Hello, 

I'm extremely sorry to be reading about your poor Mum and the hard time you're going through right now. 

Whether I'm of any help to you or not I don't know. All I can do is share my experience with complete honesty. My dad was diagnosed with bowel cancer back in April 2015 it had also spread to his lungs and liver. We was told from the start there was no cure but with chemotherapy it could hopefully stabilise the cancer to stop it growing and spreading and hopefully prolong his life. He was doing reasonably well with frequent check ups with his oncologist. When in March last year he started behaving out of character. My mum knowing full well something wasn't right took him straight to hospital. They performed a brain scan and found lesions on his brain. The lesions were situated in the pineal gland which is supposed to be very rare. Anyways there was a build up of fluid pressing down causing him to become confused and behave oddly. So they had to take him into surgery and drain the fluid from his brain. Initually we thought this may be all that was needed and he would get better. We was wrong. Things went from bad to worse. Prognosis was very poor due to it going to his brain. He went from being my Dad one moment to barely being able to hold a conversation. Every one is different but with my Dad he would hullicinate, became scared of everyone, would cry a lot and would wee himself etc this is all to do with the signals in the brain. He deteoriated rapidly. We was told in May that he was terminal because of it spreading to his brain and he died at the end of August (nearly 5 months ago now). Lets just say cancer going to the brain is one of the hardest things to watch and it is very cruel. I'm sorry if I have caused any upset but I can't and won't sugarcoat it. I'm only 28 and I feel like I've witnessed and experienced too much in such a short space of time. From brain ops, sepsis, strokes, hospice, syringe driver, death all in the space of 4 months. So if you do want to ask further questions please feel free to ask. 

I can't advise you on what to do because truthfully there is nothing you can do apart from support your Mum and family as best as you can. Spend what time she has left together and let her know you'll be holding her hand along the way. As for you, be kind to yourself and don't be afraid to ask others for help if you feel you need it. 

Big hugs x 

Hi, I am in almost exactly the same situation my mum has headaches for two weeks, after lots of hospital and go visits had ct scans and she has lung and brain Mets. She’s on steroids to shrink swelling and her symptoms nearly gone, now two weeks down the line she’s acting a bit odd again, and tremors in hands. She was in so much pain before diagnosis and delirious I’m just wanting advice. We have had mri and pet scan and biopsy these past two weeks and waiting on results. I’m so sorry for your loss of your mum xxx

Hi there. My friend had breast cancer some years ago, was treated and given the “all clear” it has now metasized to her liver, lungs, lymph nodes and chest. Regular scans and bloods were the norm and chemo was successfully stopping growth. Recently she had a massive seizure and was told after a scan that it has gone to her brain. The scan didn’t pick it up as, incredulously, they only scan the torso not the full body even though breast cancer is known to metasize in the brain. At present we don’t know the treatment that will be offered. My point is that if people can afford it then please pay for a full body scan if the NHS refuse. It is not expensive. Therefore, treatment can start before the tumours start causing the seizures which is something I never want to see again.

I could not agree more with what you say. Sadly since my last post my mum passed away - it’s been just over a year since she died and there is not a single day that I haven’t cried and not a second of any day that I don’t miss her and my heart breaks. I feel so angry with the people who claimed to be helping her- it is very wrong that a ct head scan is not performed when investigating metastatic disease. Even more frustrating is the fact that her2 positive cancers are known to metastise to the brain.  I am an advanced practitioner with 20 years nursing experience and I did not know that heads were not scanned- despite us being told that my mother was having a full body scan- she also underwent a PET scan and still this wasn’t picked up. In the October before my mum died I asked her oncologist could she have brain mets as her mood and behaviour had altered, she had gone from being a happy go lucky lady full of fun and spirit to someone who was withdrawn and lacked motivation. I was told NO and that my mum was depressed. When we found out the true extent of her disease my mum lost all faith in those that claimed to care for her. My mum had been a district nurse for 53 years and had worked right up until her second diagnosis. I asked her one day why she didn’t tell the oncologist the things we had discussed prior to her appointment- to which she replied “what’s the point they don’t listen”. To hear someone of my mums constitution say something like this broke my heart. To get to the point (I’m sorry for rambling) my mums brain mets had been there a long time - they were extensive , had she been we been made aware that a ct head was not routine I would have insisted it be done. Despite being told that my mums behaviour had changed this still did not raise any red flags:  had my mum known that she had brain mets I know categorically that she would not have put herself through chemotherapy- she would have opted for radiotherapy to her brain and would have tried to enjoy ehayntime she had left. I feel so very angry and feel that oncology services are letting patients down- the term full body scan implies head as well when this is not the case. I have spoken about to this many of my colleagues including GPS and they all believed that head ct scans were routine for cancers known to metastasis to the brain. My beautiful mum endured unnecessary chemotherapy because she was not fully informed of what wasn’t being done. I would urge anyone in this or a similar situation to ask for a CT head scan, it’s too late for my beautiful mum but I hope that if just one person who reads this does ask for a scan then all of the pain and suffering both my mum and I am going through now won’t have been in vain. It is absolutely appalling that they are not done and oncology services are failing their most vulnerable patients .

I’m so sorry, I’ve only just seen your response. For some reason I’ve not been able to sign in.

I absolutely concur with everything you have said. 

Sadly my friend died exactly a month after her seizure surrounded by everyone who loved her. 

We still haven’t really reached acceptance of her death even though it was expected. It made us realise that even if you know death is imminent it is no easier to bear.

I don’t know what your position is at the moment but send much love to you and your family x

How can you help someone with bad headaches after brain radiotherapy? Thank you

Hi Tillyh,

I am sorry to hear about your mum's passing. I am in a similar situation with my mum having been diagnosed with breast cancer earlier this year to learning in the last few weeks that she had brain mets and that even though she had what we thought was a full body scan there were no scans from the neck up hence the brain mets was missed. I learnt today that she has multiple tumours in her brain all of which were not picked up on until recently. We keep getting hit with news of how the cancer has spread and it's heartbreaking each time it feels like mum can't catch a break! I am having sleepless nights wondering what her quality of life will be following all this treatment for cancer that is incurable and seems to keep spreading. 
 

I felt compelled to reply to you and I hope you see my reply because you mention your mum went through chemo for nothing, why do you say that it was for nothing? I mean would radiotherapy have targeted/ worked for the cancers that the chemo was working on? I hope you don't find my questions insensitive, I would just like to know as we are now in a very similar situation, mum has just completed 6 courses of chemotherapy and now after discovery of the brain mets we are being told she will start radiotherapy.

Take care of yourself and thank you for sharing.