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.

When I underwent Proton radiation in 2011 my insurance company, Anthem, refused to pay for it. Although I was given a discount by Hampton University Proton Therapy Institute it still cost me $72,000. In Virginia we have an ombudsman program to help citizens with insurance problems. All they did was tell Anthem they could not deny me for saying this was investigational and experimental (Medicare would cover the proton therapy but I was only 60 yrs old) but then they told Anthem how to deny me and get away with it. I tried to contact numerous lawyers to sue Anthem for payment, but all the lawyers represented doctors, hospitals and medical providers, not the victims. One ambulance chaser said he would take the case but wanted $50,000 up front, 1/3 of any payments by Anthem and said if I lost I would have to pay for Anthem's defense attorneys which would have been in the hundreds of thousands. So much for justice. Instead I invaded my retirement savings. If I had it to do all over again, I would just have taken my chances without radiation.

@pampou so you would take chances with even the Proton radiation? He only has 2 of 39 lymph nodes positive for cancer. Maybe some margins, I cannot recall in this moment but I know when I was with them for the surgery the doctor said it took so long because they had to keep going for a clear margin. He's already struggling post surgery that I fear adding radiation will put him over the edge and he'll not have the best quality of life.

This is a very personal decision and if one chooses to decline a medical procedure, death can be one result. I said no to chemo, willing to take my chances. After surviving for the past 15 years my choice turned out to be ok. If I had been told what was potentially going to happen with Proton I would have chosen to take that chance too and say no thanks. But I'll never know if the Proton saved my life and if I would have died without it. These decisions are not easy ones to make. I only suggest that whatever the patient chooses, honor their wishes.

A trach is a safety precaution and should provide all the air you need to breathe. I had cancer over nine years ago and had an operation that left me with a trach. I was able to get it out about 3 months later. After 6 years the cancer returned and another trach. This time not so lucky. I also am unable to get it out. The good news is that I can talk, eat, and breathe. It is far better than the alternative.

@jeffk Hello. Yes, it sure is!

@angschaffer. I understand your dad wants his trach gone, but why is he so desperate? It's literally saving his life! I've had one for a few years and barely notice it now. The surgery helped me, too—before, I felt like I was underwater and couldn't breathe. Now, I can easily cough out trapped mucus without even needing a suction machine. He should see the trach as his lifeboat. Best wishes!

P.S. I hope his ENT is teaching him to remove and clean it a few times a day—it's just like brushing your teeth.