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?
Dear J_A_H
Sorry that you havent received a response yet. Hopefully someone will be along shortly to share their experience with you. In the meantime you may find it helpful to speak to one of our specialists on the freeHelpline, 0808 800 6000. Alternatively you may prefer to post a message directly to our nurses in theAsk Our Nursesarea of the Forum.
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Anna
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Hi J_A_H
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.
Best wishes
Emily
Dear Emily
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
J_A_H
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.
I see this is an old topic but it is present for me now hence my post. Am currently on an oncology approved 6 week break from letrozole due to side effects after taking for 12 months. That break has now been extended to 8 weeks and one day by me. I just cannot decide what to do next. Have narrowed down the options to stopping treatment or trialling anastrazole. Predict 3 shows minimal benefit. Oncology say they will not be discussing it with me, the plan is 10 years of hormone therapy, but it is patients choice. Was hoping for a gut feeling to guide me but nothing doing. Is anyone else facing a similar decision right now and how are those people who did stop hormone therapy feeling with the benefit of hindsight?
I stopped Anastrozole after 5 months - I had a very small early low grade cancer which was tubular and doesn’t normally spread . My Surgeon said from the off that if I didn’t get on my hormone therapy it would be reasonable for me to stop it , my Oncologist would have liked me to try Exemestane but bad discharged me by that time . I’m lucky to be in that position and I’m aware of that . My third post - op mammogram has just come back clear so I’m happy but I get anxious running up to it though I think everyone does to a degree . At a recent support group one of the BCN team mentioned ( I think she thought I was interested in restarting ) that it wasn’t too late - however I’ve been off for over 2 years now and don’t feel like restarting . That’s not to say I don’t have a wobble about it every so often and I worry more than other people do I think about foods and supplements and whether they are going to affect my hormones because I don’t have the extra protection of an oestrogen blocker.
It was a decision I initially made in anger - I had been told the side effects often subsided in 3 months then another Nurse said 6 months then someone else a year . I felt I’d been lied to which I’m now sure isn’t true and after lockdown , then isolating due to fear of getting COVID then because of fatigue from radiotherapy then because my Dad was frail and poorly I wanted my life back .
I also have other health conditions which I felt might be aggravated by the Anastrozole as well as a family history of osteoporosis and various joint / bone problems . When you are low grade as I was the risk / benefit ratio isn’t as clear cut as for someone who is higher grade . My Predict score was done on Predict 2 - hormone therapy improved my odds by 0.8% over 5 years to 1.3 % over 15 years . I’ve worked it out myself on Predict 3 and it’s something ridiculously low like 0.1 % for 5 years which I find hard to believe if I’m honest. In the end I had a talk with one of the BCNs in clinic a few months after I had stopped it - she didn’t try to sway me she mainly listened and was a sounding board while I went through it all and made a final decision.
When I meet other people who are recovering from breast cancer they are nice but I sense an odd whiff of jealousy disapproval or puzzlement every now and then . When I applied for travel insurance I was also asked if I had refused any treatment and because I had been told that it was reasonable for me to stop I was honestly able to say no to that .
My gut feeling is that I’m better being off it but I know I’m good at deceiving myself ! I had a lot stress and soul searching about it before I had the discussion with my BCN and I don’t think I’ll ever be entirely sure about my decision but it’s the one I’ve made . It’s sounds as though you’re taking your time over this which is good . Most of the people I know who seem to be relatively happy with their hormone therapy are on Exemestane . Wishing you all the best whatever you decide . Xx
Dear @JoanneN thank you so much for your long and thoughtful reply which i appreciate very much. Funnily enough i dont worry about mammagrams in the sense that something may be found but i do worry about getting yet another dose of radiation. Sounds like you did the right thing in stopping your hormone therapy if you were deemed low risk. I am deemed high risk hence why i am in such a dilemma as to what to do. Anastrazole is my only option. Tamoxifen is out because i have fibroids and exemesrane is out because i have type 1 diabetes. Love Tulip x
Yes - sorry I did go on a bit . I’m sorry that you can’t try the other options and that you are high risk. I also wasn’t able to have Tamoxifen because of a previous retinal vein occlusion . My BCN did say that she has a couple of ladies who limit their side effects by taking their Anastrozole twice a week or on alternate days instead of daily . It’s not encouraged because nobody really knows how that affects the efficacy of it but it’s generally thought that some therapy is better than none . I have heard a few people who have changed from Letrozole to Anastrozole say that they feel better than they did on Letrozole so maybe worth a try. Xx
Hi,
I am in the same situation. I took letrozole for 14 months. I was tolerating so much knee, thigh and hip pain my Oncologist told me to stop it. I almost completely recovered and can sleep without waking up several times a noght due to hip or knee pain. My cousin is an Oncologist and I consulted him. We agreed that it was reasonable to try Exemestane and if the side effects are too great than stop all of the hormone therapy. I am 70 and had Stage 1.
I started Exemestane on 12/17, 1 week ago. Last night I woke up with pain in my hip/groin are several times. I am really thinking about stopping. I guess I will give it one more week. I was told initially by several Oncologists that quite a few women have to stop hormone therapy. They didn’t seem like it was a big deal. Please let us know how you are doing. It’s kind of scary to go off of them. I didn’t know about the Predict tests, so I will research it. Thanks. Happy Holidays!