have had two mastectomies. My GP prescribed Clonidine which reduces the effect of Letrozole. Clonidine lowers the blood pressure and it has reduced the hot flushes probably by 50%. The muscle and joint pains are still present but the more I move, the less the pain. The winter is worse for the hot flushes because one wears layers to keep warm but the layers have to come off with the hot flushes. You say you don’t have hot flushes yet and I hope that you don’t get them, you probably have avoided them by not eating sugar because that is a trigger, as is spicy food and too much dairy food. Well done on losing weight.
To help with the hot flushes, My GP offered me antidepressant or Clonidine, I chose Clonidine but you might be find antidepressants to be more appropriate.
Antidepressants are prescribed in a mild dose, they help with muscle pain, that might be the answer for you, indeed, antidepressants might help you to cope with your grief. You can ask for counselling but of course, there is a long waiting list, so, it might be an idea to get on the list sooner rather than later.
I have a lovely GP, I hope you have too. Your MACMILLAN nurse can get the surgeon to write to your GP with suggestions.
I hope I’ve helped a little bit.
I cant tell you how many times I have thought of stopping the medication, but now two years into treatment it seems that my body has got used to them. I have adjusted my life a little, to cope with any fatigue and joint pain, and keep reminding myself that I am atleast warm and upright. Well done on your weight loss, no mean feat on hormone blockers. I have also taken up cold water swimming which has been so wonderful for my mental health, so much so that I am now withdrawing my antidepressant medication which I have been on since before my diagnosis. Sounds to me that you are doing well and I wish you well in your ongoing journey.
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Hi Cleolotus,
Here’s a good tip. If you get a lot of aches & pains ask to change to EXEMESTANE the pains seemed to disappear very quickly. I was on Letrozole after my 65mm tumour was removed (no reconstruction last April), for a few months .. not good .
Sleeping is also much better since the switch. It’s more expensive so your Oncologist may be reluctant but for me it made a big difference .
Good luck!
Hi cleolotus , checking on you. When do you go back to the doctor ?
Hi Blessed
It certainly has been a roller coaster ride on this Medication. My partner is a nurse and has been my rock throughout this whole thing. I found myself feeling very low and flying off the handle about the smallest thing. The final nail in the coffin for me was when a few days later I started to feel some suicidal ideation. After working at a Crisis Hotline helping people with suicidal ideation and then experiencing it myself for a time during Menopause I know what it feels like. My partner and I decided that it is best for me to discontinue the medication……. I agree with another poster on here ….. it is a dirty drug. I have been off it for around 4 days now and feel back to my normal self. The suicidal feelings have disappeared. I also found that my eyesight was being affected. I was having to put my reading glasses on while driving which I have never had to do before. I have my surgery date now 29/1/26. I figure they will have some recommendations for me after the surgery as to what I should do.
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Wow . You have been through alot since we last talked . So happy for support from your partner . You know your body better than anyone else . I feel like if the medicine makes your quality of life worse then you need to discuss that with the doctor and choose what is best for you . I see you did exactly that .I’m glad you talked to someone when you were suicidal so sad . Praying you are better now . I always say you never know what someone goes through unless you are in their situation . I’m still taking letrozole . They call it the demon drug . Glad your surgery is not far off . I hope they offer you the oncotype test which is very useful in determining the probability of the cancer coming back and whether you would benefit from chemo . I know it’s a lot of stuff to go through . Cancer is scary but it helps knowing some of my friends have gone through cancer and are 20 years out and doing great . That’s what I wish for you and I and everyone on this forum . Hug!! Take care
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Thank you Blessed 
I recall someone on here mentioning to just try it and see how you go. I am glad I did that because now i know exactly what it can do. I am so glad to hear that you have seen some really positive cancer journeys. That is what I wish for you too and everyone experiencing this. What I wish for more is a cure to be released so all of us don’t have to endure anymore of these ridiculous and disfiguring treatments.
Hi cleolotus I hope you’re doing okay & feeling better.
I also was diagnosed with Lobular Breast Cancer in February last year. What a sneaky cancer it is!! It often grows in “strand like” form so is often undetected on mamagrams, as mine was sadly. In May after several CTs, MRIs & bone biopsies I was told I had stage 4 metastatic breast cancer. There will be no surgery now, just medication to “manage” the cancer.
It felt like I’d been hit by a bus to be told this on my first visit to see my Oncologist for the results. I had been mentally readying myself for a mastectomy & chemotherapy & to one day soon, be free of cancer.
I’m now trying to cope & live each day with being on Letrozole & Ribociclib for the rest of my life, it’s tough going I can’t lie! Depression, anxiety, extreme tiredness, aches & pains (especially my neck) hair loss etc. I now have to take antidepressants to help me get through my life on this medication & diagnosis. I’m currently on a waiting list to see a cancer clinical psychologist, sadly though there’s a 5 month wait until one is available.
Hopefully one day soon there’ll be a new, kinder, cleaner medication we can take with not so many nasty debilitating side effects.
