Follow up care was NOT scheduled

[Pancake_Lefse]

Sooo … when I was looking at Jeff’s upcoming appointments, I was really concerned there was no sense of urgency in his follow up care for the brain metastasis.

I couldn’t shake my concern and pleaded with Jeff to let me message his care team to find out why there was such a delay. Jeff finally consented to let me contact them.

To my horror I realized I read the appointment wrong … there is ZERO follow up care scheduled!!! 😡 (I mistook his upcoming appointment for “radiology” as follow up with his radiation oncologist. Wrong!!! It’s for scans.)

I sent the following to his urologist, medical oncologist, and radiation oncologist:

“After going to the ER for blurred vision/disorientation, we learned that Jeff is experiencing a number of complications, however the most frightening and concerning news is that his prostate cancer has metastasized to his brain.

Jeff went to the ER on August 6th and was admitted August 7th - 10th. While there they addressed potential heart issues (he has blockage in a vein in his neck going to his heart), his fluid retention, and low oxygen levels.

No one has addressed the brain metastasis nor was any follow up care scheduled for this. All we seem to know is that he now has brain cancer. While Jeff was in the hospital, Claudia with Palliative Care, advised that Neurology was only following Jeff’s case via his chart as there was nothing they could do for him at that time. Jeff never met with a neurologist.

We are alarmed and very, very concerned about Jeff’s well being and that potential treatment is being grossly delayed.

Could you please assist in getting Jeff the care we think he so desperately needs?!

Thank you for your help regarding this matter.”

[Birdfeed]

Call Dr Kwon’s office to set up an appointment!!!!

[Pancake_Lefse in reply to Birdfeed]

Since sending my messages, Jeff is now scheduled Monday morning @ 9:45 with his radiation oncologist to discuss treatment options.

Dr. Kwon is one of the 3 doctors I sent my message to.

After the above appointment was made, Dr. Kwon’s team reached out. Dr. Kwon concurs Jeff should be seen in Radiology and encourages Jeff to keep that appointment. Obviously we will. Although unrelated to this initially, Jeff does have an appointment with Kwon’s team at the end of this month. Regardless, I’ve been sure to keep Kwon up to date on the recent goings on.