Hi everyone

Like many others I have recently come upon this site and have read some interesting things. I was diagnosed with tonsil tumour in November 2010. Received radiotherapy which has resulted in radio osteonecrosis. Following hypobaric O2 therapy, two debridements and another biopsy the tumour is back. I had a peg fitted yesterday and am due to have surgery next Monday. Throughout this journey I have tried to remain as positive as I can and kept active etc. That changed this week when I saw my consultant and he went through each stage of the operation and possible complications. Basically I have to have a tracheotomy, neck dissection, L hemimandibulectomy, L tonsil tumour resection, R fibula free flap, R abdomen skin graft and possibly more dental extractions. He told me that half of my tongue would be permenantly numb and I would need speech therapy and would never speak as I am doing now and there could be nerve damage to my neck, shoulder and leg. I held it together until I got home and then crumbled as the enormity hit me. Yesterday I decided that I may not go ahead with it but had a chat with a nurse at the hospital which helped. I'm sure many of you have been through this and worse. I'm feeling very scared, vulnerable and worried about my quality of life in the future. I would really appreciate any of your comments or advice. Best wishes to everyone.

Mars, welcome to OCF! You have come to the very best place to get help with this enormous decision you are facing. Your life will be permanently altered forever by agreeing to do this major surgery. Believe it or not, almost 3 years ago I was facing the same choice of weather to put myself thru a mandibulectomy or to let nature take its course. The friends I made right here are the reason I am alive today. They encouraged me to at least try before giving up. Nobody knows your situation better than you, your family and your doctors. Make a deadline for your decision and think long and hard about the pros and cons, write it down if necessary.

Medically, it is a very invasive surgery. Several parts of your body will be affected so to be honest, you will be in considerable amount of pain. Recovery can take anywhere from 3 months to 1+ years. For my situation, I had complications which made my recovery take about a year. Ive seen others bounce back rather quickly after such a big surgery. From what you explained, it will be a 10+ hour operation. Mine was 10 hours and I did not have anything done to my tongue. That is where we differ. My speech is very good considering I have no teeth at all. You can attend speech therapy to help you relearn how to enunciate words so you are understandable.

Please feel free to ask my any questions and I will do my best to help guide you (no matter what your decision is). I hope you will consider trying to get thru this. But if you dont and you are mentally ok with it, thats alright too. In my opinion, its better to live with some life altering limitations and still be alive than to have not had the opportunity to thrive after cancer.

Best wishes!

Hi there! Welcome Christine is a woman in the know she's been through it. As for your tongue -mine is half numb and I talk fine.. I have my days where it's a little lispy - usually when I'm tired or it's swollen (rads fallout) but its fine. And the neck and shoulder thing I too have been there I'm at 95 % 1 year out...please don't give up. It's amazing how strong we can be. Hugs!

Hello Mars - very glad you found us here and I hope we can help you get through this. As everyone has written, it's not easy. My own surgery was nothing compared to what Christine, Cheryl and now you too will be facing. They are heroes and I know you will join them in the pantheon!

I can however speak to the tongue numbness issue as I also have a half-numb tongue 3+ years out of surgery. It's a drag... but you do get used to it although it takes a bit of time. My RO had told me that sensation can return for up to 5 years post-surgery and I have noticed a bit of that. I don't believe it has had any lasting effect on my voice, especially now that I've recovered a good bit of my salivary function post-RT.

Oh and I also had an emergency tracheotomy after surgery for the better part of a week. Unpleasant, but that too passes (although I do know there are some permanent ones).

Mainly though keep in mind that we're all different. Doctors have to kind of give you the worst case scenario at some point. You may recover faster than others, you might not have as much nerve damage, etc., etc. I know getting all this news, especially in a bunch, is frightening and demoralizing. But I'm sure you're making the right decision to have the surgery. We are all here for you. As Cheryl says, it is indeed amazing how strong and resilient we become when we need to.

I'll be sending my best vibes across the pond.

