Well done @entropy 5k is great. I struggle to do anything that includes bouncing as it impacts all my joints. I tried skipping with cancer research 100 skips a day, I did 5 days and was in agony. I know I need to bounce to build up bone density but it’s hard. I will try again will less bouncing and build up slowly.
I gained a lot of weight with chemo and other drugs but I have found, walking every day before breakfast and reducing portion size is helping. I’m now back to pre covid weight, think it was alcohol. I don’t drink alcohol anymore and I think that helps too.
Lol, when I was pregnant I gave up weighing myself when I got over 12stone. That was long ago though and lost it via breastfeeding and probably stress of returning to work.
Damaged some cartilage ( could of been meniscous) in April. Its been a long road up to 5K. The elliptical machine definitely helped to keep in shape while I rested my joints and I still do some to warm up my knees, hips etc before attempting a run. You have to really warm up everything to get the joints lubricated before doing any load bearing exercise.
Hi everyone. I wish I could take letrozole because at the moment I feel abandoned. One of the G.Ps at the health centre told me in July that I was at a high risk of having a stroke because I’ve already had one and it runs in my family. I took Letrozole for just over 2 years before the chest pains started and was told to take a break until after a heart scan. The heart scan was booked in that month but I still haven’t got an appointment. What makes the situation worse is that I’m getting different answers to my questions. One “consultant” (she actually works in the radiology department) asked me what makes me think I should stop taking letrozole as she knows there’s no evidence of letrozole causing heart problems or strokes. The simple answer was because I’d been told to stop by the breast clinic. I have tried taking one every other day but the fear of letrozole and the conflicting advice is now impacting my life so I stopped altogether last week. I had an appointment with a doctor on the 26th and when I got there she hadn’t a clue why I was there. We chatted about AIs and she said the ball was in my court whether I took them or not and they wouldn’t prescribe Tamoxifen. She did say that the lumpectomy, radiotherapy and 2 years of letrozole protected me for a while but my concern is whether metastatic is a risk. The G.P. told me to start living instead of existing but that’s easy for him to say as I think I must have been born with a tendency to overthink. I’m the one who plans and makes lists and the one everyone turns to when things aren’t working out for them. I feel adrift, all at sea and worst of all very lonely because “the ball is in my court”. It’s my decision and I know that but it would have been nice and comforting to have just one iota of reassurance. I’m 72 so I shouldn’t be scared but since I haven’t been taking the letrozole I feel physically much better and I want to keep this feeling for a good few more years. If only my mind would stop overthinking or someone would just listen to me, look at me instead of a computer screen just for a short time. Straight answers should not be so difficult to give after all these years of having AIs around. As I said at the beginning, I wish I could take letrozole, it was my safety net despite the usual side effects of joint pains etc. I tolerated those well enough but I can’t until I’ve had the heart scan.
