Father struggling to get off trach s/p tongue cancer surgery

Hello @angschaffer, What a terrible experience your dad had with his trach change. We were taught by respiratory how to suction my dad's trach at home and every time it was hard on him. He had a recurrence of his oral SCC and the trach was permanent until he passed away. It is a panic feeling to not be able to take in enough oxygen. Hopefully with time and healing he will improve enough to do without it.
I remember being hit with the news of the need for radiation right away 2 days after surgery myself. They wanted it to start within a month but I managed to get it going at 6 weeks. with all the side effects of radiation I certainly would not be rushing into that step until your dad is healing and doing well from this surgery. Sometimes you just have to take charge and make the decisions, with respect to the doctors who want to give you their best recommendation. Perhaps a question to his team could be about an immunotherapy instead of radiation starting right now? There is a lot of progress with immunotherapy for head and neck cancer recently. While the standard is radiation, there may be other options. A second opinion at a large cancer facility might be considered. Is he being treated locally? Be his advocate for his medical care especially now while he is so impacted by his current condition. Ask all the questions, especially about side effects and complications of treatment.

Hi @angschaffer,

Radiotherapy also has Proton radiation as opposed to the traditional Photon radiation. Although not as commonplace as Photon because of the size of the machine and its initial costs.

I live in Wisconsin, and they are just completing one at Froedtert & MCW Health and the UW-Carbone Cancer clinics. I am a patient at Froedtert. Matter of fact both of these clinics built them from the foundation up for the new buildings where they will be housed. I wish I had one of these back in 2008 when I received my first head and neck cancer (left tonsil) and had 35 rounds (70GY) of the Photon radiation and 3 rounds of Cisplatin (chemo) and no surgery, I would have most likely avoided my second and third cancer which I unfortunately received in 2024.

Proton is used for extremely precise radiation that should have been the key to why so many of us promote its use. Did your doctor tell you that Photon radiation is more like a flashlight beam enters body full force, treats/ targets your tumor area, AND continues through the body full force. That exposes the tissues and organs before getting to your tumor, and exposes the radiation to tissues and organ beyond your turmor. Proton radiation is very precise like a pencil beam hitting the target and can enter body at lower dose, full dose at the location programmed AND does not exit the body stopping at the pre-designated site.

In my opinion Proton is more targeted with less side effects. However, it’s a battle as insurance companies do not want to pay for Proton when Photon is 50% less costly or more.

God Bless you on your journey.

@roblem thank you. I am going to research this and speak with my parents. I did a quick google search and found it is offered less than an hour from their house.

@sepdvm thank you. I will be sharing this with my parents and dig into some research.