It’s Back with a Vengeance 😞
I was originally diagnosed stage 3C2 in Jan 2025. I did 6 rounds of cisplatin, 35 rounds of radiation & 3 brachy treatments. All treatments finished at end of May 2025.
Insurance denied a post treatment pet scan as “not medically necessary.” I had a CT done that showed I was NED. Another 3 months passed & it was time for scans again. Insurance denied the pet again. I begged my oncologist for a pet scan. Really because I just wanted reassurance. Oncologist said there was nothing she could do if insurance denied the pet request. This next CT showed I was NED. The whole thing happened a 3rd time. Again I requested a pet. It was denied, but the 3rd CT showed NED. During this whole time I have been in a lot of pain. I kept being told it was due to scar tissue & radiation. It “should go away” or become not as bad the further I got from treatment.
A couple months ago, I switched oncologists because I was frustrated with the lack of care (a lot more than just not helping with getting a pet). The first thing my new oncologist said was, we need a pet scan. I explained how insurance denied & my previous oncologist that there was nothing I could do. My new dr looked at me like I was crazy & said, of course there is! She said she just has to ask for a peer to peer review to overturn it. She submitted the request. Insurance denied. She requested a peer to peer review & the pet scan was approved.
I just got my results & I am in shock. I am not NED and the pet scan report shows cancer has spread. It’s spread a lot. It’s in my:
Left cervical/supraclavicular lymph nodes
Mediastinal/posterior chest lymph nodes
Retroperitoneal/abdominal lymph nodes
Pelvic/iliac lymph nodes
Right adrenal gland
I haven’t met with my oncologist yet because I saw the results on MyChart yesterday. I am waiting for her call.
It hadn’t hit me yet. I feel nothing. I’ve only told one person so far. I am not sure what to do next, but I feel like I was failed as a patient & as an insured.
I don’t know what to do or think. Anyone have any thoughts? Thank you for reading 🩷