I don’t know if this is the right place to ask, but can anyone tell me whether after the 5 years of aromatase inhibitors, if there’s no recurrence and you come off them, do your joints, hot flushes, cognitive issues etc go away so that you feel “normal” again? I’m 59 so I’d expect maybe some menopause issues at that point but I’d like to hope this current severity would reduce.
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Hi,
I’ve just completed 5 years on Tamoxifen, and stopped taking it 3 weeks ago. I’m 56 yrs old and have been told that I’m now post menopausal.
When I first started taking it, I had hot flushes, night sweats, nausea, vaginal antrophy and unable to sleep but those symptoms settled after a few months. I suffer from osteoarthritis in my knees and have had back surgery so get joint pain.
I felt dreadful when I first stopped, headache, tired, hot flushes & night sweats and nausea. My oncologist said it was not normal to get withdrawal side effects but my breast care nurse thought it would take a few weeks for body to readjust. I am now feeling more like my old self each day.
I just remind myself that I was able to accomplish the 5 years on it as so many are unable to.
Good luck x
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Thanks and good luck to you!
(I guess I’m hoping that if I persevere for the 5 years my reward will be that I’ll feel good again once it stops! My risk is supposedly so low that the oncologist said he wouldn’t argue if I wanted to come off them but I feel that he must have wanted me on them for a reason and it’s the only thing I can do to prevent recurrence. I already didn’t drink, smoke, wasn’t overweight, exercised lots before the cancer came so 
)ER+ HER2+ IBC.
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Hi vivalavida,
First of all hello and welcome to the club!
I really do hope things improve after the 5 years.
I’m on letrozole and am almost at the 2 year mark (in August).
I have all the lovely side effects so I can totally relate to your comment. As soon as I get up from sitting I’m like a Neanderthal hobbling about and bent over. The joints free up as I move. I have to say the ankles and knees are the worst and chest/ back a close second at times.
I haven’t been walking much since this heat began so that’s not helped but I really felt like I was going to explode as the temperatures rose!
I am unable to function.
Some people say that as time goes on the symptoms ease or even stop but unfortunately I haven’t experienced that.
I really hope that when I stop I begin to feel a bit more normal
Good luck
Lynn x
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Oh Lynikins, I so relate to the Neanderthal comment. As you say, keeping moving helps but you do have to sit down sometimes!! I’m in the north so have avoided the worst of the heat - you have my sympathy as I still burn up the mattress, then the cool gel pad, then the mattress etc etc all night. I feel like I’ve aged 10 years in 6 months. I have just done 4 months on letrozole and he’s trying me on exemastane next. Told me to have a week off in-between and see how that feels. Obviously glad to be alive and being treated but jeez. Wishing you luck with the 3 years left!
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You know what I feel exactly the same as you. Aged over the last two years well actually three as all this cancer malarkey started Jan 2023 when I found the lumps
So that year was a right off. I was 60 that April so what should have been a lovely birthday was slightly marred…. Although as you rightly say we are still here and I am extremely grateful for that.
So im keeping August 2028 in my sights
I don’t even know what my predict score was as it’s never been mentioned. I have an appointment with my consultant next month so I may ask.
Be lovely to follow your progress so please keep in touch and let us know how you get on or even dm me
Take care
Lynn x
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That really sucks about your big birthday year. We had to cancel our big holiday for my husband’s 60th birthday. I’m grateful mine was caught very early on a routine mammogram. Doesn’t make living with the rest of it much easier though! People think once you’ve had the surgery and radiotherapy everything’s normal again and it really, really isn’t 
Hope your consultant appointment goes well. You’re almost halfway through the 5 years now and at least you’re sticking with it! Thanks for your kindness. Hopefully ‘see’ each other again on here!
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I found my lump on my 70th birthday. Dread to think about aging another 10yrs in months . Cancer sucks !
That’s so rubbish, smak. Hoping you’ll fare better on the meds (I think some people find them less miserable than others). It certainly does suck.
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Can’t help overthinking but I guess that’s normal x
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Hi to all. I’m 52 and one year in to Aromatase inhibitors . Started on Anastrozole but felt so awful was changed to exemestane which was no better . I really
Thought I was going to have to give up taking It - for all the reasons you’ve all mentioned. Been on tamoxifen since May and although I have side effects they are much reduced and I can live with them . Posting in the hope this info might help someone else . Another bonus is that I have resumed vaginal oestrogen .
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That should
Say
I’m 62 not 52!!
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Thanks so much, annasally. He’s taking me off letrozole and putting me on exemastane. Trying to keep an open mind although I’m not especially hopeful! He was very good about letting me stay on Ovestin. I had recurrent UTI and was in too much vulvar pain to exercise so we figured it was worth a very tiny risk for enhanced quality of life and fitness. (I think recent research is more and more signalling that vaginal oestrogen isn’t absorbed enough to make a significant difference and is protective against infection etc).
Hi vivalavida
I am 58 and on Letrozole 6 months after Anastrozole unbearable. I have Herceptin injections every 3 weeks. I am the same as everyoe who has replied. Joints, 
and Sweats. The Depression and Weight gain are a big problem along side the joint pain. I walk like a demented crab. Good luck with your journey. All I can send is a hug.
Take care
Pj
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Thank you and good luck. I’m not thrilled about the weight gain and low mood either but on we go. Crabs, Neanderthals, any more for any more 
x
My husband says I walk like Paddington bear
Xx
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I’d definitely take that over the others!
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Thank you for the initial question, I’ve been following this thread with interest. I started letrozole August 24, until April I was feeling good. Since then the hot flushes have intensified, bad mood swings, stiffness, really bad back pain, I too feel like I’ve aged years and years. My dexa scan last year showed osteoporosis. Letrozole for another 4 years. Like previous comments, the way i walk bent into a comfortable position. Uncomfortable getting out of chairs, getting into the car etc. I’m so grateful to be here but feel I’m a different person now, physically and mentally. It’s good to know there is light at the end of the tunnel. Well 12.30 off to bed to try and sleep, it can take hours. Night all and thank you so much for all your support.
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The nights are definitely rough, you have my sympathy. I’ve got a dexa scan at the end of the month. To be honest, if that comes back dodgy, I think I’ll have to really think hard on competing risks/giving up on the AIs as I’ve seen the state my mum has ended up in due to fractures.
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