Wishing you all the very best for the future X
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Hi Loki
Thank you for your kind reply. I am so sorry to hear what you are going through! It must have blindsided you to go from thinking it was a likely Mastectomy to Stage 4. In my case I have felt a lot of regret as I did not have Mammograms….. so many reasons for this including many male doctors (some ineffectual) and then I left a country the year I would have entered a screening programme. When I did know something was awry my sister was dying and my partner was unemployed so I was the sole earner. In hindsight I realised that I had seen my sister go through so much medical trauma that alot of it was fear also. Because the cure for this is honestly worse than the disease! A lady at work said to me the other day “you must be so happy to have your surgery date” and I said “I am not happy about any of it and don’t want to do any of it either” That is the real feeling I have about it. Who honestly wants to get radioactive material injected into you and then be cut up all over the body in a 7 hour operation! Like, can’t they do better than this after all the money donated for Cancer all over the World??? I hope and pray for both of us and for everyone on here that this is the year that they understand cancer and develop a safe cure that enhances the body rather than destroys it. I urge you to take good care of yourself and look into alternatives if you can also. Look into self care for your whole self including Counselling, Meditation and ways to support your body. My tumour is large but it does not appear to have spread. My Dad had a reason that the Medical Profession never gave me……….. your body is fighting it. Your body can fight it too given the right conditions. Take good care of yourself and know that we are all thinking of you and sending you Love on this journey that no-one should ever had to go through.
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Hi Cleolotus thankyou so much for your understanding, kind reply. It helps massively to come on here & talk to people who really understand.
I will certainly look into meditation! It can’t do any harm & I may find it really helps to ease my over busy over thinking mind. Thankyou for the advice!
Please try not to waste your precious energy on regrets, it changes nothing & you need your energy to focus on healing & getting through this awful time. You’ve been through a lot, be kind to yourself.
Take good care of yourself 
Thank you Loki for your kind reply too I will take your advice and leave my regrets in the rear view mirror. In some ways I feel very blessed as I am 56 and have lived a lot of my life. I have travelled and had some wonderful loving relationships. I heard recently of a daughter of a colleague I worked closely with. She is 26 and has just had a double mastectomy. I went home and cried and cried for that girl because her journey is going to be so different from what she anticipated. I just sent an email off to my very first boyfriend to tell him the news. I thanked him for the 4 years I had with him and his continued friendship throughout my life. I believe this diagnosis makes us realise that every second is important and life is to be lived in the present moment. I urge you to make each moment count and to do the things you wish to do. This year I did a pottery course and also a bonsai course - both things on my bucket list. If things don’t go to plan in this surgery and my journey ends I can honestly say I have lived! That is what I wish for you and for all of us.
Much love to you too
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Hi, I haven’t logged on for a very long time but saw your post and couldn’t scroll by .
You have certainly been through alot.
I just wanted to give you BIG hope .. I was diagnosed in 2008 with stage 3 invasive Lobular Bc . I was 43 yrs old at the time . I had a lumpectomy , full axillary clearance (23/25 lymph involved ) 6 months chemo & 18 radiotherapy. Then 10 yrs hormone therapy.
This year that was 18 yrs ago 
Please feel free to message me if you think I can help at all xx
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Hi Loki, I also have stage 4 lobular breast cancer. I have mets in most of my bones including whole of my spine, pelvis, hips ribs and skull. I am on Ribociclib and exemastane. I have found that it does get easier as you go on, I was diagnosed just over a year ago. Last year we went to Portugal for a holiday and go to Iceland in two weeks. It is really tough and I have a lot of pain in my back. But I am living with this and have a good quality of life. I just wanted you to know that you are not alone. Also there is a cancer charity called Penny Brohn and they do amazing online zoom courses. I have just completed one called going through cancer treatment. There is some really good advice and tips. I also do clinical hypnotherapy through them on zoom on a Thursday. It really helps to relax and ease your mind. Maybe you can find something on there to help you until you get get to see a clinical psychologist. Big hugs.
Lee x
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Hi Leelaloo1, thankyou so much for responding to me, really appreciate it.
It’s good to hear that you find the treatment gets better tolerated as time goes on. Hopefully that will happen for me soon. I’m almost 53 now & I’ve been taking Letrozole for about 9/10 months & Ribociclib about 7/8 months I think & I’ve had 2 Denosumab Injections up to now. Hopefully things will settle for me soon. My main struggles are severe tiredness, depression, no interest in anything, everything is such an effort sadly & anxiety ohh & the hair loss isn’t great either.
To top things off my husband is waiting for an urgent cancer referral for lower GI investigations. Will this nightmare never end!
Thankyou so much for sharing the on-line support groups with me, I’ll be looking them up.
It’s great to hear how well you’re living with it & getting away on holiday. You’re doing incredibly well!
Thanks again so appreciated!
Loki XX
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Hi, thank you for this message. I was diagnosed with LC yesterday and while I walked out of the clinic hopeful that has been wiped away after reading everyone else’s journeys. I have a bit of waiting to do for the contrast mammogram but I will head towards that with new hope xx
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