Ups and downs

Talking the problem out is the very best thing to to do for both of you, but here you will find support you really need.

Waiting for data is the very worst part of the process and if no data is available, worries can build up unnecessarily.

But also you have history you are likening your current situation to which is adding to the problem.

It’s great you’ve asked for help here where we can all read, and understand your concerns and there are plenty of people that have or are experiencing the same.

All our bodies are different and our heads are by far the biggest challenge to keep under control.

Self advocacy is essential for both of you and can be the release you need but only after chasing up every avenue to gain grip on the treatment pathway. So my advice is get busy with asking prudent and specific questions to the clinicians you are able to contact to steer the conversation about treatment and answer your worries.

You are the best person who can effectively move things along and that will ease your minds and give you a direction to follow.

Good luck and keep your chin up, even if we can only sympathise, we are always here to try and help you.

Hi Shim76 sorry to hear the PSA is up, but one reading isn’t enough to prove much.  Did you ever resolve the spinal mass issue?  Personally, I would try and get another PSA now, either to prove the latest one was incorrect or to get an earlier indication if there is an issue.  Please remember that PCa is slow growing and he was staged at G7.

Hi David, they still think it’s a benign schwannoma, but will scan again in 6 months. It’s currently pushing against Shawn’s abdominal aorta - but it has remained stable since the first scan 6 months ago. 

Hi Shim76 , that’s good because they don’t suspect it is involved.  Waiting and then testing seems hard to accept from a patient viewpoint but in cases of active surveillance, it is normally yearly checks, so the experts don’t really think a few months is very relevant.  Maybe if they were our side of the fence they would think differently!

Hi David yes you’re right. Although it’s only a few months it feels like forever, and then the anxiety for the results - as a friend said, it’s a permanent roller coaster of ‘scanxiety’!