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Hi, most of my detail is on my profile but I’m 39 and have secondary breast cancer to the bone which has now crossed into tissue in spine and now somewhere at base of brain/top of spine?? I dont really know! Having being told I have tumours and lesions in my brain and that I’ve 6 months to live on a Friday afternoon has been a bit brutal after a year and a half with bone mets to be honest.

I got started immediately on radiotherapy to my spine last week and finished those 5 sessions. Now they want to do 10 sessions of high dose radiotherapy to my brain starting next week and I’m absolutely terrified! Is this going to destroy my brain and change me?? This can’t be good for the brain but then I’ve little to no choice. It’s either leave it alone or do the radiotherapy?? I’m so scared that I feel like trying to end it all- that there’s no hope. What’s the point? I don’t know what to do with myself or what to think. I’d love someone to tell me I’m freaking out for no reason but it’s my brain!!! I feel like pulling out and not doing it. Can anyone help at all? I’m not sure what to expect.

Thanks

Jo x

  • Hello Jo,

    Like you I have had secondary brain cancer and have had surgery twice on the same tumour. I have also undergone stereotactic radiosurgery also known as cyber knife. Is your radiotherapy whole brain radiotherapy or stereotactic radiosurgery? If stereotactic radiosurgery (SRS) has not been mentioned then ask about it, it's not available everywhere but check 

    I completely empathise with how you're feeling, I was terrified, the brain is who we are. Hang on in there, there may be some hope.

    Any questions ease ask.

    Best wishes

    Martin

    Hope is my superpower
    • Hi Martin,

    They said Stereotactic wasn’t an option for me? I seem to have tumours and lesions but with a bunch of again new oncologists staring at me, it’s very difficult to get any explanations to things! They just say whole brain radiotherapy is the way to go??

    Thanks

    Jo x
  • Hi Jo,

    Sorry I haven't replied earlier, I've been in chemo and having a port line fitted this week. I'm so sorry to hear how difficult it is for you. There's not many of us on here that have had this experience with the brain. Your in a very challenging situation and I don't know what to recommend. Being confronted with a new oncologist and team is not helpful either.

    I wonder if it might help you to speak with someone on the Macmillan helpline, just to chew it over and hear what they have to say. It's does seem your options are minimal but another ear might be of some support.

    I really hear your fears, I had my brain MRI scan results this week and the anxiety before was hard to manage. I'm fortunately ok at the moment but the dread is always in the background.

    I think right now support from Macmillan might be worthwhile. I wish I could be more helpful.

    Thinking of you

    Martin

    Hope is my superpower
  • Hi Martin,

    Thank you- I did ask about it and he said it wasn’t suitable for me- i had to have whole brain and 10 sessions. And he’s said this is the one treatment and then there’s nothing they can do if it comes back so I’m terrified. I think this is it and I’m panicking- I don’t want to leave my family - I’m the one who does everything for them but I don’t think there’s a choice now. I don’t think it sounds good and I think that’s me.

    Jo x
  • Hi Jo,

    Just want you to know I'm thinking of you and your family.

    Martin x

    Hope is my superpower
  • Hi Jo, 

    I am on here quite regularly for help and advice/support with regards to my dads secondary brain cancer (primary was bowel). My Dad finished 10 sessions of Whole Brain Radiation 2 weeks ago, so it is still very fresh. During the treatment he was up and about and generally ok. It has only hit him this week and his effects have been extreme fatigue, he has been sleeping more than usual (I guess the hot weather didn’t help this) and he is losing his hair. The tiredness is extreme but it has not impacted his memory or speech as yet. 

    i am not sure if this will help you but I just wanted to let you know of our experience with this. 

    We have started him on CBD Oil therapy which is meant to help. This is not medically prescribed and I am not a doctor but I have done a lot of research and testimonials of people who have benefitted from an alkaline diet and CBD oil so at this point we figure it is worth a try. 

    Sending all the strength and positive thoughts your way. 

    danielle x

  • Danielle,

    Thank you so much for your reply. Can I ask did your dad come off all treatment or is he having chemo as well?

    I'm having chemo for the rest of body. Paclitaxel in 3 sessions instead of one big session as they are saying it’ll be easier on my bloods and hopefully I won’t miss a dose.

    I‘m not sure what to do.

    Jo x
  • Martin,

    Thank you very much! Xx

    Jo x
  • Hi Jo

    Dad starts chemo on Tuesday actually it’s going to be over 3 months to kill off any potential rogue cells elsewhere. They have warned him his immune system will be extra low. I’m not sure what the name of his chemo is but I can find out. 
    He is back on steroids for swelling to his brain which are helping a lot. He finished Whole Brain Radiation three weeks ago  and walked one mile with me today. I know each persons case is different, we don’t even know if the radiation has shrunk anything yet, BUT all I can say is he is walking, talking, eating and is still my Dad so although it is far from easy I am confident you won’t ‘lose yourself’ so to speak if you go for it. 
    I am so sorry this is a decision you are faced with. Sending you so much positivity and strength xx