Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Questions about inoperable brain cancer - any advice welcome

visgraat
Posted by

Hi all,

I'm a 48 year-old man diagnosed with inoperable brain cancer glioblastoma 4 at the start of September of this year and am currently in week 3 of a 6 week course of joint radio- and chemotherapy. I feel quite lethargic and have no energy in legs at all. One of my loves is music and reading, but finding it difficult to concentrate on this - mostly watching TV or doing not much at all at home.

I understand that my life expectancy is quite low - 25% chance of lasting until next summer according to one website - and I am starting to wonder whether I should be making an active plan for the months to come, e.g. planning trips to see the Northern Lights, or simply focusing on following the hospital treatment and hoping to be one of the 25% who does survive. I think for my family's sake the second option seems better

Is there any way of finding out my expected lifespan I wonder?

The hospital nurses are brilliant, but are focusing on successful medical treatment rather than overall life outside of that. All say that weeks 4-6 and even weeks 7-8 when the radiotherapy is finished can get really hard. Is is worth it given low chance of ultimate success?

Wonder if anyone had any insight or experiences here on what I should be thinking and whether I should be taking a more active role in planning for the coming months? .Or are there any websites or books where this is discussed I wonder? Does anyone really decline treatment and spend remaining time making most of life?

Any thoughts welcome, thanks, visgraat

akist
Posted by

I think you are doing the right thing getting on the forums, there are a few more places you could visit, eg the american brain tumour association, they have much more traffic, cancer treatment research this one is private and someways off the beaten path, also I strongly suggest you get hold of ben williams' latest edition and if you are too tired/phased out to read it properly, have someone else do it for you and take notes, if they can. If you are not afraid of research then I suggest you go for it, nothing to lose.

The way the cancer behaves depends on the benefits of the treatments, its genetic make up, how large it is to start with, plain luck. In my view if you are mobile/fit, even for a few hours a day, you may want to spend time at a place you like most, obviously not during radiotherapy, but after that, if they put you on the temozolomide then you could in theory travel and be elsewhere. However radio and chemo tends to tire you down, different people react differently of course, but you may find yourself sleeping/slouching for many hours - nothing wrong with that, I have spent days/weeks on the couch. It all depends how the chemo which you will probably be doing for a year or more affects you. For example I love spending time at my summer house and would visit whenever I can, nevermind the exhaustion of the journey. The treatment will have the same outcome regardless if you are at home or abroad, the only way to affect it is to take active control of your doctors and your medications.

Once I did ask one oncologist to write down the journey for me, and he wrote down very simply, temodar, radiation, pcv, and last ditch effort, avastin. This is the "standard of care", nothing new there, but you might be able to find alternative treatments from doctors/oncologists, even on compassionate basis. As you are half way through the 6 weeks radiation I think you can wait until first MRI past radiation to see how it's working out, but it never harms to get more opinions, my typical suggestion is go privately, find an oncologist or surgeon you like, keep them on your side regardless and visit them when you need advice, make sure they have something to offer outside of the list I wrote above.

visgraat
Posted by

Really appreciate this detailed reply has given me lots to think about and research. Thank you so much for your support and advice! visgraat