I had an early grade 2 stage 1 ductal breast cancer, no lymph node in volvement (3nodes removed) in 2014. Lumpectomy, radiotherapy and letrozole. I have moved into moderate osteoporosis now, hair thnning on top of head and numerous ligament issues, buttocks, shoulder, elbow, coccyx. I changed to Exemestane a month ago after a month break from treatment. I am tempted to discontinue and hope for the best. I have read the Predict research paper and identified my risk. It seems that A.I’s give me 1% greater survival over a 5 year period and 2% if I take it for 10 years. Problem is, I can’t figure out whether this is such a small risk that I could come off it or if 1 in a hundred is a big risk. I am 66 years old now. How do other people make this decision. Sometimes I just want to get of the meds and then I think, well better to have arthritis and osteoporosis and thin hair at least I woud still be alive and not dying of cancer. How do others make the decision - one way or another. Medics simply say that although there is only a low risk of recurrence, and low benefit from treatment, breast cancer is so unpredictable that you cannot be too sure… what to do?
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It’ Emily here from Breast Cancer Care.
It sounds like you have a difficult decision to make, and there’s quite a lot playing on your mind in terms of both risk and side effects. If you’d like to speak to a Breast Cancer Care volunteer over the phone who has made a similar decision, then this is something I could arrange for you.
Feel free to send me a direct forum message with your name and number if you think this would be helpful, and I can give you a call to talk through.
I am in the same position, I did answer but it has not shown up don’t know what happened.
I have lobular cancer 2 lumps removed and then right mastectomy last May.
Started with Letrozole and was so stiff and achey could hardly walk some days, but when it made me so low and weepy was told to stop and have a break.
So was given exemastane after about a month started October last seemed ok at first schedule in hands and shoulders thought I would cope but I 'm off them now for almost a month and feel better think it’s still in my system but now I have that awful decision to make. Surgeon says nine if my symptoms are relaty to medication but I know they are.
I’m 65 and until this was very good for my age, now I feel like an old lady the thought of feeling like this for another 4 years is depressing and I feel depressed now.
I have joined a gym but only use the treadmill as I still have fluid around site if op and it seemed to be increasing.
Exercise is as good as the tablet s Oncologist has told me but how much, can I take that risk, it’s so difficult so I completely understand your situation best wishes, x
Do sorry JAH
Got complete ly mixed up, It’s Binty again replying to you said Emily, doh
Got fuzzy brain aswell as all the symptom except hair loss, take care very best wishes , Bonty x
I am wanting to stop my tablets after nearly 2 years as I feel like an old woman with hip and back stiffness that just seems to get worse. I am 71 and quite active playing golf, gardening etc. I am wondering if my body will return to normal if I stop.
Hi Tili, i have been on Letrozole since April and i feel like i am slowly becoming crippled! It was my legs that pained first but they have eased a little. However i am in absolutely agony with my shoulders. My right shoulder, whoch is my surgery side is the worst. I cant fasten or undo my bra, i cant dry my back with a towel or put my coat on without help!! I said to my hubby tonight that i am even finding hard to wipe my own bottom!!!
I am 51 and have 3 children. I have totally underestimated the effect of every day pain on peoples lives!
I had a bone scan 2 weeks ago wh8ch showed i have arthritis in both shoulders. They say its not letrozole BUT i never had any problems with my shoulders before!!
Tonight i finally read the leaflet with the letrozole and there it is in black and white that a less common side effect experienced by 1 in 100 people is ‘joint stiffness (arthritis)’. I think i am going to have to stop taking it as it really is impacting on my everyday life. I am scared to make this d3cision and totalky understand how you feel xx
For me at the present my feet and legs have less pain but its transferred to my wrists and elbows. They hurt so much that I cant carry a handbag or do any movement without pain.Starting to get clumsy and drop things, cant unscrew bottles etc.As I’m a cleaner you can imagine how difficult it makes things!
Hi Ladies x I had a double mastectomy with reconstruction in November 2014. I started on Letrozole and was almost 4 years on it. The side effects started early on - hair loss, hot flashes and joint pain. But instead of easing they got worse, building up until this last year they became unbearable. I was also suffering from really bad anxiety with constant tummy churning - basically feeling a constant low level adrenaline rush. I got to the point where I was even having suicidal type thoughts. When I say suicidal I was not planning anything - but I was constantly thinking that I don’t want to be here
It was horrible - as you all know, when you’ve gone through BC you really should be making the most of every precious moment!
