Ive just been diagnosed with a high grade diffuse glioma which is inoperable. Any thoughts ….waiting to hear about treatment plan, possible radiotherapy and chemo. Still in shock, and mind very busy with questions. Anyone had a similar experience.
I'm sorry to hear that you've recently been diagnosed with an inoperable glioma. It's understandable that you may be feeling overwhelmed by this news and the thoughts, feelings and questions that have cropped up since.
We know that for many people this period of waiting for more news regarding potential treatment and management plans can be difficult. We have some information on our website about glioma which you may find helpful but I'd also suggest getting in touch with one of our nurses to talk through your diagnosis. I know they will be happy to listen and offer any advice, information and support they can. If you'd like to talk with them they're available Monday to Friday 9am to 5pm on 0808 800 4040.
You might also want to consider having a look at the website and getting in touch with The Brain Tumour Charity. As a specialist brain tumour organisation they may be able to help you connect with others who are living with the same diagnosis.
I hope that you're able to get the information and support you need Remyfizz. Do let us know when you have some news from the specialists.
Hi. I was diagnosed with a grade 4 glioma a couple of months ago. Unfortunately chemo and surgery are not an option for me but have just finished 6 weeks of radiotherapy.
It's very much a waiting game and I have found it hard to get much information or find people in the same position.
If I can be of any help or support being a few weeks ahead of you then please get in touch.
Hello Heffylump 28, Thank you for reaching out. I’m sorry you have diagnosed too. It’s a complete nightmare. I’m due to start Radio and chemo next week for 6 weeks. I’m not sure how I feeel about the treatment, especially as it shrinks the tumour, only for it to return . How did you find the radiotherapy? I hope you have a good support, family and friends. Look forward to chatting some more.
It was honestly ok. I didn't get any new symptoms that they had warned of. No headaches or nausea or hair loss etc. I did get a worsening of the symptoms that I had which for me was left sided numbness and visual problems but hopefully they will recover as the weeks go on and FATIGUE oh my goodness that kicked in at about week 4 and it came as a shock to the system.
I finished on Friday and have given myself a week or two off everything to rest, recover and regain some energy.
It's all about listening to your body. It was a 3 hour journey for me daily which is also tiring with the waiting around at the hospital. 6 weeks sounds daunting but it does soon pass. One day at a time xxx
Of could I didn't have chemo as an option so I can't comment on that but threw everything at the radiotherapy so mentally that helped.
I have a great support network thank you and hope the same for you.
Good Morning I do hope you beginning to feel less tired and regaining some strength. Do you mind if I ask why you didn’t have chemo ? I’m still of two minds whether to have it not ! I start treatment on Monday and I’m giving myself the next four days of nothing days in preparation. The whole diagnosis, brain biopsy, setting all financial and home matters etc has been all consuming, it’s taken me a while to really realise that a further journey is to come, and as you say wisely, listen to your body, take yourself out of your mind.
wishing you a restful weekend to come. I’m 67 and live in Dorset UK . Xx
