Should I expect more from Oncology team

Hi,

I'm curious to other peoples experiences / opinions on whether they should expect more from their oncology team.

I'm living with bone Mets and a scan from July showed a new spine met. There was some doubt about it, so I had a further scan which confirmed it. 
I'm under care of 2 different teams (surgical and gen oncology) and when I spoke to them both they told me it wasn't further cancer. However, I always receive the images and reports, and the latest report confirms progression, which they don't seem to have even read.

I've tried chasing up both teams a few times about the contradiction but haven't had a response. My next appointment with them both is in a month.

If I wasn't pushy and sceptical of their opinions in general I'd still be thinking everything is A ok.

Why does it feel so different being a secondary patient compared to primary in terms of treatment.

When your a primary patient everything is done urgently, they throw everything to help you.

When your a secondary patient it feels the opposite. Even though your life is much more in doubt and time precious, there's never any urgency, don't really thoroughly check your concerns or details and leave you living in limbo all the time.

such a frustrating thing when you feel like your not getting the best care you can get but I don't think anything is going to change anytime soon for secondary patients.

Dan

 

 

  • Hi there ...

    Sure sounds a tad lapse of them ... things are so stretched at the mo, but that doesn't help you .. when I felt confused waiting, and getting an overwhelming feeling, I called McMillan and chatted to a lovely nurse about my fear of the unknown ... 

    Keep trying everything or any one ... even chat with your g p and say you need things explained ... good luck ... know your not alone ... waiting for results and appointments and treatment is so scary ... fingers crossed you get the info  you need ... Chrissie....

  • Hi Dan, I'm so sorry that you are feeling like that - I would encourage you to speak up and ask the questions you need to ask. Whether it is because you are a secondary patient or because they are overstreched doesn't really matter - in my experience those who shout the loudest get heard! I am always polite etc but make sure to persist until I get the answers I need! I'm not sure how things work where you are but we have a nurse specialist team that you can phone, and they can deal with queries but if I want to I can also phone the secretary to the onconlogist and request a phone call. Or you could assk for an email address and correspond that way. Good luck at your appointment.