Metastatic Brain Tumours following Breast Cancer

Hi Tobie,

im so sorry you’ve had such a ride! It must be so scary.

my husband was diagnosed in Feb of this year with stage 4 kidney cancer that had spread to lymph nodes lungs and brain. He had 3 brain tumours. He had 1 treatment of gamma knife surgery for the brain and 1 round of immunotherapy for the rest of it. After 6 months 2 of the 3 tumours in the brain have disappeared and the largest one is still shrinking and causing no issues. The immunotherapy also worked so well he doesn’t need any further treatment for the time being.

hopefully this story brings you a bit of optimism. I’m not sure if gamma knife is an option in your area but it worked wonders for my husband. 

Good luck on your journey and don’t give up hope.

lou

x

Hi Lou

Thank  you for replying so promptly. I am so sorry to read about your and your husband's ordeal and it reads now that the treatment is working for him - I do hope so.

I don't know where to post this blog as this transition is a recent event.

I have seen any references to gamma knife, but have no idea what this means. I had surgery for one tumour in the cerebellar area which was sucessful (apart from further surgery straightaway for water on the brain). But I cannot get my head around (pardon the pun) is why the cancer has changed it's status from oestrogen to hep positive.Two of my neighbours are doing research into brain cancer and they too are puzzled as to why the cancer can change it's nature.

I try to think of it as a positive;  by which I mean that I couldn't have chemo for breast or bone cancer, but can have chemo for my brain. But I am more concerned that the cancer may affect the cognitive side of my brain and I could lose the essence of me - my speech, my memory, my sense of humour.

When I was diagnosed with bone cancer, I always knew that it was a stepping stone to the next one - but I thought it would be my organs. However it seems that the brain the is new pancreas. I am just so lucky that my GP was on the ball and sent me for a head CT outpatient which resulted in an admission for MRI and surgery 10 days later.

My world has fallen to pieces  and I feel so alone. Not only am I not allowed to drive, but my local bus company has closed its route to my hospital for 6 months, so my only travelling option is taxis - and they are not cheap! I have been protecting my family for so many years now that they see me as a role model, inspirational - but I am so tired of being strong. They have to realise that if the chemo doesn't work, I have 2-3 years. But then how much longer will the chemo give me, and do I want to go through all of that for another year - coping on my own and trying to maintain my indepedence?

I have lots of questions but as yet no answers.

I have a meeting next week with my oncologist and hopefully he will continue to be honest with me. We have a great relationship and I trust him implicity.

Tobie x

Hi Tobie, 

Gamma Knife is nowhere near as intrusive or as scary as it might first sound (although my husband was terrified). 10mg of diazepam sorted him right out on the day and calmed him down. Basically he had a metal plate screwed into his skull in 4 places with 4 injections of local anaesthetic. The holes were only a couple of mm deep just to hold his head in place during the procedure.he has 4 tiny little dots on his head now where the holes were. Next he had a brain scan. Then he was sent back to his room while the neuro surgeon analysed the results. Then he programmed them into a computer and the computer did the rest of it. He was put in a radiotherapy scanner type machine and then he had targeted radiotherapy on his brain. The bed he was lying on moved position after each tumour was blasted. He never felt a thing and even fell asleep from the diazepam. He told me he would do this again. I think the frame was the scariest part for him as it doesn’t sound nice. You can have someone in the room with you for this if you want. 

the immunotherapy he had is also incredible but I am not sure who is and isn’t allowed this as every case is different. 

I would say say you should trust your oncologist, we trust his and he is very honest. Sometimes brutally so. My husband was given 1-2 years in the beginning. And now it’s a different story. I’m hoping for 10 years plus but I darent ask the question anymore. 

A lot of the time it is trial and error and in this case the oncologist clearly never anticipated just how well he would respond to treatment. 

Also, have you applied for personal independence allowance? You can do it over the phone and it’s a weekly payment that gives you up to £150 per week. Speak to the authorities about benefits. There are lots out there. You can also arrange patient transport for hospital trips, they pick you up at your doorstep and drop you off again. 

I never realised how much help was available until I looked into it. You would be amazed. 

Ask your oncologist about immunotherapy or any new drugs on the market. There are lots of drugs just coming out of trials and becoming readily available. Please don’t give up hope. I almost did and I was wrong to do so.

im glad this story has helped the people reading it. This is the best place to go for advice and to vent. It’s ok not to be ok here. I found this website shortly after the awful diagnosis and the stories I’ve read have been so inspiring to me and my husband.

lots of hugs, stay strong and lean on your family for support. I’m sure they would love to help you. 

Lou

xxx

Hi Jason,

i will be sure to update you again after the three month scan. The way it sounds the last one will also disappear but because it was larger it will take longer. He had very little side effects (a headache for a few days) and his seizures went away almost immediately, his arm was affected by the tumours. That has also returned to normal almost immediately. I cannot recommend gamma knife enough. 

