Going in for my pre-op meeting tomorrow and I could really use some advice. Doctor is planning a partial-glossectomy but I'm not sure if this would be enough for clear margins - if that's even possible with my tumor. I've read about the chances of recurrence with partial (and even hemi) and I'd rather he just take out more than he has to than too little. I don't know how this works, I don't know if this is something he can change during the surgery based on the size of the cancer, or not. The secretary said the surgery will be 30 min altogether (including neck dissection), but when I browse the forums most surgeries similar to mine seem to take a couple hours, so I'm confused and I'm worried this might be rushed. I'm pretty sure just writing this post took me like 15 minutes, so I really don't get how he's going to get everything done that fast? I know he'll probably explain everything tomorrow, but I don't want to walk in uninformed. I'm also trying to avoid googling so I'm turning to you guys.

I don't know if surgery and treatment is something you discuss and decide with your doctor, or if it's something he decides himself what he thinks is best and you just have to find another doctor if you don't like it. I'm guessing the more he takes out the more the need for reconstruction so it's more work for him? Would he say no because of this?

A lot of silly questions I'm sure but I'm really wondering. Can someone please give me some insight as to what I should know going in? Thank you.

Write down all the questions you wrote and ask your surgeon tomorrow. Remember he (or she) works for you and they should answer to you. Some surgeons can act a bit superior to the average everyday person but they are NO better than anyone else...including you. Do not allow their years of medical training intimidate you. Here's a link to the main OCF site where theres page after page of info. You can learn a great deal about OC, treatments, etc to become an informed patient so you can be a stronger advocate for yourself.

A few things that can help you with your appointment are.... Take someone along with you to take notes. Just having an extra set of ears will help you to feel more confident at your appointment. Also take along a tape recorder and ask if you can record your appointment so you can go back and listen to it later. Its amazing the amount things you forget as soon as you walk out of the doctors office. At least it is for me, my memory isnt very good at all anymore. Ask if further treatments would be necessary. I would want to know how often your doc has preformed a similar surgery and approximately how many patients needed more surgery down the road. You may want to know if any other doctors will be assisting your surgeon. Ask if they will be taking any tissue from other areas to rebuild your tongue (usually from the wrist/forearm area). Ask if you will need a trach, how long you'll need it and if a possey muir valve trach would be something that would allow you to speak easier or would there be too much swelling for that. I'd also ask approximately how long you will be in the hospital. Most patients are there anywhere from 3-8 days. So many variables go into how long you will need to be hospitalized that its not an easy question.

Best wishes!!! Please let us know how you make out at your appointment.       

Main OCF Site.... Understanding

Christine, you're amazing -- and completely right. Thank goodness I heeded your advice and brought someone in with me because even in the aftermath when going through what the doctor had said with them I was just remembering the worst and even exaggerating it! The brain does play tricks on you.

So apparently the surgery they initially scheduled was if the tumor had been in-situ, but since the biopsy showed invasive cancer and a larger tumor so it will be exactly as you said - a 5 hour surgery with a reconstruction using a piece of skin from my arm. I'll be in the hospital for up to 10 days, and I'll have a trach in for a couple of these, pretty much exactly what you told me. Won't be fun but I've decided to try and leave the difficulties of it for when I actually have to face it - it will suck either way, no matter how much I try and prepare for it.

Im so glad you took someone with you!!!! We all are guilty of hearing bad news and then all we can do is focus on that bad news, our ears stop working. Thats why recording the appointment is a huge help too. Just make sure to always ask before recording. Several members have reported their doctors refused to be recorded. Probably they're afraid of lawsuits if they say something wrong.

Best thing you can do now is to eat. Have all your favorites and then have seconds, desserts too. You probably will have difficulty in eating after a major surgery. You might want to check out the facility where you will get treated and see if they have a speech pathologist/SLP on staff to help you after surgery. It will feel strange trying to talk and eat with your new tongue. The sooner you can start working with someone the better your results will be. Most patients with this type of surgery have said their tongue feels too big or tethered down. Honestly that isnt a big deal. Both things are easy fixes after the swelling goes down which can take months. Dont worry!!! Most swelling is gone within the first 2 weeks, it just takes longer for it to go away completely. You can always have reconstructive surgeries down the road to tweak your partial glossectomy. Those are very easy and quick surgeries that are usually done on an outpatient or overnight basis.

Prior to having anything done please make sure you get a complete blood work up including thyroid count (also testosterone levels for men). Make sure you ask about the possey muir valve trach to make talking much easier.

You are completely correct... its going to suck!!! Im so very sorry you have to go thru this. I know its horrible and upsetting. Try lining up friends and relatives who can sit with you while your in the hospital. You may not be with it the first day or 2 and you'll probably be hurting too. If you can have someone stay with you around the clock your entire hospitalization that would be very helpful. You will need someone to advocate for you. Unfortunately you could have a huge neon sign saying you cant talk and hospital staff will still ask you questions when they walk into your room. Eating wont be easy either, dont be surprised to get meal trays delivered even though you wouldnt be able to eat them. I was in the hospital for 2 months getting half of my lower jaw removed. There was no way possible I could even attempt to take a bite of a regular meal but every day 3 times a day the kitchen still sent me trays of food. They were told every single time do NOT bring any meals but there was a major lack of communication between my room and the kitchen. Having someone with you while you are hospitalized will help by refusing the meal trays, tracking down a doctor or nurse when you need something, or just to have someone be your voice and interact on your behalf. It really would be a huge help for your stay.

Hang in there!!!