Hello All,,

It's been a month since the end of chemo and radiation. The mucositis is still bad but lessening.

I have the entire inside of my mandible filled with a tumor underneath and including my tongue. The bottom of the tumor curls around the endge of my mandible around the bone. I have a small pain just below my right clavicle...I'm worried it could have spread down there.

I'm told by my ENT that surgery is my last option and I have an appointment with one of the best oral surgical oncologists in Utah.

generally, if there is just a small spread out of the original site, like down my neck to my clavicle, will they attempt the operation?

Also, at what point is your mandible bone in trouble? Will they attempt to liberate the bone from any cancer encasing it? I really just need somsone who'se had this operation before. I'm scared either way...

I'm having a first consult this friday for possible/likely near total glossesctomy and...incidentally my larynx feels horrible as I can swallow but it does hurt. My tongue and mandible are filled with a flattened tennis ball sized tumor. Multiple nodes on my neck are cancerous as well. In the last few days I have just begun feeling a pain below my right clavical. Would a spread just outside the neck preclude them from operating on the cancer? I'm scared that they won't operate. I'm also scared that if they do, they might take bone. I have no idea at what point teh bone gets compromised. Does anyone have experience with this?

Thanks, JC

Hello JC. I'm so sorry that you have to deal with this.
It is scary and especially so when you dont really know/ understand what is happening. It is so easy for our minds to take us to horrible places and to imagine the worst. My advice is to wait until you have seen the surgeon, then you will be clearer as to what is going on and what the plan is.
I would also recommend that you get a second opinion before you commit to any surgery. This is best done at a Comprehensive Cancer Center ( CCC ). These centres have a multidisciplinary approach and your case is discussed by a tumour board before a treatment consensus is agreed. These centres see many many patients with your type of cancer and research has proven that they get the best outcomes for their patients.
Keep us posted. We are here to help and support you.
Tammy

JC, your posts are very similar so I combined them into one thread.

Your case sounds like it could be a complicated one. When dealing with complicated cases, a patient should seek out the most skilled medical professionals they can get. In my previous post, I wrote about going to a CCC if possible. At the very least you should get a second opinion.

NCI CCC list


Since this could be a recurrence of the original disease, I would urge you to consider going to one of the major CCCs. If your finances are part of this equation, some airlines fly cancer patients for free. There are places to stay for free or very low cost. I can point you in the right direction if you need this, let me know.

Right now you probably still feel pretty crappy from what you just went thru. Focus on your intake with at least 2500 calories and 48-64 oz of water daily. If you can push yourself to take in more calories that will help you bounce back quicker too. Rads can really wipe you out so Im concerned about your stamina going into another round of this so quickly.

I know its very stressful when you are first diagnosed, especially after just going thru rads. I remember how my head was spinning and I didnt know which way to turn. Take a deep breath and try your very best to take it one step at a time. The unknown is always the most scary. If you are feeling like this is a bit overwhelming, you arent alone. Many OC patients (and many caregivers too) will take anxiety meds to help get them thru the difficult weeks, sometimes months.

Stick with us and we will try our very best to help you.

Hey there.. surgery should have been the first option based on the type and location of the cancer but sometimes they will work with chemo and rads first to try and shrink it seeing as it appears to be quite invasive. No one here is a dr. However based on what you've posted I would be willing to bet they will be replacing your mandible. It's not an easy surgery but there are quite a few people here who have had it done.

I'm sure some of them will share their experiences.

chances are if they are removing your mandible they will rebuild it with a bone from your leg.

This whole procedure is very intricate, as others here have mentioned you should be at a CCC - a good one. And your surgeon needs to be an ENT who deals exclusively with oral cancer. A plastic surgeon should also be part of a plan as your ENT removes the tissue and cancer, and the plastics guy will rebuild your mandible, and tongue.

hugs and please keep us up to date on what is happening with you.