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To take aromatase inhibitors...or not?

sugarpuff
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Hi all

I had breast cancer diagnosed (thanks to a mammogram) in June 2011, had 2 ops in July/Aug to remove the lump (1st one they didnt know if they had taken a wide enough area...turned out they had!) and all lymph glands, followed by 6 Chemo treatments (Taxotere / FEC) and 4 weeks of Radiotherapy, all finishing around March 2012.  To be honest the chemo and radio was not nearly as bad as I had expected and I felt I had sailed through it.  Yes, I lost my hair, nails were awful and had miserable days, not to mention regaining all the 2.5 stone I had just lost after a mammoth diet....but still, not so bad!

However.....

I was started on Aromasin and had awful pains in my feet, burning sensations if I walked too far, and I felt as if I seized up when I sat or lay down for a while.  It wasn't consistent, I could sit for only a minute one one occasion and it would happen, and then another time I would be ok.  It would take walking about 30 yards before I stopped shuffling like an old woman and I could walk normally.  I bought a treadmill to use at home as I had no stamina and I thought it may help, but my feet just hurt too much if I walked for too long. I also started to suffer from Carpal Tunnel Syndrome in my hands.

I taked to my doctor and he changed me onto Exemestane in about June 2012 to see if it was any better, but it seems the same.  I have since had 2 ops for Carpal Tunnel, one in each hand, and today I am off to see about yet another op as I have developed a 'clicking' thumb in my right hand which is vary painful. I have pains in my left thumb and wrist too, can't hold anything heavy without pain, and have no grip whatsoever.  I have a pain in my right hip and right ankle now too.

Now I haven't written all that for sympathy!  I have read various posts on here about Exemestane / aromatase inhibitors and it sems as if many people have the same problems I am experiencing.  This drug is obviously very good and I know that I should bear with it, but my questions are:  is the pain in my hands and possibly other joints something that goes after you stop taking it?  Does the drug cause long term damage?  I can't bear the thought that I may have to undergo op after op after op over the next few years.  I still work and have lots of things I like to do and it is severely inhibiting my life.  My husband and I are renovating a property (a long term project) and I cannot lift bricks or handle anything heavy anymore as it hurts, and I am also concious of further damage to my hands.

Is there anyone out there who has finished their 5 year stint who can advise me?  All the advice from the professionals is to bear with it  if I can - which I know I should, but I am in so much pain everyday and  becoming very low about it, and I don't want to continue taking pain killers ad infinitum.

I don't know what to do.  Have another op? Stop taking the drug? Bear with it and possibly ruin my hands and have to stop work? (I am self employed).

Help!  Any viewpoints gratefully read!!

  • Offline in reply to Hetty_B

    Hi

    sorry for the late reply / I have only just been notified of your post!

     

    I'm sorry to hear about what you're going through.  I eventually told my oncologist that I would rather risk the cancer coming back than continue with all the side effects. He then put me onto Tamoxifen, saying it could take a couple of months for the effects to disappear.....but within a couple of days I was hugely better. It made me realise quite how low I had been on the the other drugs, that I would be happy to risk everything to make the pain stop.
     

     I am now 8years on and am still on tamoxifen, as my oncologist told me that research now shows there is a benefit for being on it for up to 10 years. My weight has gradually climbed, despite constantly watching what I eat, but hey - rather fat than dead eh?!! My feet have been permanently affected and I now cannot wear heels as it is too painful, but I can live with that...after all I'm no spring chicken now.  But life is good - so much better than it could have been.

     

    my suggestion to anyone who is suffering the same pains in their hands and feet would be to go onto tamoxifen. It may not be your oncologists preferred drug for you, but you can still have a life!!

  • Offline in reply to sugarpuff

    It’s worth going to the NHS website called Predict. You enter details of your cancer and you can see your life expectancy, depending on taking medication or not. My nhs oncologist used this site to show me that risk to my life expectancy over 10 or even 15 years was only improved by 1% if I took Letrozole. Mine was an early breast cancer grade 1 with no nodes affected and a successful lumpectomy. You can see your own risk by putting in your own details. Reading about side effects, I am deciding if the 1% advantage is worth it. The data doesn’t however tell me the risk of cancer recurring - just my life expectancy, which must encompass recurrence I suppose. I think I will talk to my oncologist and say I’m not taking the Letrozole...

  • Offline in reply to susanmanchester

    Please see my post below - I’m Wendy22.  

    We each need to clinically assess our risk before we take these drugs. 

  • Offline in reply to wendy22

    Yes we do but most of us are not so lucky to have grade 1 stage 1 cancer and the people best placed to assess our risks are oncologists . AIs reduce risk of recurrence 

    by a very significant amount over time - up to 61 per cent . Why do you think we are now advised to take. them for 10 years ? It isn't for fun . I would rather put up with creaking joints and a bit of tiredness and still be here . The best remedy is taking more exercise and eating well not stopping life saving medication . To suggest it is optional is actually very dangerous because 

    for many it really isn't 

  • Offline in reply to wendy22

    Hi Wendy, can I ask what you decided and how you are. I have declined the letrozole and same stage as you. I already have joint problems and do not want to fast forward myself into old age. My husband supports my decision and I feel it's right for me but I know if it comes back I'll blame myself. I have completely changed my diet and am hoping maintaing a healthy weight, diet and exercise will do the same thing. 

    Jane x

  • Offline in reply to JaneRu

    It doesn't you need to take the Letrozole as I have done and millions of others it saves your life no amount of broccoli makes up for it 

  • Offline in reply to suzemanc

    Suzemanc, for my own diagnosis the additional benefit of me taking letrozole is 1 or 2%. It's a personal decision which I have considered very carefully based on my current quality of life and other factors. The downsides, for me, do not seem to be worth the very small gain. Plus you can take letrozole and still have a recurrence. I appreciate it's a personal decision and for those that choose to take it, it's their choice. 

  • Offline in reply to JaneRu

    Yes you can still have a recurrence but with no oestrogen in your body the chances are miniscule and it is not recurrence which is the problem that can be dealt with by further surgery - it is metastasis to other parts of the body which Letrozole also prevents. I have been taking now for 30 months and prescribed for 10 years . I have no bad side effects I go on long walks eat well etc etc. I also have more peace of mind taking one daily tablet ( plus bone strength gtener ) which has saved millions of women's lives . It is no big deal and I want others to know that . Also our oncologists do not recommend we take these drugs for their amusement . 

  • Offline in reply to wendy22

    Thank you Wendy so much for this tip about the NHS Predict tool. My partner is trying to decide whether to follow her cancer care team who have prescribed a 5 year course of Letrozole. She is alarmed by the common side effects of these drugs and would rather a good quality of life than longevity at any cost. The results from the Predict tool are extremely helpful and she is going to ask her oncologist to go through it with her at her next appontment. Thank you. Your tip has helped us both get a good night's sleep after weeks of worry and indecision

  • Offline in reply to Kit51

    Best wishes to you and your partner Kit51. I believe science and data are what we need to base our decisions on so NHS Predict helped make my decision to avoid Letrozole for the small benefit of 1% it offered me. 
    Two years on and my mammograms and recent MRI scan are clear and I keep up my long walks and feel fit. 
    You are right to discuss this option with your oncologist and I'm pleased to think I've brought that option to your attention. 
    All the best,

    Wendy22

     

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