It's been some time since an update has been published. This was intentional as we all caught the flu and had to postpone some appointments. Then more questions arose regarding the extent of Justin's condition. 

On Jan 9th, 2024, Justin underwent a neck biopsy to determine if the Lymph node in his neck was cancerous. The lymph node came back negative for malignancy. Phew! Mayo scheduled a consult with ENT, we assumed as a consult and nothing more. 

On Jan 18th, 2024, Justin had a rough day at work. He had been lightheaded and overall severely fatigued and called the Oncology team to see what they suggested. They recommended that he get to the nearest ER to be assessed for low hemoglobin and to see if a blood transfusion was necessary. For hours they ran tests and determined that his hemoglobin was still dropping, but not significantly enough for a transfusion. His potassium was very low as was his iron. They got his potassium level up and got him on a good iron supplement. This has helped tremendously.   

On Jan 22nd, 2024, Justin met with ENT with no understanding as of what the appointment was for. Medical students, residents and the ENT physician all piled into the room to discuss Justin's case. They wanted to either biopsy his left tonsil (that also lit up in the PET scan) or remove it completely to check for cancer of the neck/throat. They began to discuss how the same Chemotherapy. FOLFOX, can be used for the treatment of the secondary cancer and they would continue scans to determine if the FOLFOX was effective. We were dumbfounded and numb at the mere shock that this was such a concern being that the lymph node was benign. Instead of undergoing an unexpected surgery, Justin opted for the immediate biopsy. 

Meanwhile, we're sensing a breakdown in communication from the oncology team. We're realizing that a treatment plan was put forth prior to ever meeting with them, that they are looking at the scans and making assumptions without due diligence of confirmation. The lymph nodes in the back, which had shown up since the first CT scan, were what was pushing the Radiologist and Oncologist to blindly push Justin into a stage 4 diagnosis. We put the port insertion on hold until we could meet with the Oncologist to discuss additional options for treatment and diagnostics. 

On January 24th, we were able to meet with the Oncologist who was gracious enough to squeeze Justin in. We had received no education on the Port, Chemotherapy and additional processes. We were able to sit with the Oncology nurse to receive all education and get questions answered to the best of their ability. Multiple times the oncologist used "maybe" in her overview regarding the tonsil biopsy and the state of the lymph nodes.  "The lymph nodes in the back MAY BE cancerous, the cancer MAY BE metastasized, the neck MAY indicate a secondary cancer".  Justin decided to move forward with the port insertion on Jan 25th, 2024. 

The difference between the MAYBE and NOT are the difference between Stage 3 and Stage 4 and possible treatment options. We don't do MAYBES. Late on Friday, Jan 26th, 2024, the biopsy results from the tonsil came back. NEGATIVE FOR MALIGNANCY. 👍When that came through I started a deep dive on lymph nodes and PET scan accuracy. What I found was PET scans can very frequently give a false positive on lymph nodes, especially those under 1cm, which is what Justin's are. Due to the fact the other lymph node was benign along with the tonsil, we are doing our own due diligence with diagnostics and treatment moving forward.

Chemo was set to start today, Jan 30th, 2024. We have put that on hold and requested biopsies of the lymph nodes in Justin's back. The biopsy is scheduled for Thursday, Feb, 1st, 2024. We've also requested a list of clinical trials that based on the results of the biopsy would be applicable to Justin's cancer. With the uptick in Colorectal cancers there have been some promising advances in recent years and we don't want to dive into Chemotherapy if there is an alternate option looming. 

Fingers crossed the biopsies on Thursday show that the cancer hasn't actually metastasized and we can breathe a little easier. Right now the treatment plan was basically "We don't really know the full extent, but we can pump you full of poison and find out" Its something neither of us are comfortable with and want to make the best and most healthful decisions moving forward. 

GOFUNDME

VENMO - @Katie-Novak-27