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New to the forum - my mum has incurable neuroendocrine cance

Abbiew
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Hi everyone

 

My 60 year old mum was diagnosed with triple negative breast cancer that spread to her lymph nodes about 5 years ago. She had an operation and chemo and radiotherapy. It was awful, and then it came back about a year later and they removed her breast. They then found she had a neuroendocrine cancer in her bowel. It was a completely different cancer so she was just super unlucky! She had a masive operation because it had spread more inside than they expected. Now it's returned and has spread to her abdomen, liver, remaining breast and in the bone in her arm and shoulder. They've said they can't cure it now so will treat it until she dies. They haven't been able to predict life expectancy yet until they do more scans in the summer to see how it's grown. She's having injections each month rather than chemo. she said she feels great having had them, which is much better than chemo as that made her feel terrible. 

 

I'm struggling to deal with doing life "as normal" in the knowledge that my mum is dying. It's hard to know how much I should be doing right now when we have no idea how much time she has. They say her cancer is slow growing, but it's never felt very slow growing to us! My fear is that we just come out of lockdown and we find out she only has a few months to live. 

I find the concept that she's dying slowly really hard. We lose little bits of her along the way and don't notice until they're gone. I realised the other day that I'll never see her with hair again, and there was a time that I last saw her with her hair. That's just a silly thing. But grieving for the person while they're still alive is so sad. 

 

I've read a few other people's stories today which brought tears to my eyes, but found solace in the fact that there are other people going through this too. It's such a cruel illness. Hope everyone going through it is managing, it's hard with lockdown too. 

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    Hey Abbie,

    I'm really sorry to hear about what you're going through with your mum - it must be really difficult, especially after she has come through a different cancer before. 

    Your message resonated with me as my mum (also in her sixties) has also been diagnosed with incurable NETs quite recently. It has been difficult, as we recently found out that part of the cancer is likely to be more aggressive, despite previously being told it could be slow growing. She had been having injections too, which didn't do much to stop the more aggressive part. It was upsetting as reading about NETs online when we first found out, it seemed like they are usually 'better behaved' than other types of cancer and can be managed for a long time.

    I really hope that's the case with your mum. For mine, the injections didn't really help her feel that much better so I would say that if you notice any deterioration you could push to get a scan done more quickly than the summer, just to confirm that it is slow growing. If it isn't, I guess it's better to know sooner rather than later as I've read chemo can be quite tough and it can help to be fitter going into it.

    It is really hard to deal with during lockdown. I was lucky enough to be able to move last year to be closer to mum once I found out about her illness as I am working from home. I'm glad to have done that as you're right, you never know how much time you have and it's good to spend as much time as possible and make good memories. Definitely FaceTime or get a Portal if you can to be able to chat lots even if you can't be there in person and let her know you're thinking about her.

    Really hope that the doctors are able to manage your mum's condition :)

  • Offline in reply to gingerbeer21

    Thank you. 

     

    Sorry to hear your mum is in a similar situation. Thats confusing that part of your mums cancer is more aggressive than the rest. Thats sort of what we were told too, that they were slow growing and she could live with it for a long time. But its spread like wildfire for my mum.

    When did you get the diagnosis? Will they try other treatments where the injections arent working? 

  • Offline in reply to Abbiew

    We got the diagnosis about five months ago, and before that didn't even know she had cancer at all. The doctors took a while to identify it as NETs and thought it may have spread from the breast or bowel or somewhere else to the liver where it was picked up. It was called Cancer of Unknown Primary at that point. 

    They still don't know where it began but are confident it is NETs now. It is confusing that most of it is slow growing but part of it (the part which is causing problems) is aggressive.

    She will start a round of chemotherapy now which is aimed at shrinking the aggressive part of the tumour. 

    From looking back on what I've seen so far, I would say judge from your instinct how fast the cancer seems to be spreading and take it from there. We were told it could be slow, but mum was starting to feel more unwell quite quickly (e.g. she was driving herself around and walking around the shops in town, but within a few months was struggling to get up and down the stairs.) If it seems like her conditon is deterioriating then perhaps it's not as slow growing as they say - but if she seems to be feeling better and more active etc with the injections, then that's a sign to be hopeful and perhaps they will be able to manage it for a long time. 

    It is really hard with lockdowns and travel bans to be dealing with everything. I hope you've got people around to support you 

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