Hi @lori06 . To clarify one thing - if they think that you are at high risk of having a stroke or another stroke Tamoxifen would not usually be an option as it does carry a risk of blood clots which is why I’m not allowed to have it . The consultant in the radiotherapy dept. is incorrect as there are risks to your cardiovascular health from taking Letrozole - it can cause high blood pressure and high cholesterol . I’m tempted to say she should stick to her own specialty - there I said it. I’m hoping that as you’ve had one stroke your BP and cholesterol are being monitored already so if they’re currently stable that might help you to decide . I’m sorry that you’ve been left so adrift with this and are having to deal with contrary opinions and I’m wondering if it might help you to contact the Nurses on the helpline here and talk it through with them. Xx
Hi Joanne. I’m taking anti platelet medication (clopidigrel), statins and BP medication. I have to monitor my own blood pressure, it did go up so my GP increased the dose of BP meds. Before I started letrozole I had managed to keep my cholesterol at 3.5 with diet, exercise and statins but it rose quite a lot within 6 months. I didn’t know it had risen until I asked for a blood test but they said it wasn’t too bad at around 5. I agree with you about the radiologist. I managed to get in touch with the cardiology department today, the booking office told me to talk with the secretary of the doctor who is in charge of that department and gave me her name and phone number. Well when I got through to her she went mad and demanded to know who gave me her number. When I told her, she said they must have got their knickers in a twist (her words not mine). I was shocked by her behaviour. She put me on hold while she tried unsuccessfully to get through to them. Then proceeded to tell me I wouldn’t be seen for months, well into next year and I would need to talk to my GP. I started to get angry by this time as it was a GP at my medical centre who told me to get in touch with the cardiology department. I told her I was sick of being passed around and that my GP had told me that the whole problem of whether letrozole caused stroke recurrences or heart problems was not in their field. She said/shouted that they should know and should read books and was fed up with GPs not doing their jobs. By this time I was beginning to shake at such unprofessional behaviour. She also added that anyway, I won’t be seeing the main man (I shan’t name him here) but one of his team. By this I guess I’m not important enough to see her boss. The conversation ended and I just sat there stunned. I’m more or less self medicating and have been for almost three months now. My husband heard the whole thing and has decided he’s going to the medical centre tomorrow and see if he can sort something out because I’m too exhausted to care now. I even started thinking of reducing the thyroxine but decided against that because it shouldn’t be up to me to decide. I feel like a burden to be honest and scared to bother them all. Thankyou for reaching out to me. It means a lot…truly. None of what has been happening makes any sense and I don’t think I’m the only one who has been made to feel intimidated by people who should show more empathy towards people who are feeling vulnerable and a little bit lost. It costs nothing to be kind or at least polite. Once again, thankyou. X
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Lori06. I’m so sorry to read your story. A dr should never say ‘ ball in your court’ for something as big as this, especially when you’re clearly anxious and conflicted. They should be giving advice based on knowledge and facts.
A good oncologist should be very knowledgable about cancer drug side effects / risks and so perhaps you can ask for a second opinion from another oncologist - you’re within your rights to do that and you could explain it’s because you’re getting conflicting advice. They could also talk you through your risks of recurrence eg. using predict (and your Oncotype score, if you had that test?) to help make a fully informed decision.
You could also ask a good pharmacist about Letrazole and cardiovascular risks?
There is also ‘ask our nurses’ on this forum, or even better you can give them a call so that - as you say - you’re speaking to an actual person.
I wish you all the very best, please know that you don’t have to do this alone - I’m 100% certain there are others with the same considerations, and there is support out there
Thankyou for replying and the flowers. . I’m going to try the G.P. Hubby says he’ll go with me this time and I’ll also take advice and speak to the breast care nurse. All I want is someone to give me all the information on my situation so that I can make an informed choice on which path to take. I do have a predict score of 2% survival with letrozole, we don’t have onco scores where I am. I was told by the breast clinic that the predict was mainly for clinicians so that they could decide on treatment. I don’t know if that’s correct as I’m used to getting all different views. I was lucky that the stroke just made me partially sighted and I’ve learned to adapt to that. It does run in my family, people are surprised it happened to me as I’ve always been active and thin. Unfortunately just recently one of my Sons has been put on the same medication as me due to high BP and cholesterol even though he’s quite young and also active and watches what he eats. So anyone here who takes letrozole, please don’t think it will happen to you. Letrozole did not cause the stroke, It happened to me when I was 63 way before I had breast cancer. I don’t want anyone to be frightened because of my posts. Take care and God Bless. X
Hi I am not surprised you are over-thinking about everything. I am also on Letrozole for 2 1/2 years …same as you joint pain but i can tolerate it. I too have received conflicting advice and in appointments (6 months apart) with the same consultant i received changed advice ie back tracking on earlier direction re my health. Not sure what to advise …i always see different consultants at my appointments so the advice always changes slightly. My advice is to make a decision based on the all the available information and what you feel is best for you … Breast Care Nurses can help, some great help lines about and I go to face to face monthly support groups …where i get some great advice. I have Secondary Breast Cancer and some of the other women challenge their Consultants as they have had 2BC for a long time etc. My personal advice is to listen to your Oncology Specialists …which is what I do …I have had mixed experiences in the NHS but I try to concentrate on the excellent advice I have received to keep my from getting stressed …hope this has helped
Thankyou Jennifer. Yes your reply has helped me. I don’t feel as lonely now. I never had an oncologist, just the breast nurses at the breast clinic. How do I get an oncologist? All I saw was the surgeon who was very kind and then after that I was given a card with the breast clinic nurses number to ring for advice. Maybe I should give them a call and ask how to get to talk to an oncologist. Hope everything goes well with you. Take care. X.
