Radioactive

 

As I sat in a truck waiting for radioactive material to circulate in my body last week, I did a quick calculation of how much radiation and contrast exposure I've had - this only includes CT scans, MRIs WITH contrast, and nuclear medicine scans (bone scan, PET scan) - it does not include the likely hundreds of xrays and many non-contrast MRIs and ultrasounds, which do not result in radiation exposure): 

2 nuclear medicine bone scans (including radioactive dye)

2 PET scans (Positron Emission Tomography) (including radioactive dye)

9 CT scans with contrast, 2 CT scans without contrast 

7 MRIs with gadolinium 

Yikes. I'd say I was concerned about all of this causing cancer, but since I've already had it twice, I guess that horse left the barn a long time ago. And now, I am facing additional scans and radiation every 6-12 months to monitor this lymphoma. 

Except the lymphoma barely showed up on my PET scan. Most of them (>95%) light up quite brightly on PET - even the node that was biopsied, that is KNOWN to be full of cancer, did not light up like a normal cancer node on PET. So now I'm in a complete no man's land of diagnosis: if the cancer node didn't light up, how do we know where else there is - or isn't - cancer? 

I couldn't get an answer to that question or a satisfactory explanation from the utterly shitty providers (NP, MD oncologist and radiologist) who have been in charge of this clown car since last month. Well open the door: I'm getting out of this car, and getting in one with a better driver. 

There are a million things NOT to say, do, or act when dealing with a cancer patient. Dropping bad news, not following up, not being prepared for a visit, and not taking the time to explain things are all on that list. Even as a physician, and a tough cookie who isn't afraid to ask questions and advocate for herself, I've had nothing but terrible care from my local oncology group here. I'll write another post at some point about just how awful it is to have a second cancer diagnosis flippantly dropped on you by a provider with less education than you have, and to have an MD oncologist you TRAINED with lack the professional courtesy to pick up the phone and call you himself. I have zero confidence in their biopsy sample, their PET scan read, or their plan, which was to send me for radiation of my groin without knowing the true extent of my disease. 

Time to name and shame will come. For now, I have an incomplete biopsy, a poorly and incompletely read PET scan, and a known cancer that seems to be invisible on standard imaging. I'm not really any closer to a plan than I was a week ago - except a plan to get on a plane tomorrow for Houston. 

Tomorrow I fly to the world renowned MD Anderson to establish care with their lymphoma doctors. I haven't even set foot on the campus yet, and it is night and day different than anything I've experienced - they have been in close contact with me from the moment I filled out the online referral form, and have held my hand every step of the way. They took the initiative to get my financial approval themselves, to set up an appointment even before that was guaranteed, and the kindness and responsiveness I've gotten from every person I've spoken to is truly amazing. I'm in no way excited to have another cancer, and not really excited to travel for hospitals instead of fun - but lymphoma is complicated, less common than breast cancer, and I have to get it right or risk causing it to transform. So I'm not wasting time here, and I'm not tolerating shitty doctors or systems any more. How the average person navigates this is incomprehensible to me - and every interaction with our broken system is a reminder that it must be fixed.