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Living and what to expect from secondary breast cancer to the brain?

Butterfly18
Posted by

Hi, I’m caring for my mom who has been diagnosed with secondary breast to the brain. She had a tumour removed from her brain back in April but sadly the cancer is still there. 

I don’t really know what to expect now my Mom’s  illness is terminal. She has deteriorated quite drastically over the last few months. Most days she is confused or has memory loss and can sleep for long periods of time.

i guess I wanted to ask if any one out there has experienced or is going through the same thing and could offer some advice.  My dad has now taken compassionate leave from work so I am worried for my parents in a financial aspect too. I feel as though we have been given this devastating news and sent on our way. I Have questions, my dad has questions and most importantly my mom has questions that we don’t know who ask 

thank you 

dangerdog
Posted by

Hi Butterfly, 

Sorry to reply without the advice you're looking for, but I just wanted to get in touch as my sister also has terminal breast cancer which has now spread to the brain and let you know that you aren't alone - I have no idea what to expect either. She has some small dots and one larger lump which are all scattered and she's recently had radiotherapy to her whole head, which is a one-time treatment, as well as ongoing chemo for the rest. 

In our experience, going to the consultant with a ready prepped list of questions does help, but I totally get what you mean about coming away and feeling like you've no idea what to do next. We sometimes sit and think 'well, see what the next appointment brings', which probably isn't the best use of time.

Hopefully someone else in the community will provide some more constructive advice but in the meantime please know someone is thinking of you x

latchbrook
Posted by

Hi  and welcome to the online community although I'm sorry you've had to find us

It's quite understandable that you want to find out as much as you can about your mum's illness and how to help your parents. I see that you have already joined the Carers group and I'm sure if you post there you will get lots of helpful replies about caring for your mum.

Another group that might be useful for you to join is the breast, secondary cancer group (link). Here you can share experiences and get support from others whose cancer has spread from their breast to another part of their body. Once you've joined you can post your question by selecting Start A Discussion towards the top of the page.

Your mum should have been assigned a CNS and s/he should be able to answer the questions that you and your parents want to ask.

Another source of help for you would be the Macmillan Support Line. It's free to call, available between 9am and 8pm Monday to Friday and staffed by trained experts. You could speak to one of their welfare rights experts who could tell you what financial support your parents might be entitled to.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

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Butterfly18
Posted by

Thank you Dangerdog for your reply. I am so sorry to hear that your sister has terminal breast cancer too.  

My mom will be seeing her oncologist a week Friday so I have already written down some of our questions. We have in the past done the same thing and thought we will ask or see what happens at the next appointment however I think the realisation has dawned on us that it’s the time in between that goes to waste. My poor mom had a one time session of radiotherapy but that was back in May. 

Hopefully we get some questions answered at her next appointment. 

I really appreciate the fact you have given your time to reply with your support and experiences 

once again thank you 

Butterfly18
Posted by

Latchbrook thank you so much for you reply.

i will have a look at the groups you have suggested.

i will look into my moms assigned CNS and see where we can go from there too 

once again thank you 

Marie89
Posted by

Hi, My mum also has recently got secondary breast cancer and I feel the same, she has recently just been diagnosed with lung mets and is receiving ongoing tablet form chemo . Its like you just have to wait and watch. Have you contacted Macmillan benefits advice ? District Nurse, Hospice team, they will all be on hand for help when at home and can call out and have a talk with you and your family.

Life is very unfair and we have no choice but to get on with it, which is very sad. But there are so many different services out there to help and your mums CNS should be able to signpost and refer you to these amazing services.  You don't realize how strong you are until you have no choice but to be.