Definitely…you have other medical conditions to consider…sounds to me you need a review by a Consultant or your local cancer hospital. I have dealt with a number of BC Nurses …some have been really good. If you are not happy with any advice you receive from the BC Nurses …ring again for clarification and ask about face to face support groups. I am very lucky that i am under Christies (Manchester) and our Maggie Centre is very good …i know i can always call in to Maggies for a cup of tea and advice and to see what groups they have …lots going on …you are not on your own … I also had Macmillan Counselling ( was always a massive sceptic about Counselling) but i realised I was struggling with my Diagnosis and found that really helped me …I am now medically retired so my diagnosis has impacted me greatly but i concentrate on what i can do …helps me …good luck with how you get on with seeking further advice …take care
I’m so sorry for the appalling way that you were treated by that medical secretary - honestly I think you should contact PALS and raise a complaint about her behaviour so that she is made to understand that she can’t speak to people like that.
I’m not sure what factors have led you to consider reducing your Thyroxine - you didn’t mention it in your original post but please don’t do that without medical input . I know it’s tempting sometimes when you feel you don’t get the right input to self- medicate - I did it myself once with not very good results but Thyroxine is a hormone that we all need and it’s more dangerous to have too little than very slightly too much . Again they should be monitoring your levels via blood tests .
I read a thread on here once from someone with very complex medical problems who had been given conflicting advice from different specialists and her GP was able to get them all to have a meeting and come up with a plan . Whether you would be considered a complex enough case for this I don’t know .
At the bottom of all this is your fear and anxiety about the risk of your breast cancer recurring - something that we all live with to one extent or another . Everyone’s situation is different / medical history / age / lifestyle as well as type and grade of cancer at the end of the day unfortunately as regards the Letrozole the ball really is in your court - unlike with the Thyroxine . I’m going to fess up right now and tell you that I stopped taking my Anastrozole after just a few miserable months . However my situation and yours will be completely different . I still think it might be helpful to speak to the Nurses on the helpline here and you could clarify with your BCN in regard to your risk of being off Letrozole in the meantime . They might be able to expedite your investigations . Sending love xx
Hi there Joanne. I was thinking of lowering thyroxine because a few years back the GP admitted that they had over medicated me and had to reduce it. The symptoms I’m having were the same as when I was over medicated, fast heart rate, sweating, losing weight etc. I’m going to bring it up when I see them, hopefully this week, along with all the other stuff. We are told we can only discuss one problem in our appointment but they’ll have my husband to contend with this time and although he won’t shout or get angry, he’ll be firm and his presence will reassure me. When I’m there alone I’m in and out within 10 minutes. I always apologise for being there haha. I’m mainly scared of metas and that’s why I keep thinking “what if”. I wish I could stop thinking too much. I’m going for my long walk with my dog, meeting up with a friend too and that helps. We don’t mention our health, just enjoy the time walking through and with nature for a few hours. It’s coming back I don’t like. Thankyou for getting back to me. Take care. “Hugs” and God Bless. X.
Yes I find this business of only treating one problem at a time frustrating - that isn’t how our bodies work . Someone I knew who was working as a Practice Nurse left her job because her appointment times were only 10 mins - some could be done in that time but others not. If she went over the 10 mins she got a reprimand from the Practice Manager - who was not a healthcare professional themselves.
