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Brain mets from breast cancer

12 Jan 2018 22:26

I wonder if anyone can share their experiences. My mum has recently been diagnosed with multiple brain mets - she had breast cancer in 2014 for which she had a radical bilateral mastectomies and chemo and radiotherapy - she then had a recurrence in March 17 and we found out it had spread to her adrenal gland and nodes in her chest - she had just finished chemo and is having 3 weekly herceptin injections when she was rushed to hospital and we found out that it had spread to her brain. I am absolutely devastated and feel so hopeless / they have offered her 5 sessions of radiotherapy to control her symptoms but told her prognosis is poor. If anyone has experienced anything similar and would be prepared to share that experience I would so grateful as I feel so hopeless xx

Re: Brain mets from breast cancer

13 Jan 2018 00:44 in response to Tillyh

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 

Re: Brain mets from breast cancer

15 Jan 2018 23:31 in response to Tillyh
I don't have the experience yet but I know what your going through and the uncertainty of what's to come is the most frightening, my mum was diagnosed with secondary breast cancer nearly 7 years ago it had spread to the lymph and bones, and during this time various other areas she has had several chemos hormonal drugs but just before Xmas she had back pain took them 2 weeks to do a thorough MRI and over 4 weeks to tell us it was now in the back and brain she has been having radiotherapy on back and brain this last week and has 2 more sessions left what treatment is available after, not a lot, all I have been told is prognosis not good, im 38 my son is 8 and the thought of her deteriorating before our eyes losing her that way is what's keeping me awake at night, no-one can tell you what to expect just what might, will she have seizures, will she lose her memory her mobility, her ability to speak, eat, and how long will they be like this for, my mum has no husband, no partner so it's difficult that there's few people around to help, u feel helpless and everything is totally out of our control, it's like a nightmare your waiting to wake up from, I keep telling myself she is alive today and hopefully will be tomoz, I've booked a couple nights away by the seaside in February and just pray she will.still be well enough, I've never wrote anything on a forum like this before but I just wanted you to know your not alone in this, there's many of us struggling at the moment xxx

Re: Brain mets from breast cancer

18 Jan 2018 10:53 in response to Tillyh
Been through something similar. My Mum went to hospital on in Feb with severe headache, she was diagnosed with brain mets and we later found the primary was bowel and adrenal gland. She had surgery for bowel blockage and recovered from that quickly. She had got the all clear from breast cancer in June 2016 so it was a new primary. They controlled it with steroids and she started the radio therapy but deteriorated very quickly, she went from managing fine to passing away in less than a week; she was only in hospital one night. I am thankful for no pain, no confusion, no suffering; right up until the end she was determined. I miss her more every day - my advice - spend as much time as possible with her and be there, take pictures and never forget to tell her how much you love her.