Submandicular glands

stevenpepe

Hello all,

April 1 will be my one year anniversary of my first surgery for tongue cancer. I'm doing well and have my first post-second treatment PET scan in 2 weeks.

I had both glands removed with each of my 2 neck dissections. For those who got their saliva back, did you have one or both glands removed? I can't see how saliva production can improve without them. I'm getting used to eating with water but I would love to have a saliva success story to brag about.

CSmiley

Twins

Steven, by looking at your profile, I have the same thing you do... SCC left, underside of tongue and lymph nodes in neck. I am being seen at Banner UMC (University of Arizona). I am scheduled for surgery on April 12th following 21 days of oral medications as part of a drug trial. I am being told I will have the tumor removed from my tongue and all six lymph nodes removed from my neck. I am being told that I should still have some saliva production from the other glands in my mouth. Is this not what you have experienced? Any advice going into this? I'm being told radiation is a guarantee with the possibility of chemo. I waited much longer between noticing the growth on my tongue to going to the dentist than you did. My tumor is currently the size of a buckle, cut in half by the biopsy and unable to heal. It hurts constantly, but not nearly as bad as what I am in for...I'm sure.

 

Cheers, Chris

CivilMatt

I am all filled up with more rads then my mouth can hold

Steven,

It has been a tough year for you and I guess spitting sounds like a memory.  At 5 years I see improvements to saliva production, but it is nowhere near what it once was.  I usually go through 3 glasses of sweet tea when I am eating out and multiple glasses of water when I am home.  I just get used to it, to try and go without is a down payment on chocking or struggling with not choking.  Then again, if I am careful and take small bites I can carefully eat somethings with the littlest of sips.  I have become an expert on calculating swallows down to the last drop.

I hope you the best of luck with your upcoming doctor visits.

Matt

stevenpepe

CivilMatt said:

I am all filled up with more rads then my mouth can hold

Steven,

It has been a tough year for you and I guess spitting sounds like a memory.  At 5 years I see improvements to saliva production, but it is nowhere near what it once was.  I usually go through 3 glasses of sweet tea when I am eating out and multiple glasses of water when I am home.  I just get used to it, to try and go without is a down payment on chocking or struggling with not choking.  Then again, if I am careful and take small bites I can carefully eat somethings with the littlest of sips.  I have become an expert on calculating swallows down to the last drop.

I hope you the best of luck with your upcoming doctor visits.

Matt

Hi Matt,

Hi Matt,

 

Nice to see you're doing well. So it sounds like this saliva issue is here to stay. Did you have your submandicular glands removed?

stevenpepe

Hi Chris,

Hi Chris,

One thing I would ask my doctor, knowing what I know now, is to look closely at the other side of your neck. They say it's rare for SCC of the tongue to jump to the nodes on the opposite side of the neck, but it happened in my case. It appears the right side was growing from the beginning, but was not picked up on the scans. Even after radiation on my entire neck.

Turns out, the tumor completely encapsulated one node, requiring a radical dissection. The result was a heavier scarred area than on the left side. So far, I am not experiencing any issues.

Radiation is worse than chemo. Expect at least 30 daily sessions of it. You will have it directly in your mouth and neck and it won't be pretty. Expect severe burns on both tongue and neck, dry mouth, difficulty swallowing (prepare to subsist on liquids), mucositis (excessive mucous in your throat, which can cause vomiting), and some difficulty speaking. Fatigue will be a major issue around 4 weeks into treatment.

Once it's done, effects will continue, but get better as the months go by. Fatigue seems to be the biggest issue for me, long-term, but I am getting my energy back little by little. The skin around your neck will get stiff from fibrosis, which can soften in time and with massage therapy. I am doing both speech and massage therapy right now. Your tumor sounds much larger than mine so anticipate speech issues.

This is what I experienced, but I got through it and you will too. Everyone has different experiences, so some may be easier on you than others.

I went through this ordeal twice in a 6-month time span, and so far, I've survived. Hopefully, yours will be one and done. Good luck with everything and let us know how you do.

Oh, and by the way, you'll never have to shave again. At least not the same way you're used to. My beloved goatee is all but gone now.

CSmiley

Take them all...

Steven, 

Thanks for the information. I'm trying my best to wrap my mind around my immediate future. Ive spent the last three weeks eating like a horse...all my favorite foods. I know this is not going to be fun.

My surgeon plans to take all six lymph nodes in my neck. There is one node that the docs know for sure is cancerous as it has necrotic tissue inside the enlarged growth. The other twonon themleftside also appear to have some extension to them which indicates cancer growth. On the right sida, the three nodes are all slightly larger than they should be. Their fix is to remove all of them. The doc's largest concern is that she cannot feel the nodes. She fears that my large, firefighter neck will require a lot of digging around through the muscle tissue to find the nodes. I don't know if this makes the pain and/or recovery worse?!?

stevenpepe

So it sounds like they are

So it sounds like they are doing both sides of your neck. I would imagine they would remove most, if not all of them. My first surgery, they removed 22 nodes on the left. One had cancer. The right side they took another 24. One had a lot of cancer. They typically remove the first 3 levels of nodes just to be safe. 

Eat all of those favorite foods now because that will sadly change and may never be the same. It gets better, but never like it was pre cancer. Gaining some weight now is a good idea. You will definitely lose some. I'm a small guy and was about 160 prior to cancer. I lost a total of 20 lbs since which is a lot for someone my size.

I know none of this sounds pleasant, but it's what we all go through on our journey to beating this thing.

Believe it or not, I didn't experience much pain from either surgery. They drug you up pretty well and provide painkillers. The most pain came after my first round of rads. I took a shot of Oxycodone before bed for a few weeks.