Navigating a New Diagnosis: The Struggle for Specialist Care

Pam…never stop advocating! This is not an unusual situation unfortunately. Squeaky wheel gets the oncologist as they say… ;-) Please keep us posted as you assemble your team. 💛 Suzanne (Community Moderator)

So agree. I am a nurse and have good insurance but have no clue as what to do first. I am getting a port put in next week

So far this week I have had an ECHO/bloodwork/Bone Marrow, will have a CAT tomorrow and Friday a port put in. Next Tuesday I have my PET scan. It’s a lot to take in

Hello Pam that’s the start of RCHOP lots to take in ….but good news you are close to first treatment!

Very close, looks like aug 6

I also had a port installed after my 1st chemo. Much better than the 2 connectors hanging from your arm. In remission now & have an appointment to have it removed. They gave me a tube of ointment to deaden the feeling on & around the port before chemo. Don't forget to do it as directed. If you don't, when they connect to the port it really stings. Good luck

Getting timely access to specialists after a new diagnosis can be incredibly frustrating, and self-advocacy really does make a difference in navigating the healthcare system. Many patients in similar situations have found success by being persistent with scheduling, asking to be put on cancellation lists, and preparing questions in advance to make the most of appointments when they do happen.