Brain metastases experience?
Hello, my name is Charlie. NHS in the UK.
My mum (42) this year has been suffering headaces, weakness on her right side, balance issue, vision and speech. We kept going to our GP but she kept brushing it off and kept prescribing stronger and stronger pain killers for the persistent headaches. Granted she has a history of BC in 2019.
After 4 months she had a CT scan which showed I believe two lesion in her brain.
roughly 3cm and 1.7cm at the time. A couple of days later she had a emergency brain surgery.
They resected 80% of the 3cm tumour. But it left her with mobility and speech problems. Her mbolity and speech has gotten way better now than before but with slight defects with her speech and mobility now. Still can perform independent task but just less and paitence when speaking with my mum.
About a month and a half inwards with her recovery. They diagnosed her wish re-occurent breast cancer HER2+ to just the brain. They a planned to do gamma knife radiotheraphy (GOOD NEWS!).
But a month after her diagnosises (at this point roughly 3 months post-op) they did a mri scan and now the tumour has fully regrown and spread(?), we were too shocked to ask about it. BAD NEWS no more radiotheraphy. Now it's systematic theraphy.
We are extrememly frustrated with the NHS because not only is everything tacking months to happen for such a serious and complex issue. But we were ment to meet with a breast CNS nurse and oncologist like a month ago but they never contacted us (great).
After we filed a complaint to the NHS things started to speed up with our oncologist appointment happening in 3 days and our lovely breast CNS nurse got in contact with us. But I can't help and think this process shoudl've been a lot quicker.
My mum haven't had any treatment for 3 months… 3 months. It's honestly astounding to me.
Now we are getting a second opinion from a well respected oncologist in our area.
My question is, how long did it take for you guys to have between treatments?
Sorry if I sound extrememly ungratful but I can't help but think the team is moving to slow and with no communication.
Comments
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@charlie4 - Hi, and welcome to Breastcancer.org! We’re so sorry that you and especially your mom are going through this. Your frustration is absolutely valid. Delays in treatment and poor communication are especially hard to cope with during something so urgent.
It’s good to hear things are finally moving and that you’re getting a second opinion. You’re doing the right thing by advocating for her.
While we wait for other members' experiences and advice, here are some articles on our main site that may be helpful:
Let us know how things are going. We're all here for you and your mom.💏
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