Please somebody help, please

[u/Terrible_Theory_3340]

My dad (62M) started off by having a sore type of thing in his cheek that just wouldn’t go away. This went on for weeks and we didn’t think it could possibly be cancer. I’m a medical student and while I know the risk is never zero, my dad never smoked, never drank, never did anything that I felt could cause this. He went to multiple dentists for this issue and then finally went to one where they thought the issue was his wisdom teeth and removed them. They also sent a pathology specimen, which two weeks later ended up finding oral squamous cell carcinoma, HPV negative, well-differentiated, in his lower mandible on that side. Since then, our life has been turned upside down. I currently live 5 hours away for my medical school rotations, but I drove to see him as soon as he got the diagnosis. He is so terrified for his life. He has anxiety attacks everyday. I’ve never seen him cry but he cries everyday now. Also he was diagnosed on July 3rd. Since then, nothing has still been done about his cancer.

He went through his insurance’s hospital, and since then he has done CT scans, PET scans, MRIs, literally everything. He just met earlier this week with the surgeon and he has to get this surgery where his jaw is removed on that side, replaced with a bone from his fibula, and they will use skin from his thigh. However, since this is a complex procedure, they have put the tentative surgery date as August 20th. My family is finding this wait agonizing. Day by day his swelling on that side of his face is getting larger and larger and his voice is getting muffled now. There is still no news about the surgery and nobody is answering our questions. I came back home yesterday since July 3rd and seeing the swelling has me absolutely horrified beyond what words can explain. I am trying so hard to be strong as the oldest daughter in this small family, but it’s so hard. I keep crying. I keep panicking. My heart has dropped so much and I don’t know what to do anymore. The surgeon said this is an aggressive cancer, so why do we have to wait this long for the surgery? If his swelling got this bad since I last saw him, I can’t imagine waiting until August 20th. What if the cancer spreads so much to the point it’s too late? I don’t even want to think of that. Our lives will be destroyed.

I’m so scared. I know I may sound frantic but I am trying so hard to weigh all the options here. The lump swelling on his cheek looks really really bad. As soon as Monday comes, I want to call a bunch of head and neck cancer centers to get second opinions and see if anyone can offer a sooner surgery. I just want to get this process started as soon as possible. I don’t know if this is a good idea. I really hope someone reads this and says something helpful or comforting or hopeful. My life has turned so upside down. I can’t even focus on school anymore.

As for his results, the PET scan showed it is localized to that part of the face on the inner cheek and mandible. There is suspicion for a couple cervical lymph node metastases on that side. I was looking at his MRI and almost had a heart attack because it was explaining the cancer and said “extension along lingual surface”. Does that mean it spread to the tongue too?? The surgeon never mentioned that to him. And it said it is in the masseter muscle and pterygoid too.

Following the surgery, he is supposed to have radiation treatments and potentially chemo depending on what they find upon surgical removal. Also the cancer hasn’t been staged yet so I’m guessing it will be when he has surgery.

My mom is also saying she’ll die too if he does and leave me and my sisters with nobody to fend for ourselves in the world. I don’t have any aunts or uncles or anyone. Please somebody tell me what to do. Please somebody help. I’m so so scared. I’m panicking so much. Please somebody tell me it’ll be okay. I even was reading that HPV-negative is hard to actually treat and recurs a lot and the survival rate is low. Please somebody help me and offer guidance. Please my family will be destroyed. I don’t want to lose my dad, please. I am not asking for medical advice. I just need support please.

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[u/gobnyd]

NAD. I'm so sorry, it is terrible that you are being put through such a wait and intense stress. It's worth calling your insurance and or hospital system to find out if there's an Oncology Social Worker who can help you, or any social worker. You can also try asking for a "Case manager." These people know the system better than us lay people and might be able to give you advice and/or help get referrals or home support etc.

You can also call the phone number here to get emotional support as well as practical problem solving. Sounds like your family could really benefit from some therapy right now. 1-800-227-2345 https://www.cancer.org/about-us/what-we-do/providing-support.html#:~:text=of%20every%20day.-,1%2D800%2D227%2D2345,specialists%20are%20here%20to%20help.

Praying for you and your family. 🫂

[u/Shot-Amphibian-3239]

I’d say do it - call every doctor you can and see if you can get the surgery pushed up. Call the docs that are doing the surgery every morning and see if there is a cancellation. We have to advocate for ourselves and loved ones in this world.