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Letrozole

Nitnatc
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When my mom was diagnosed with breast cancer her tumour was so large, penetrating the skin and was fungating because she had kept it to herself and not reached out for medical help for eight years. She was put on letrozole and over time the drainage stopped and the tumour shrink in size. Fast forward 2 1/2 years and she is in incredible pain - we’ve put in calls to GP, breast care nurses and consultant.
I am considering telling her to stop taking the letrozole for now and just see what happens - he case is a little different as he tumour was never removed so it’s inevitable it would grow back over time, but I wonder how long and surely if the drainage started again she can hop back on the letrozole and it will dry it up again. When she was diagnosed the consultant said her breast cancer is not a type that spreads so I don’t think we would have concerns over spreading.
I just feel right now she has the most awful life, she has become housebound with the pain, not dressing, washing or feeding herself properly. There could be other issue in addition to this but I’m really thinking to get any quality of life back stopping the medication would be sensible because as it stands her life isn’t one worth living as awful as that sounds.
What are your thoughts?

  • Offline

    Hi and thanks for the post

    I'm so sorry to hear about your mom and can only imagine how stressful this situation must also be for you.

    Although you said that you had been in touch with the GP ,nurses and consultant, you don't say whether they have suggested any change in medication, whether the pain is due to the letrozole or whether her pain is currently being looked into in more detail. I'm not sure whether you meant her pain is in her breast or in generalised pains in her body. Do get back to her team again if you haven't heard back as it's important her pain is brought under control and this should be a priority. A referral to a pain clinic can also be made if any current painkillers aren't working.

    Sometimes changing the tablet she is taking(currently letrozole) to another can make a change in side effects, although this isn't always the case. Sometimes a break for a couple of months can be made , but stopping medication completely is something you and your mom should  discuss with the specialist first, as there may be implications doing this that you both  may not be aware of. This may include the tumour starting to grow back and although the cancer may be a very slow growing one, there may be a possibility of it spreading if no treatment is given. There is also no guarantee that restarting the letrozole would definitely help again.

    Have you had a chat with your mom to see what she thinks about her treatment and what her views are? The reason for this is that the specialist may not be able to talk to you without your mom's permission due to confidentiality.

    Sometimes, when people get very down and depressed with pain, they can tend to not look after themselves, and their mental health can start to deteriorate. It sounds like you have tried to get in touch with the GP, but if this is happening with your mom, then it does sound like they do need to see her so a proper assessment of her physical and mental health can be made. 

    It sounds like a very stressful time and I hope you are also able to get some support yourself and have people you can talk to.

    Do give us a ring if you would like to go over any of this and have a chat with one of us here on the helpline - the number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    All the very best to you both and I hope you manage to speak to someone again soon

    Wanda

  • Offline in reply to CRUK Nurse Wanda

    Thank you for your reply.

    The pain is throughout her body and affecting her strength too. 
     

    My mom has now decided to stop taking that letrozole for a while as her quality of life right now is zero. Stranded in a first floor flat, struggling to do things and in pain.

    I did mention antidepressants to her but she said anyone would feel a bit miserable.

    There's also been suggestions of dementia from the paramedic who came out to do an assessment.

    ive chased her blood tests again today, but apparently they have backlogs - yet the referral was made as urgent!

    The breast cancer consultant is meant to be arranging a telephone consultation and the GP some CT scans one they've had the blood results back.

    She has finally today agreed that we can arrange for Carers to carry out an assessment to see what help she needs within the home. She finally had a shower today as we'd been telling her for the past three weeks to have one, but unfortunately she couldn't even turn the shower off afterwards as had no strength.

    I am wondering whether all this is osteoporosis because she was never given calcium or vitamin D to take alongside this letrozole. 
     

    I guess time will tell when somebody somewhere finally gets some results and information to go on.

     

    thanks for your reply.

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