Hi everyone, I’m new here! I posted this in a few places as I'm not sure how this all quite works yet!
My wonderful dad (61) was diagnosed with stage 3 squamous cell esophageal cancer in November, with a staging of T3N1M0, well-differentiated. His initial PET scan suggested involvement of two nearby lymph nodes.
He first presented with heartburn, weight loss, and trouble swallowing, and he now has a J-tube for feeding, which he still relies on.
He completed six weeks of proton radiation and four rounds of carboplatin and paclitaxel on January 30th. The post-treatment scans were promising—his tumor had shrunk, the lymph nodes were clear, and there was no spread. However, an endoscopy confirmed that residual tumor remained, despite this the team was happt and congratulated him on a good scan.
Unfortunately, surgery was ruled out because the radiation fused his esophagus to his airway, making the procedure too risky with a high likelihood of complications. Since squamous cell carcinoma tends to respond well to chemotherapy, his oncologist recommended continuing with systemic treatment instead.
He has a PD-L1 score of 20, which I believe is high, Iso he will be starting FOLFOX with Opdivo (nivolumab) on April 8.
I’m reaching out for support from others who have faced similar situations—either those with squamous cell who couldn’t have surgery or opted not to and are doing well. My dad feels discouraged, thinking he hasn’t made enough progress and that the initial chemo should have eliminated the tumor by now. He had hoped to be on the other side of surgery and cancer-free at this point. My mom and I are both nurses, and we’re staying positive, we know how much of a game-changer immunotherapy can be, and we’re holding onto that hope. I'm trying to collect a few stories of others who have done well so I can show him and lift his spirits a bit.
A few weeks ago, he had a balloon dilation done to help with swallowing, and while it improved things somewhat, he still struggles with food getting stuck and primarily relies on his feeding tube.
On top of all this, I’m getting married at the end of May! His oncology team has been incredibly supportive and is planning to give him a mini break from chemo around the wedding as well as planning another dilation so he can feel as well as possible on the big day. (He keeps saying he wants to dance and have a Guinness!)
I’d love to hear from anyone who has been through something similar. How did you or your loved ones do without the operation? Anyone else who had this combo of chemo/immuno? please feel free to message me as well.
Any words of encouragement would mean so much!
- A xx
I saw it and was hoping it would be removed which seems to have happened 
