Two months ago I was diagnosed with scc of the left lateral tongue and also cancer in the left floor of my mouth. Going to have surgery to remove half the tongue and floor of mouth and neck dissection as a precaution. Surgery won't be until late September or early October. I am terrified of the wait and possibly advancing from Stage 2. No RT or Chemo if nodes are clear. Dr says I will be okay by 2 months with speech and swallow. Getting free flap reconstruction. Don't believe the 2 months healing period.

Hi Corlis. I have had that surgery. Two months healing is reasonably realistic if it's surgery only, no RT of chemo. You might have to have speech therapy but the flap and graft sites should be good to go by then. I had no great trouble with speech and eating within that time.

Yes, the wait is absolutely horrible. No chance of an earlier time? I've also had a similar wait ... I sort of think doctors consider a 6 week wait acceptable. They don't think the cancer will spread and they have to book in a range of specialists to carry out the intricate surgery. It's so hard for us to mark time but you can make sure you are as fit as possible for the surgery.

Wishing you well.

Corlis, welcome to OCF! You are in the best place for info and support.

Alpaca has had the same diagnosis and surgery so she can advise you based on her experiences. Please understand, our site is made up of patients and caregivers, without medical backgrounds. Without having years of medical school, training and experience its not possible for any of us to second guess what your physician has advised.

If you havent already gotten a second opinion I would suggest doing so. If you are able to get into a comprehensive cancer center (CCC), even better. They are the countries top cancer hospitals. A CCC uses a team based approach where all the specialists work together. Since you have a window of 6+ weeks to wait until your surgery, I suggest calling around to go for another opinion. My concern is you were diagnosed 2 months ago and its still another 6+ weeks until the surgery. Remember, once a surgeon removes something they cant put it back.

Best wishes.


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Thank you, I am afraid of the wait. I understand that is an intricate surgery but I am seeing rapid changes in my tongue. I have low tolerance for pain medication and have gone from a half tablet to 1.5. But if the 6 week wait is typical I will have to focus on my being as healthy as possible. This whole thing is just so frightening. So happy I found this forum.

Hi Corlis. I couldn't say typical. It is from my own experience that I have had to wait, twice, for a similar time for surgery. I've read that people here have had to wait. (For my first surgery I was actually rung to go in earlier because they had a cancellation.) I would also pay heed to Christine who has had a much wider experience in this forum. Finally, if you are seeing rapid changes in your tongue I would convey this and your anxieties to you doctor or the whoever your point of contact is at the hospital. You shouldn't be left worrying and at the very least you need reassurance.Sometimes you have to push them:) As Christine says, we are not health experts and all we can really give is understanding and tips based on experience.But the understanding and empathy we can give is priceless too. Only fellow patients totally get it.

Yes, you are right Corlis, this is scary. Just getting a cancer diagnosis is enough of a shock to make most of us lose our hearing. (Im kidding) Im talking about when you are first told you have cancer, most of us never hear anything else the doctor says.

Oral cancer can be a tough one to get thru. The treatments are brutal to say the least. You will want to get thru this once and hit it with everything so hopefully you never have to go thru it again. I would really stress the importance of getting a second opinion at a CCC. Studies have proven patients treated at CCCs have a better survival rate. If you can get to one I strongly urge you to go right away. Time is important especially if you have noticed any changes.

Remember the medical team is there to work for you. Sometimes they need a little nagging to move things along. Dont be afraid to stand up for yourself and ask for an earlier date instead of waiting. My concern is that you have not been given a definite date for the surgery yet. After being diagnosed 2 months ago and now having to wait at least 6 more weeks to be treated to me sounds like a long wait. This is another reason I advised you to get a second opinion. To me it doesnt sound like they are treating this with the urgency it deserves. I hope Ive gotten the wrong opinion and they are much better than what I took from your original post.

Please start making some calls tomorrow morning to try for a second opinion.

Thank you Christine, I am at a CCC,but was told that they are performing around 4 of these surgeries a week and are backed up. This particular CCC is one of the leading one in the country
They gave me the name of a couple others but they are running behind also. I will definitely take your advice and begin calling them on a regular basis. My next appointment is not until September 17th and that's with Rehab to discuss what I should expect. Don't mean to complain when others are going thru so much more. I guess it's time to become more assertive.

Thanks also Alpaca, I appreciate the words of the people here even more than the doctor's. Only someone who has experienced this either as a patient or caregiver truly understand this from our standpoint. I felt so alone before fining this forum. My family don't know what to say to me and if I try to talk with them about my thoughts and feelings they say I shouldn't do the research or talk about it. Thank you all for the support. I can't express just how much it means to me.

Corlis, I'm sending all my good vibes your way. What I went through is nothing compared to what Christine, Alpaca and many others here have endured. And they and all of us are still here. I know how tough waiting can be, so please visit us often even if just to rant! You're part of our family now and we'll do everything we can to help.

Hang in there buddy.

Im so relieved to hear you are already at a CCC. It really does make a difference.

Give them a call tomorrow and see if they can push the surgery date. At the very least you can ask for a date. The squeaky wheel...

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

Thanks Bob I will continue to contact them about an earlier date. I appreciate all the help I have been given.

Call see if you can move up the ct and Preop - a family dr. Can do a Preop. I was pushing when I found out. I had my ct scan done in 24 hours of getting my dx, I had my results within the hour I had my referral within 5 minutes after getting the results. I had my acceptance but the specialist within 2 days, he wanted an MRI which they scheduled a month later - I had a friend who got it moved up for me - a week later I met with the specialist. Two weeks later I had surgery (this was during the Christmas slow down - 5-6 weeks from dx - surgery. It should NOT BE LONGER - this is a cancer that can be highly aggressive. This is your life... Make noise. Hugs. PS CT, MRI, and CT results are usually available within 24 hours. Preop takes - max a day.

Thanks Cheryl, I will call again tomorrow and I will push harder. I signed up for a clinical trial for a new drug. Maybe I should back out of it just in case it's why my surgery is delayed. Okay to help others but not at my own risk.

Corlis- I feel your frustrations with the waiting period. My doctors wanted to postpone my surgery even more because it was difficult to get their schedules together to do my surgery. The wait was probably a little over a month. While you wait I suggest enjoy eating out and spending quality time with your loved ones. Try to take your mind off of it in between trying to have those doctors move up your appointment. Keep us posted on your surgery date.

Corlis... how are things... sorry it's been a bit since I checked in. I am soo busy but miss lending my support so I try to get on a few times a week. I failed miserably at this over the last few months. Hugs and give us an update when you can.