My husband was found to have brain metastsies last September ,they came out of nowhere {a seizure } . At our second meeting with oncology they told us without Gamma Knife surgery he had around 3-4 months to live and with having it done probably around 12 months . We are now at 19 weeks and none the wiser as to where we are . We went for a meeting to get the results of the Gamma as it had been 3 months so they'd tell us what was happening . The oncologist we saw said she wasn't sure as to what these scans meant as it wasn't her remit so they would be sent off to the gamma specialist , they then rung us and said he says theyr'e exactly what he thought they'd be at this stage ????? I don't feel this is good enough but maybe i'm wrong ? What is " they are exactly as i'd expect them to be ? Has anyone else ever had this ? I feel like were no further forward than we were last September i'm actually at my wits end with it all and don't have any faith in our oncology team
Hi - sometimes it seems the oncologists think we are all mind readers though on the other hand they are all so incredibly busy.
Hopefully your husband will have a lead oncolgy nurse and they can be a godsend in finding out the information we need in a way we understand. A good backstop in the process though we found was the PALS service at the hospital. They are great at being troubleshooters and helping to remind the oncologists that patients and their families are human.
Hope you get some answers soon.
<<hugs>>
Steve