Hello,
I know how devastating it is to receive this news,let alone be able to comrehend the amount of surgery that is required to attempt a cure.
We were in this position late february. Kris initially refused the surgery. The surgical team then told him that without it he would die a horrible death within 12 months. I also pointed out to him that this surgery could well save his life - he could be here in 20 years to celebrate our golden wedding anniversary. He had a chance of life by doing this. Without the surgery there was no chance. There is much to live for.
We are now 2 and a half months post surgery. Life has changed completely. I am still quite p'd off about the hand we have been dealt. But Kris is alive and we are coping. Yes the permanent trache is a major. So is the fact that his tongue is completely gone and even when he gets a speaking valve in 6 months time his speech will be difficult - to say the least - to understand. He has a permanent PEG, but amazingly he can swallow and half his Fortisip he takes via the mouth.
Maybe he/we are lucky that I am a practicing RN and none of his cares phase me.
What I am trying to say is that life is still good. We all adapt to lifes circumstances. Yes quality of life is different but it is not insurmountable. Life is still enjoyable and there is much to look forward to - an upcoming sons wedding and potential grandchildren.
Yes Kris's naked body looks different from all the surgery, but I dont care. He does have ongoing major shoulder problems but we are working on them. Communication is a problem but it is amazing how as human beings we manage to communicate with facial expressions and gestures as well as via the Ipad.
Do we regret having had this surgery -hell no. As a caregiver I will do anything to keep my man alive and to improve his quality of life. He is alive and we are living life.
Surround yourself with those who love and support you. Discuss your fears with them. Know that there is life after this major surgery. Then make your decision.
We will be here to support you whatever.
Tammy

Mars, I am amazed how often the words our doctors give us are not the best-case scenario, but the risks associated with the procedures they are suggesting. I think this is for informed consent. Unfortunately, this may be as a result of people who sue doctors because they were not informed of a "possible side-effect or risk", yet the doctor might have saved their life!

Currently, there are only limited sure things, and doctors must not over-sell their best-guess based on their knowledge, experience and your patient history.

All of the survivors here have experienced some of the risks or side-effects. From my perspective, I appreciate being informed what may happen to reduce the surprises and help me cope.

I will accept the risks and associated side-effects because I want to Live! The risk-to-reward ratio is just that high for me. I am going to beat cancer if it takes the rest of my life!

You are a survivor. You must fight to win!

Sincerely,

Ken

Hello Mars,

I understand your fears and concerns. In 2008 I had similar surgery to what your doctors describe. My experience was complicated by the extent of damage from the osteoradionecrosis (ORN). Radiotherapy killed about � of my lower mandible, and the tongue flap that was reconstructed after the tumor was removed in 2007. ORN wasn�t limited to the surface, or a small portion of bone for me. My mandible bone died from top to bottom. The extent of dead bone was the length of 11 teeth. Blood flow loss was spreading further through the bone. They removed jaw bone, 11 teeth, gums and the original tongue flap. I depended on a PEG tube for 3 � years.

The original tongue flap + floor of my mouth flap was reconstructed with tissue from my thigh. The second flap was taken from my hip area, as was bone to reconstruct my jaw. The second bilateral neck dissection was made over the first. I do not have a mobile tongue. The flap serves two functions. It is permanently sewn down to become the floor of my mouth + tongue flap. Since 2008 a prosthodondist and maxillofacial oral surgeon inserted implants and a titanium platform to create lower gums. A denture was designed to clip onto the titanium platform. The PEG was removed. I returned to work part time. My speech is good considering most of my oral cavity is artificial. Where the nerve was removed from my neck, my shoulder occasionally tightens, however my mobility is good. I regularly exercise my neck and lower face.

Further surgery on radiated tissue along with rehabilitation after a mandiblectomy can be tough, but you will work through issues step by step.

Please don�t hesitate to send a PM (personal message) if you have any questions.

Karen

Thank you all so much for your replies and words of advice. I have decided to have the surgery and go in later today for op tomorrow. I'm trying to be positive and hope for a good result. It helps knowing that I am not alone. I will update when I am able. Best wishes to you all. M

Good luck... It wont be an easy surgery but I find that it's an easier recovery than rads... Bring paper and a pen so you can communicate. Hugs! You'll get through. It!