Perhaps you ought to make the Thyroxine the first stop if you’re experiencing all the same symptoms .
My Surgeon also was the one prescribing my hormone treatment initially - Tamoxifen. I did see an Oncologist once who changed it to Anastrozole after I told her I had had central retinal vein occlusions 3 years previously . So we have something in common in that we have both adapted to living with a visual problem .
I know not everyone sees an Oncologist although after surgery your case will usually be discussed at an MDT where there might have been an Oncologist present . The Breast Clinic Nurses may be able to get you a referral . As to Predict only being useful for clinicians my Oncologist went through it with me when I said I was afraid of the hormone therapy - but mine was very low grade tubular which rarely spreads outside of the breast . Obviously there are no guarantees .
Enjoy your walk - time spent with dogs and friends in nature is one of the very best and most joyous things . I hope the sun shines for you where xx
@lori06. I’m so sorry to hear with everything you have had to deal with. I’m annoyed on your behalf how the doctor’s secretary seems to think you should not be able to contact her direct. I am under a cardiologist and hadn’t heard from them in a while and my treatment can affect my heart ( chemo/herceptin as well as Letrozole/exemestane). My cholesterol was 7 and GP said they did Q risk nd it was ok. British Heart foundation cardiac nurse took mine and family history and politely said I needed to push back to GP. I also emailed my cardiologist’s secretary, who had now moved jobs with health board, but very politely replied and forwarded my email to new secretary. Two weeks later I had an out of the blue phone call from the consultant cardiologist (NHS). Said I needed statins and new heart tests/scans.
If it was me I would ring my breast care nurse and talk this through, they can liaise with your breast consultant and multi disciplinary team. They should be able to help and if not can either direct you or contact them on your behalf.
I hope you get some more information at your next appointment and better service from healthcare professionals.
Thankyou naughty boob and my thanks go to all of you who have reached out to me. After my walk the first thing I did was leave a message for the nurses at the breast clinic asking them to call me back. Then I called the helpline here which was also useful. I’m going to make a GP appointment on Thursday. The only way I can sort things out is to ask the GP if my statins and BP meds can be increased if and when necessary and ask the breast clinic for someone other than a radiologist to have a chat with me and maybe communicate with the GPs. I also need the GP to get in touch with the cardiology department with a view to asking why a heart scan should be so difficult to arrange. My friend got her appointment a couple of weeks after her referral. There is a distinct lack of communication between all of them and finger pointing is not the way to get things moving. I hate having to be so assertive but my mental health is now suffering and that will have a negative impact on my physical health. I have to make them aware of this not just for myself but for my family who need and love me as I love them. I’ve been too apologetic and actually fearful of being a burden for too long. Thankyou all for helping me, your advice and back up made me feel like I matter and shouldn’t settle for anything less than good manners and a bit of respect. I’ll keep you updated if that’s ok. Take care. God Bless and hugs to all. . X.
Hi there, thank you for sharing so openly – it’s completely understandable why you’re feeling anxious. Letrozole can really feel like that “safety net,” and it’s a big step when there’s even talk of stopping it. You’re definitely not alone in having these concerns.
I was in a very similar situation – years on hormone therapy, lots of back and forth between specialists, and then the question of “what next?” came up. What helped me was focusing on what I could do to support my body, especially around inflammation, joint pain, and overall wellbeing.
One thing that’s made a difference for me has been taking organic turmeric capsules with black pepper and ginger. Organic Turmeric Capsules with Black Pepper and Ginger – Turmeric Australia
I originally started them to help with stiffness in my hands and knees (a side effect of Letrozole for me), but I’ve stuck with them because they really do make me feel more comfortable day to day. It’s not a replacement for medication, of course, but it’s been a gentle, natural way to keep inflammation down and help me move easier.
