Thanks David and Christine, I feel more assured and I am calling to request a date tomorrow. Will let you know how it goes.

I read your posts and can relate to how hard it is to wait. I had a two week or so wait for original biopsy results and then about a one and a half week wait for the pathology results after my surgery. It was excruciating because my imagination was just running wild. Most of the scenarios I feared have not come to pass. I didn't have a full half of my tongue removed, so I didn't get the flap done. I had about a third of the right side removed and I had a right neck dissection as well. I also did not require radiation or chemo at this time. I can tell you that I was never one to be able to take things "one step at a time." But I am now. I would say that is one of the good things that have come out of this whole experience. I know it is hard to do, but being able to focus on the next thing one at a time really helped me to keep myself in some peace. I hope all goes well for you. I honestly can tell you that at least for me, it really was not as bad as I had anticipated. I did recover prior to two full months, but I didn't have a flap done. I will keep you in my prayers. Let us know what's going on! Denise

Okay so a four month wait for surgery is too long... I don't know how you would expedite the matter but it's far too long. Normally I wouldn't suggest otherwise but maybe finding a top notch ENT with major cancer experience - NOT at a ccc to do the surgery would be prudent - if they can get you in earlier. Or continue to call - ideal the treatment at a ccc is the best option but if they are making you wait an extended period of time then your life is on the line. As long as they are removing the required number of nodes and they are exceptional re the surgery then I would say have the surgery ASAP and go for follow up treatment at the ccc. I would not wait 4 months. Mind you you do want the best if the best for this surgery. Hugs.

It is best to be treated at a CCC but I would be concerned waiting that long for surgery.

Have you had a CT or PET scan yet?

Just make sure when they do the surgery, the have a pathologist checking the removed tissue during the surgery (know as frozen sections) to make sure they remove enough to get clear margins. I was a cancer novice when I had my first surgery, and had the surgery at a small local hospital. This was not done, and resulted in a lot of problems for me.

Wishing you the best!

Thanks everyone. I feel that it's too long of a wait also. I called today to talk with someone about the surgery but could only leave a message to be passed on with the promise of someone calling me back. The lady answering the phone offered an excuse that they have to wait on the approval from the insurance company. I asked if that was the problem but she didn't know. So another thing to be concerned about? ! I am going to look into some other options but how do you know if the new doctor outside of a CCC is any good and how do you find them. I feel so ignorant of what to do and where to go. I will never ever take it lightly again when I hear people discuss finding good medical care. I am mentally and physically tired and lost. Don't mean to sound down about it. Wish someone could take me by the hand and lead me step by step. But I guess we all felt like that at first. Okay no time for self pity. Tomorrow I fight. Thanks again your help is a Godsend!

You have every right to feel down. You will feel better when the date is settled. Do you have an advocate? A partner, family member or friend who can help you navigate the system? If not, what about your GP (family doctor) or a Cancer Society nurse? Basically I feel you need someone to explain why they haven't prioritised your surgery and what the risks, if any, of a delay are.

It could be that you will be rung back soon but just in case it might pay to get some support in place.

I'm a non-assertive person so find this sort of thing hard. My project manager son helped a bit last time. I also found that tears worked too or just blurting out exactly how I felt so that the person dealing with me was forced to take action. Sometimes being stoic just doesn't cut it.

Well I have certainly gone the explosive emotional route. I don't have anyone to help navigate. Ordinarily I would have my sister who learned a lot going through breast cancer with her 35 year old daughter. For her the learning process took to long to help her. Now my sister is caregiver for her husband who is at end stage Prostate Cancer.SHE is restructuring their lives moving in with her son for assistance with her husband. Although she tries to help she has too much on her plate in addition to just having a masectomy. I am sure you understand the problem there. I have asked for a nurse navigator but no answer yet. At a lost right now. I know I need help.

I hope a nurse navigator materialises very soon.

Hello again. I have some news finally. It could be better news but some news is certainly better than no news. After calling patient relations and my doctors office this morning I finally got a phone call. I go for pre op on September 9th,also a CT Scan, and a visit with my doctor. On September 17th I meet with the pain management and speech therapist to discuss what I should expect. My surgery is scheduled for September 29th. I was also.told.that I could possibly be scheduled.for an earlier surgery. Date but I may receive a short notice. I pray I get moved up to an earlier date. The team of doctors I have do about 4 of these surgeries a week and it's a CCC hospital. So I am praying for the best.
I tried this morning to find another doctor and hospital but they do not take my insurance. I think in this area where I live the hospitals have an agreement that each would except different insurance so that the patients can't defect. At least that's how it appears. But final outcome no nurse navigator.

Hi, You need to call your team and ask for an earlier date, "the noisy wheel gets the grease" You have to be your own advocate in this WAR!!! Keep up the good fight. Semper-Fi Bob