New brain tumor diagnosis

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Hello everyone, I've recently been diagnosed with a Brian tumor. I've had symptoms for over a year now like headaches going all the way down to my right eye ect. Ive had mri scans which has show a tumor. I've seen a neurosurgeon and he has said it needs removing ASAP. I have to be awake for surgery. I'm just wondering I need some positive reassurance as I'm really really struggling at the minuet about the qhole surgery 

Thank you

  • Hi Gs1723, I'm sorry I can't give you any advice but, having just read your post I felt I couldn't go past it without saying how sorry I am that this has happened to you.  It must be incredibly tough.  One thing I can recommend is talking to the MacMillan nurses on the helpline.  They are very helpful and kind and can give either medical advice or emotional support.  Good luck, and I hope the surgeons can remove your tumour or that further treatment will help reduce it.

  • Thank you for replying springviolet it means alotHeart️ it's such a scary thing to hear and go through xx

  • Hi

    a warm welcome to the group. So sorry to hear your story. Not knowing all the facts etc is far scarier than knowing what you are facing.

    I'm supporting my husband through his stage 4 brain tumour journey. His surgery was an awake craniotomy but ahead of it the surgical team talked him through it all in detail. There was also a pre-op meeting with a speech and language therapist who ran through a series of questions that she would then repeat during the op itself to gauge how he responded etc. He was put to sleep for the start of the surgery then "wakened" for the tumour debulking part then allowed to sleep for the surgeon closing the wound. 

    I looked up some generic info for you on the main website that might help What is a craniotomy? | Macmillan Cancer Support

    Please also bear in mind that there are dozens of different types of tumour so try focus on the facts as you have been told them rather than the "what ifs". Stay away from Dr Google. He's a scary dude! Again, here's some generic info for you Brain tumours | Macmillan Cancer Support

    Ahead of your next appointment can I suggest that you write down all your questions/fears/concerns and take the notes with you to the appointment. If possible perhaps take a friend or relative too. These early appointments can be quite overwhelming. The notes will help to keep you focused and make sure you don't forget to ask something that's important to you.

    In our case, my husband was diagnosed in Sept 2020. We got the tumour pathology results about a week after his surgery. It wasn't the news we hoped for but the team answered all of our questions, set their expectations then referred us to the neuro-oncologist who arranged a 6 week course of oral chemo/radiotherapy in combination.  My husband coped really well with all of it. He declined all further treatment after that but, despite now being the palliative care phase, he's still out running ever day. 

    This is a safe and supportive community so please reach out here anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    I hope this has helped a little.

    For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong and stay positive.

    love n hugs

    Wee Me xx

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

  • Hello wee me thank you so much for your reply. I hope your husband is OK and keeping strong. How many appointments did your husband have before having surgery. I've got a massive fear of surgery and cannulas and I have to have both xxx

  • He would empathise with you there. He's terrified of needles too! 

    He had initially gone private via the health insurance he had through his job. The local private hospital did the initial scans and found "something" so that routed him back into the NHS loop. He had one appointment for the scans to be repeated and some extra ones done then the next appointment was 10 days later when we met the speech and language therapist then the neurosurgeon. That was the Friday and his op was scheduled for the following Wed so they did his  pre-op checks while we were there. He then spoke to the surgeon and the speech and language therapist before he was taken to theatre. As far as I recall that was the only appointments ahead of the op. This was all in Sept 2020 at the height of covid restrictions so some things may have changed since.

    Tell the doctors that you have a needle phobia. They are experienced in supporting folk who aren't needle fans and will take good care of you. I'm not great with cannulas in the back of the hand. I have tiny hands so an adult cannula is too big and very uncomfortable. A few year ago I needed a procedure and they discovered that a child's size cannula fitted so much better and for me was so much more comfortable. I was advised in future should I need one to ask for a "baby pink one."  

    love n hugs

    Wee Me xx

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

  • Oh wow I have my pre op in 2 weeks so I suppose my surgery can be anytime from my pre op. How scary! I was thinking of buying some numbing cream that's how bad I am with needles. How was your husband when they woke him up half way through surgery? Xxx

  • I'm sure they could give you numbing cream if you ask. 

    G was ok when he was wakened. He said it was uncomfortable but not unbearable. He remembers talking to the speech and language therapist and joking with the team but to be honest, he's not really said a lot about it. He was up and about the following day and then discharged the day after that. 

    Personally I felt that was a bit quick. He developed an infection over the first two days at home and had to be re-admitted for 3 days to get it treated. Suspect that was perhaps bad luck more than anything else.

    hope that helps

    love n hugs

    Wee Me xx

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

  • Thank you replying. I'm just really scared of everything. It's so hard to get in contact with my medical team aswell xxx

  • being scared is allowed, Gs1723. You'll likely go through every emotion in the book and then some but you know what ... they're all allowed. It's the strongest most resilient folk who acknowledge their emotions and let them flow.

    You are coping so much better than you think but you'll jut need to trust me on that. Stay strong.

    love n hugs

    Wee Me xx

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

  • Hell GS 1733.My story is I am 43 ,didn’t have any symptoms before 2 of May at all ,worked full time everyday,but then strong headache and for 5 hr then ambulance ,the surgery and because they immediately understood that it was a brain tumor, they removed 80%, but I was ok after 2 days .a week later they told me the result, gliobladtoma stage 4. Radio treatment has been going on for 4 weeks, and there was a week of chemo. In general, I feel good, I walk with my daughter, and I believe that I Will be healthy and return to work and to my life. I wish you to believe in yourself and win this battle.