As for your questions on supplements that mimic letrozole – there isn’t really a natural “swap” that works the same way as prescription aromatase inhibitors. But I’ve found that lifestyle things like keeping my weight steady, eating more plant-based foods, and adding in turmeric daily have helped me feel like I’m actively doing something positive for my health.
If your team does suggest stopping Letrozole, maybe think of it as shifting from medication support to more “whole body” support. You’ll always have a say in the conversation with your doctors – it’s your body and your peace of mind.
Sending you lots of strength for your upcoming call. Whatever happens, know you’ve got options and you’re not powerless in this.
Hi and thankyou for your advice. I saw my GP yesterday and she says she’ll monitor me every 3 months with regards to cholesterol if I take the letrozole. I’m still waiting for the breast nurse to get in touch. I left a message on Tuesday but I know Wednesday is a busy day for them. I don’t know if I will start taking letrozole again as since I stopped I feel so much better physically and mentally. I’m able to walk better and even do short runs without the breathlessness and tightness in my chest too. For 2 years and 2 months I took it every evening and for 1 and half years I felt not too bad and was prepared to finish the 5 years. The not being able to even finish the housework or carry the shopping without getting breathless was quite frightening and not being able to do my full daily walk was impacting my mental health. I know research has shown that exercise is important to reduce cancer risk and recurrence as well as reduce the risk of my chance of having another stroke so I think I’ve made my decision. It took a lot of soul searching and long discussions with my husband but at my age, like some others have said, I’m putting quality before quantity of life. It’s not a decision to be taken lightly but with my history and my family’s history of stroke and cardiac events I think for me, the choice will be for me not to continue taking it. I don’t smoke or drink alcohol, I’m a vegetarian, have been since I was a youngster and have always been active. I can’t bear the thought of having to slow down just yet. I’ve been put in touch with someone like me by Breast Cancer Now and I can’t thank the people who have helped me here and behind the scenes enough for their advice and support. I look at this way, I’m grateful for everything I can do, mundane things in life that are often taken for granted like putting the kettle on for a cuppa, giving someone who needs it a hug, just tending the garden, things we automatically do that some people can’t do and would love to be able to do. Once again, thankyou for your post to me, it’s much appreciated that you and others have taken the time to help me. Take care. God Bless. . X.
Glad you have come to decision. Obviously perhaps I’m a little biased as I already stopped my AI but if I were your age with the side effects you have been dealing with and the other health issues that have already affected you and the risks to your general health from continuing I believe I would have made the same decision . Wishing you all the best xx
Thankyou Joanne. I would have liked to have been able to continue but I had to weigh up all the pros and cons. I hope my decision doesn’t affect anyone else. It’s something I agonised with for a long time. It would have been nice if the breast clinic had got back to me but I expect they’re busy. Best Wishes. . X.
Everyone has to weigh up their own particular circumstances - we are all more than our cancer and for some of us there are other health conditions that may have to take priority . This is particularly true if you are older and / or very low grade . You’ve made the most considered decision that you can - anyone who reads your posts should understand that it’s not something you did lightly .xx
. I’m going to try the G.P. Hubby says he’ll go with me this time and I’ll also take advice and speak to the breast care nurse. All I want is someone to give me all the information on my situation so that I can make an informed choice on which path to take. I do have a predict score of 2% survival with letrozole, we don’t have onco scores where I am. I was told by the breast clinic that the predict was mainly for clinicians so that they could decide on treatment. I don’t know if that’s correct as I’m used to getting all different views. I was lucky that the stroke just made me partially sighted and I’ve learned to adapt to that. It does run in my family, people are surprised it happened to me as I’ve always been active and thin. Unfortunately just recently one of my Sons has been put on the same medication as me due to high BP and cholesterol even though he’s quite young and also active and watches what he eats. So anyone here who takes letrozole, please don’t think it will happen to you. Letrozole did not cause the stroke, It happened to me when I was 63 way before I had breast cancer. I don’t want anyone to be frightened because of my posts. Take care and God Bless. X
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