New in forum! Helpwith your opinions and answers. I want hope!

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good evening to everyone 

Τhis is my first time posting to the community and I ended up here looking like you for information on the glioblastoma that was diagnosed this summer. I

have been lost in a lot of information searching the internet which may not be the best solution. the community here is the best I've found. Everyone's situation is different and individualized and needs discussion with their doctors. but experiences are useful.

I'm looking for hope and something optimistic where at least in this phase of the beginning that I find myself giving a little boost and not throwing on the floor. I have a very supportive wife and also a young daughter.

The most optimistic I'm looking for is cases where the life extension exceeded the expected limits, it was years. I have read such cases but I would like such live experiences more collected in one post. that after diagnosis there are people who endured 7-8-10+ years beyond showing symptoms which is another matter. I am asking for examples of people who were diagnosed with glioblastoma years ago and are still alive.

it is the most practical optimistic example I can read.

psychology is unfortunately important and usually positive news is not easily reported on the internet because it is more difficult or because it is not evaluated as correct

Please little hope, little Push 

  • Just hope i asked. Ινead the rules snd I respect everyone and yhis community. I am in yhe first steps and i search samothhing optimistic.

    don't want personal examples or personal data. I'm asking if there are any cases you've heard of life being extended years beyond the original estimates.

    just that simple

  • Hi @Nasos77

    Thanks for getting in touch. My name is Sarah and I’m one of the cancer information nurse specialists.

    It’s completely understandable you want to hear good stories after a cancer diagnosis, as sadly there are lots of not so good ones on the internet.

    I see from your profile that you haven’t joined any groups yet. I wonder if our Glioblastoma multiforme brain tumour forum might be a good place to post your question, as there may be people on there who are in a similar situation and can offer support for you.

    It’s so difficult for the nurses on the support line to know what your prognosis is as we don’t have any access to medical records. Sometimes consultants are careful to share this information, especially if someone is having treatment as it depends on how well the treatment is working.

    You mention hope in your post, there is always hope and I’m so happy to read you have a very supportive wife and younger daughter. We have a family and friends forum also that might be helpful for them to look at if they feel this is something that will help them.

    You’re right in what you write that everyone’s situation is different and people’s bodies respond differently to treatment. There are clinical trials that are being carried out that your hospital consultant may have mentioned to you.

    There may be support groups in your local area that would be worth exploring. It would also be worth speaking to your hospital team to ask if they are able to put you in touch with other patients who have had a similar diagnosis and have responded well to treatment.

    Brainstrust offer peer support and have stories on their website about people who have been affected by a brain tumour that you might find helpful to read.

    I really hope this information was helpful.  Please know, you can always give us a call to talk things through further.

    Take care and best wishes,

    Sarah (Cancer Information Nurse Specialist)

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email or use webchat.

    Ref:  KE