What the F is happening (Gamma Knife Surgery)

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Hi all,

My mum has recently recovered from bowel cancer, got the all clear about a month ago, then this weekend just gone I took her into hospital with head + back pain plus confusion, and was absolutely blown away when she called later to say they had found a tumour in her brain. 

For the next few days I got constant updates that didn't make any sense to me; the consultant told me it was the size of a walnut, they think it is secondary to either the bowel cancer or the breast cancer she had a few years ago, it is in the centre of her brain and can't be reached for a biopsy, probably inoperable due to location, they will be speaking to neurologist team at southmead. Every day felt as though they needed "another look" at the scan before they could tell me anything, and I was numb with shock ready to try to come to terms with what felt like the inevitable news, and I kept trying to get the consultant to give me some kind of clue about whether we had months, years, or maybe there was some hope but how much hope. She is not a cancer specialist and wouldn't tell me anything more.

Yesterday, after speaking with the team in southmead, we've now been told she is most likely a candidate for Gamma Knife radio something surgery(??). I was asked if I have any questions, "YES!!! LOADS! WHAT ARE YOU TALKING ABOUT" 

I've tried to research it and I don't understand? It sounds as though they're just going to zap the f***ing tumour out of her brain and then she'll be fine? But that cannot be right. I can't sleep, I don't know how to feel, I need a doctor to either say "this is excellent news, you can relax at least a little bit" or "this is some hope but we don't know much yet" or "this is a temporary fix for something that isn't going away". 

Has anyone had an experience similar to this? I would love to hear some accounts to help me understand. All i can find are American websites saying "you come in once, they zap it, then you go home straight away and carry on with your life." It just doesn't make any sense to me.

  • Hi SH123

    so sorry to hear about everything you and your mum are going through. It's such an overwhelming time and the medical profession, with the best will in the world, throw so many strange medical terms at you in such a short space of time! 

    My husband was diagnosed with a grade 4 brain tumour in Sept 2020 so I can empathise with what you are going through. His tumour was operable and they were able to debulk it during an "awake" craniotomy. 

    I have no experience of gamma knife radiosurgery but my own understanding is that its not surgery as we would usually understand it. No incision. Its a highly specialised form of radiotherapy that targets a very specific area. I found some info on BUPAs site that might help explain it in layman's terms (Gamma knife | Health Information | Bupa UK

    I would however recommend that you speak to your mum's medical team and ask all your questions, even if they feel trivial to you. Understanding what they are doing, why they are doing it and what to expect afterwards is so important to helping both of you cope with all that's happening.

    This group has been a great source of support to me over the past year so I'm hopeful that someone here may have some first hand experience of gamma knife surgery that they can share with you. Please also remember that Macmillan Support Services offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available. We also have our Ask an Expert section that may be able to help with some of your more medical/technical questions, but do allow two to three working days for replies from our expert team

    I hope this has been of some help. I wish I had more info to share to help put your mind at ease.

    Stay strong. Stay positive. Sending you and your mum a huge virtual hug.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi there,

    Thank you for taking the time to reply, it's a great help to hear from people who have had a loved one go through something as jarring as a brain tumour diagnosis. I think because she has been on a stroke ward and the consultant isn't a cancer specialist it has been especially frustrating, and hopefully when I speak with the people who will actually be working with her on this, I will feel a bit better.

    I think I'm having a lot of guilt because the fact there is treatment seems like it should be good news but I don't feel good at all! My emotions are shot through and I keep feeling really angry. 

    Thanks again for your words x

  • HI.

    I hear you. It's very frustrating. You just want answers now. Answers you understand.

    Don't be too hard on yourself. All these emotions are perfectly normal. I think in the past year I've been through them all and then some. Another group I have found very supportive is (+) Carers only forum - Macmillan Online Community. You might want to drop by there. You'll be sure of a warm welcome.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Sh123

    So sorry your Mum has to have another procedure but Gamma Knife is one f the better ones , I went in myself three years ago at Bristol.

    She will have an MRI to map the area then go again to the scanner to have it treated . It is painless I was in the scanner for about an hour .

    Back home the same morning a MRI three months latter all the  gone and have not returned since.

    Hope that helps.

  • I’ve only just seen your post and hopefully by now you will have had some answers but I can help regarding the gamma knife surgery.

    It is not surgery at all but a type of radiotherapy which uses very small pencil beam of radiation to treat the tumour.

    Your mum will have a scan on the day or treatment and also a frame attached to her head which clips to the treatment couch to allow her to stay very still.The treatment is long 1 to 2 hours depending on the treatment plan which is created for her, but she won’t feel anything and it is ver in one session.The main difficulty is staying still but she will be monitored at all times by the radiographers.

    I am a ex radiographer and have treated patients on Gamma Knife.It’s a very successful treatment......Martin Kemp of Spandau Ballet had this treatment and I’ve heard him talk about his experience of it.

    Hope this helps

  • Thanks everyone for your responses. Unfortunately I was right to think a cure sounded very unrealistic - the neurologist explained that the treatment is to buy her some more time, but very unlikely to take it away completely. 

  • Sad to hear. At least it’s a painless way to buy some more time with her. I hope all goes well.

  • Hey hun

    Big hugs to you! My husband had this on the secondary tumours in his brain. The name of it sounds much scarier than it was in reality.

    We had a few pre treatment visits to Christies to prepare for this treatment. Basically these were with the specialist radiographers who took a number of mri scans to pinpoint the locations of the tumours. They make a mask which covers the face and mark the locations on this.

    Treatment took place over three sessions of stereotatcic radiosurgery. Which basically is a very focused treatment that only targets the tumours and not any surrounding healthy brain tissue. From memory they use multiple rays from differing angles all pointing to the centre of the tumour. My hubs experienced zero pain or felt anything during the treatment or indeed afterwards so please dont panic. The biggest impact was from the high dose steroids as he didn't sleep well at all. We've learned from this and steroids are now taken in the morning so his sleep is better than it was. 

    It had taken six months for the swelling around the tumours to reduce and the most recent MRI has shown a reduction in size for one of the them which is positive. They continue to monitor regularly to review.

    Hope this helps and alleviates your worries a little. X