JPT68,

I'm sorry to hear you're having extensive surgery, and understand your concerns. I'm glad the doctors feel they can get this cancer, otherwise they wouldn't be doing it, so that's a positive sign, plus being at the top cancer center in the country.

I had intraoperative radiation, IORT, twice to the same left neck, once in 2012 was with a pec flap to protect the carotid artery after the neck muscle was removed in 2011, and in order to have more radiation, which IORT was followed by IMRT, and Proton Therapy in 2013. The surgeries were about the same duration, required the ENT and Radition Oncologist, support staff in the OR, shielded room, but the boost dose radiation wasn't for another month I guess due to healing from prior radiation to the same area.

Good luck with everything.

Thanks Paul B,
I am really struggling with the knowledge that because I didn't get a second opinion, I have had to go through more than I needed to and that I now have complications which I might not have had. My correct diagnosis is mucoepidermoid carcinoma instead of the squamous cell carcinoma that it was diagnosed as. Mucoepidermoid carcinoma does not respond to radiation and chemo the way the squamous cell carcinoma does and at the end of the treatment, the tumor was still there and they called and said Sorry, we have not seen this in 500 cases. I am in the process of formulating my signature.

Christine and everyone else,
M.D. Anderson is planning on removing the left neck nodes with chest flap. Also, removing the dead bone on the right(as little as they can). They do not plan any reconstruction on the right. Have you heard of this? My questions are numerous. I have pathologic fracture and pain from ORN on the right, as well as malocclusion.

JPT, yes I think Ive seen similar situations discussed here over the years. Every patient has slightly different circumstances so their treatment plan can vary from someone who appears to have the same thing going on. From saying there is no reconstruction planned means to me that the doctor plans on not removing too much so it wouldnt be necessary. Any reconstruction can always be completed down the road if something needs to be tweaked.

As far as the pain is concerned, talk to your doctors as soon as you can. Nobody should have to suffer. Ive had some minor ORN myself and know how much mine hurt. Hopefully the doctor will prescribe you something to manage the pain soon.

Hang in there!

Hi there hopefully they are moving quickly on this surgery. Did they say anything about your chest status? Ground glass like opacities? I'd be asking what they think it is.

Christine is right they can do reconstruction at a later date once everything heals. It sucks that you have to go through more rads and surgery but surgery should get most of it and the rads should finish it off.

Regarding the second opinion not sought, put it behind you - look forward. You are at a top hospital take that to heart. They are looking to cure you... take that to heart as well and hold onto your hope and joy. cancer can be a bitch - it will steal whatever you let it steal. Refuse to give it more than it deserves - which is a swift kick in the butt.
Hugs to you.

Thanks Christine and Cheryl,
Your words are very inspiring.
The opacities are due to aspiration as I have fought very hard to resume swallowing. My surgery is on Monday. The chest appears clear of any cancer on CT and PET.

JPT68, please consider drinking thickened fluids for the time being so that you don't get aspiration pneumonia repeatedly. You can get a can of Thicken Up from the pharmacy and put it into whatever you are drinking. It helps to prevent aspiration.

Good luck on Monday with your surgery. I will say a prayer for you. Denise

Thanks Gloria and Denise
John

Good luck with surgery Monday, John!