Anyway I recently had a 2 month break from the Letrozole. For the first 4/5 weeks there was no diffence - then suddenly I felt like a weight was lifted from me! There was such a difference - I felt so well, so ‘normal’!!
Unfortunately my consultant seriously recommended me to continue the AI’s for at least another year - which will bring me up to the 5years. He prescribed Exemastane and I’ve been on these for the last 6 weeks - and I’m now starting to feeling awful again. It feels like the flu - I’ve got constant nausea, acid stomach, cramps, stiff body and I’m absolutely exhausted all the time. I can also feel my mental health going downhill again.
I desperately want to discontinue taking them. I think quality of life is so important and I just want to feel ‘well’ again.
But like you I’m too scared to stop because of the risk of recurrance x It’s a hell of a dilemma!
Appletree tjank you so much for your post. I have been off letrozole for 5 weeks. My shoulders are slightly better but after a week I felt likes huge black cloud had been lifted off me. My onc said it’s acceptable not to go back on them and that is really what I want! Your post has really helped and yes, quality of life is everything xx
Charys thank you too xx
Hi I’m new to the forum, so briefly Im a active 54yr old recently had lumpectomy for a stage 2 ER, 1 lymph out of 4 came back positive. Ive then had oncotype Dx Results which showed I was just in the medium risk zone, chemo was recommended but only 4% benefit to me so after looking into this further I declined on the basis that the risks involved & upset to mine & my families life far outweighed the possible benefits. So now I’ve had 23 sessions of radiotherapy and a zomita infusion & was prescribed Arimadex. After only 3 months on this med I’ve had to stop. I experienced severe pain in my shoulders, arms & hands, both my arms would go numb at night whilst in bed, not to mention the back, knee & ankle pain which was getting progressively worse, I felt like an old woman. It’s been 2 weeks this Wednesday since I took them and I’m still not back to normal, shoulda are improved but my hands are still very stiff & painful, apparently it will take 5 weeks to get out of my system.
So Having read this thread & several others regards to side effects I am seriously considering not taking the hormone treatment at all, they all appear to have horrid side effects which seriously effect my quality of life, really, what’s the point in living longer if you feel like crap & can’t walk.
Think I’m going to look at my diet, lifestyle & take my chances folks.
Hi Di R. I have decided not to take any aromatase inhibitors anymore. I had a good talk with my Onc and breast nurse before making my decision though. My original break from them was due to how bad my shoulders were - I thought that the pain and discomfort from them was causing me to feel low. However, 8 days after stopping them it was like a huge black cloud had gone from me. I hadn’t realised that it was the Letrozole causing this til I stopped them! After explaining this to my oncologist she said my cancer was small, caught early, 5/8 ER+, there were no lymph nodes involved and I had a complete response to chemo - so the benefits of letrozole were minimal. She said it would be perfectly reasonable not to take them although she said there were no guarantees either way. I then discussed things with my BCN, who is always my voice of reason. She said I could try a different tablet and see how it went but she also said my onc would have insisted I take them if she thought it was that important. I realised then that the thought of going back on them filled me with dread and my decision was made. It was completely my decision though and I will not worry about it. I have my last Herceptin injection , as my cancer was also Her2+, on 27th December and that ends 15 months of active treatment for me - please God that will be it.
Before you make any decisions I really think you need to go and speak to your onc and BCN too. Tell them exactly how you are and listen to what they have to say. At the end of the day it is your life that you have been fighting for and you certainly don’t want it to be a thoroughly miserable one.
Good look Di and let me know how you get on xxx
I am trying to make the same decision. I already know the effects of losing eostregen when I tried to stop HRT a couple of times and now, waiting for radiotherably already have serious menopausal symptoms including arthritis. I would love to know what you decided and how are you progressing?
Saw similar percentage of risk reduction if I took hormone therapy 1-2% and that was one factor in deciding not to take it and to focus on risk reduction by changes to my diet and exercise levels.