The only tricky thing for us now is that if new tumours grow in the same place he can’t have the treatment again. He can have it again if tumours grow in a different spot though. And I asked the oncologist what would happen if they grew in the same place. They told me there are more options available so I’m not worrying too much about it right now. Just taking each day as it comes.......

lou

x

Thanks Lou. Your explanation of a gamma knife makes sense now. I thought that is what I was going to have. Instead they made a plastic mould of my skull (similar to the protection they give to sword fighters) and all I had to do was lie still for about an hour whilst they pinpointed the two tiny tumours and blasted them with radiotherapy. I wanted to fall asleep but was too cold!

This all happened last Friday and they warned me about nausea and tiredness. I felt fine on the Saturday, but since Sunday I have felt muzzy, lightheaded and incredibly tired - but at least no nausea!

Thank you for the advice about PIP but I was one of the lucky ones who had a seamless transfer from DLA to PIP, as bone cancer is incurable. I have highest allowance on both indoors and outdoors. The only benefit I cannot claim is Living Allowance, but that will kick in should I have chemo. I am in the fortunate position of being able to self-fund and so am using a local care agency rather than having to rely on Social Services, who cannot guarantee a time let alone the same person each time.

I think this website is amazing. I initially called myself 'Unbalanced' because I had a partial breast reconstruction which started floating around because I lost over 20kg with the bone cancer. I was told that the implant had to come out and couldn't be replaced because my skin was too thin. Fortunately I had an amazing female plastics surgeon who eventually reduced my healthy breast tp the size of a damaged breast - so I am the proud owner to 1.5 tits and I haven'tt regained any weight!

It's not that my family don't love me - they do. But they cannot provide the support I need because they live to far away and have lives of their own - I have 3 nieces and 4 great-nieces/nephew all under the age of 7. And my mother is in a London care home with severe dementia. I do try and visit her but it is a long and tiring journey, and it is upsetting if she doesn't recognise me. Luckily last week her face lit up when she saw me and I got scolded for not having visited her sooner. Wasn't the least bit hurt, merely happy that she could engage to that level.

Tobie xx

Hi Tobie, it sounds like you had cyberknife, which I had in 2013, for a secondary brain tumour from my kidney primary. I had 3 x 20 mins sessions.on consecutive days

Btw, I've just read your profile. U may want to post some of those questions in the Life after cancer group?

I love it....... 1.5 tits and no weight gain  us women never change. It’s good that you still have humour.

public transport is very slow I agree but an option if you are desperate.

as for your family perhaps you could try to visit them for longer periods? It would be great company for you and family is what it’s all about. It might take away some of the loneliness you are feeling. It’s a difficult one though. My mum lives far away and sometimes logistically it’s just not possible to see each other often so I do understand where you are coming from.

Xmas is only round the corner..... maybe you could plan an extended trip to get together. 

Im sorry about your mum, my father in law also has dementia. He doesn’t know who I am anymore and it’s so hard to watch. 

Please keep us posted on your oncologist meetings. You always have this group when your feeling lonely ️

Lou

xx

Hi again Tobie, Lou's reply echoes my situation. I'm currently visiting my family, who all live several 100 miles from me. So far, I've stayed with my sister n visited n my mum n dad n auntie of 95. Life really IS all about family when u come down to it, isn't it?

My mum has dementia n still recognises me, but who knows for how much longer, hence the visit.

Hi Buttercup

What a lovely name!

I so totally understand about your mother. Mine is 96; she has no mental capacity, no quality of life but unfortunately she is physically very health. I miss my mother and have already been grieving for her. It is just at times like these when one really needs one's family around and involved. My brother is brilliant, but not one member of his family (including my brother) has spoken to me since before I had the microsurgery last Friday. Yes, they have texted - only because I gave them a summary of what happened and I got loads of emojis, but nobody should it necessary to actually speak to me, and I am too proud and stubborn to call them.

It's not that they don't love and care about me, but they just have no idea how hard it is for me at the moment. In May 2018 I had a falling out with my sister-in-law. Not only is she now the matriach of the family, but she too is stubborn and our relationship has been severely damaged (I own up to my own stupid behaviour). However now not only I am not happy staying in their house because I am not made welcome, but also because they have converted the top floor into a self-contained apartment and I can't manage the stairs. Also they have a walk-in shower and I am unstead on my left leg and don't feel safe as there are no grab rails.

I chose to leave London and move to Cambridge in 2001 for very sound reasons. But now that my mother's house is almost empty, I can't even stay there (no bed linen, duvet or towels). But how does one ask for support and understanding without sounding needy?

Fortunately I see my oncologist next Thursday and between us I hope we can work out a treatment plan.

May I ask the nature and current status of your cancer?

Tobie x

Hi Tobie, do see my profile re my cancer - its ups n downs n regular recurrences.

Currently, it popped up again at last scan, but it does that every 2.5 to 3 years. I'm fortunate I have kidney cancer, which is indolent, ie basically lazy ( like me)My next scans r due in early Oct, so I'll try n not fret again till then.

Re being stubborn, so am I , but try to use it positively, eg my oncologist said I was an "anomaly" , by which I reckon he probably meant ( statistically) I ought to be dead lol. But no way Jose - I'm not ready to turn my face to the wall yet.

Don't  deny yourself support by being stubborn.

Sometimes being vulnerable/ needy is actually a way of showing strength ironically.

Good luck re seeing the oncologist n getting a treatment plan sorted .