Hi all...
I am 35 and saw my pcp for a sore on my tongue that wasn't getting better. He referred me to an ent. They biopsied the sore but only got inflammation so the biopsy did not give any helpful information. They referred me to a facial plastic surgeon who did a partial glossectomy to remove the lesion. I was shocked when a week later (6/23/18) the results came back as squamous cell cancer of my tongue. I had zero risk factors. She linked me quickly with a head and neck oncologist. The Dr did not suspect cancer so she did not get all of it with my first surgery. I had a hemiglossectomy and neck dissection on 7/17/18. I am not exactly clear on terminology but I had 57 lymph nodes removed and nothing more. Pathology showed no cancer in my lymph nodes and clean margins in my tongue. My oncologist is following me closely but not recommending any further treatment.

I am almost 3 weeks post op. I thought at this point I would be dealing with the emotional side of this massive scar across my neck. I wasn't prepared for the tightness of my neck and the nerve pain in my jaw. The surgeon told me in advance about the nerve in my face and that I would have a crooked smile for a little bit. I naively thought I would be back to baseline by now. As I search message boards and such, I get discouraged to hear that the tightness doesnt always go away. I assume this is lympedema but I don't know for sure.

Emotionally... this was all so fast. I hadn't fully grasped having cancer and now I am cancer free. If I wasn't uncomfortable all the time it would feel like a bad dream. Any words of optimism and encouragement are appreciated. I am definitely feeling not myself...

Thanks,

Erin

I think sometimes that Oral Cancer must be one of the weirdest cancers that way... you don't even know you have it and it's gone by the time you do, sometimes ... that's how my first time was. I had a little more time to process, as we waited a couple more months for the neck dissection (I have no idea why, at this point, it's all hazy), but that was clear, too, and it was good. When you are healed (and I do mean really healed), see if you can get into a therapist ... a feeding and speech therapist. You may not feel like you need much help with speech and feeding (which would be awesome!), but mine also had some GREAT massage techniques for reducing the swelling in the neck and also working out the scar tissue, which CAN get better if you work at it the right way. Since you haven't had radiation, this is a good thing and should mean you have a better chance of it getting closer to 'normal', though you're going to want to watch for the lymphedema part for a long while. (I did have radiation later, so that may have impacted how much scar tissue I had to fix ... but it *is* something that certain therapists are trained for ... it doesn't hurt to ask.)

And ((hugs)). You definitely found a great forum for questions, so you're ahead of the game that way!

Give yourself time, you're 3 weeks out, healing takes a while. I did not have neck dissection but did have radiation to the neck and tongue. I am 3 months out from rad and still feels weird. You just had major surgery to your neck, so it will take a while to settle down. Therapy might help, ask your doctor. There are local support groups that meet all over the US, if you feel talking to survivors would help. https://www.spohnc.org/local_chapters.php Hang in there and always come back here to ask questions.

My dad had a neck dissection and part of his jaw removed in May. The scar has healed so well. Now, two months later, it looks like a wrinkle in his neck. I hope that with time, yours will heal up too! People dont even notice it unless he points it out. Of course, he is quite aware of it and feels self concious sometimes. I think he still looks just like my dad.

Erin, welcome to OCF! Im sorry you have a need for our help but we will always do our best to help you with info and support. If you have not yet seen an oncologist I suggest doing so asap. An oncologist may need further tests to ensure every teeny tiny cancerous cell has been removed. Hopefully you will not need any further treatment! We're here for you no matter what path this takes. By seeing the oncologist they can give you a much better assessment of what you have already been thru as well.

Best wishes with your continued recovery!!!

Hi Erin,

healing from a neck dissection takes time. I had mine almost a year ago and I’m still healing. It took me almost 2 months of physical therapy to be able to turn my head or to look up just a little. Today, I would say I have 95% flexibility back so don’t think what you are feeling now is what will be. I didn’t have a crooked smile but the side of my mouth (the side I had the dissection) would randomly turn down and freak out my friends for months after surgery but now it doesn’t do that anymore. What I’m trying to say is that 3 weeks after a neck dissection is the equivalent of 3 days after other surgeries. It takes time, patience and a lot of physical therapy to get close to how it was before. I recommend you get in contact with a physical therapist. Mine noticed “problems” I didn’t and helped me correct them before they could bother me too much.

The same thing goes for the emotional healing. It takes time but you will heal. I had a counselor at the hospital that was amazing. She helped me take control of negative thoughts and to stop them from spiralling out of control and to put things into perspective. I know not everyone is comfortable with the idea of talking to counsellors or therapists but it’s something to consider.