Hello everyone,
Roughly two weeks ago my wonderful husband was diagnosed with an inoperable brain tumour the size of a tangerine, located between his frontal lobe and temporal lobe. It was detected as he had a localized seizure so he was admitted into the hospital for that overnight and put on Kepra as a precaution. His case was to be taken in front of tumour boards here (I am Canadian, so I'm not sure how that would work in the UK), but it hasn't yet, which is highly discouraging as the boards have already met twice since the initial diagnosis and my husband's name has not been brought up.
Two days ago he had a second seizure, and after waiting 11+ hours in the ER as per doctor's instructions, his Kepra dosage was increased and he was sent home. There was no addressing his concerns about Kepra's side effects taking a toll on his work performance (as he is experiencing a high amount of difficulty concentrating, which is not good as he works as an accountant). There were no offers of other medication, such as Adderall, to temporarily mitigate that side effect while waiting on the tumour board's recommendation. There was also no mention of possibly booking a biopsy in the future to figure out what type of tumour my husband has, whether it is cancerous or not, benign or malignant, what grade it is at or anything. Current best educated guess is a grade 1 glioma, but we need a solid biopsy result of we want to start applying for treatment trials here in Canada.
As you can imagine, this has been deeply disheartening to my husband. In his words, "I don't know whether to put a down payment on a mortgage for a house or for a burial plot."
Any words of encouragement or advice? A second opinion is not possible where we live as there is only one hospital in our city with a neurology ward.
Hi and welcome to the Online Community but so sorry to hear about your husbands diagnosis.
A cancer diagnosis in the family can be very challenging but talking with others who are walking the same type of cancer journey (my one is completely different) will help you navigate this difficult time.
The Community has many cancer specific support groups so can I recommend you join our supportive Glioblastoma multiforme and Brain tumours groups as these will be good places to connect with folks on the same cancer treatment pathway.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
All the very best ((hugs))
