I will acknowledge that I am not the most patient person on the planet, however, I am getting aggravated by the swelling on my "new tongue" that seems to have hit stasis, and does not appear to be decreasing.

What was everyone else's experience with the flap swelling? I am 50% new and 50% old.

Tina, swelling can take months to go down. Its been only about a month since your surgery so it will get better. Did you have a free flap? If so all that tissue takes a long time to settle down. I know it stinks! I had a different type of surgery, my lower half of my jaw removed and I had terrible swelling for the first few months. My doc told me with invasive surgeries it can take a full year for someone to adjust. After a year they can go in a 'debulk' things. So give it time and if it still seems too big in a few months speak to your doc about thinning it out.

Best wishes!

Christine, thanks, but I was hoping for a bit more specific.

Any tongue cancer folks want to weigh in on this in their experience?

I realize everyone is different, but I see many similarities on other issues, so I am hoping to get a better range.

I know this may not seem important in the scheme of things, but focusing on these types of things helps me stay positive and not thinking about the hard stuff still to come.

I have had tongue cancer twice with two surgeries. Yes, the swelling does go down - eventually but then seemingly for no reason you will get a bout of "football tongue". Go figure. You should also be exercising what tongue you have left, and my speech pathologist said the best exercises are eating and talking. Try to accept that this is going to be a variable condition.

Having said that, keep an eye out for swelling and pain - get that checked right away and nexttime you see your oncologists tell them about the swelling, but I am quite sure you will hear the same words Christine offered about a short time from surgery.

Hope you see some improvement in the next month or two.

Hugs

Donna

I understand that you are concerned but as has been pointed out by Christine and Donna your surgery is recent.
I also had the debulking and even liposuction done on the flap after everything had settled around the 12 month�s mark. Mine is around 1/3 flap and as was pointed out the surgeons can take away but not put back.
Even now after 6 years it feels a little swollen for various reasons including when I am stressed, tired, have not had any hydration for a while, first thing in the morning and when I actually think about it. Don�t notice it at all when I am preoccupied with something else.
Also hoping it improves with time but make sure you mention it at your visits.
Gabriele

Thanks guys, there is no pain, and the swelling hasn't gotten more, just doesn't seem to be dropping as it was. I'll raise it Thursday with the doc, and get his take.

I have been talking up a storm and telling everyone it's doctors orders. As a lawyer there is really no possibility of shutting me up, so no worries there (get it - no worries - Gabrielle is in Australia ...) ok that was a bit lame. I'm running low on good material, must be tired.

I'll keep everyone posted later this week.

Hi Tina,

The surgeons always make the 'flap' larger than what the actual tongue was.

This is because the flap shrinks quite considerably when you start radiotherapy, and returns to a 'normal' size.

Hence, I am assuming that it is not the actual swelling (as you would notice pain if that was the case) but intentionally cut large having factored in Radiotherapy.

Jen had the same issue before treatment started, and the size of the tongue & flap is now on par with a normal tongue.

Hope that helps.

Jay

Hi Tina, I also had 50+% of my tongue removed and reconstructed. The first couple months after surgery, I felt like my flap was huge! i was constantly biting on it in my sleep, which turned into a whole different issue I won't bore you with at this time! Anyway, everyone kept telling me how good looking my flap was (which my family and I always liked to joke about, wondering what a bad flap would look like), but it still felt huge. Doctors kept telling me the flap would shrink once I had radiation, but I was skeptical.

Well, it ended up shrinking a ton! I wish I had a little more flap now, as I can't stick my tongue out past my teeth line.

One more positive thing to look forward to, is the color of it eventually changed to the color of my real tongue! If it wasn't for the crease down the middle of my tongue (which my surgeon has told me he can fix, but I am not ready for it yet), my tongue looks somewhat normal.

Good luck! Feel free to send me a PM if you want to talk about any specifics, since it seems your diagnosis and surgery were very similar to mine.

I'm assuming you had a neck dissection. That comes into play as well. Lymphedema aslo causes a back up of fluid. Eventually as new pathways develop (most likely with the help of lymphatic massage) it will not be as swollen. I also finds it responds to exercise... Increased circulation.. and certain foods set it off.
:o)Also sleep position!

Yep, bilateral radical neck dissection. I have major neck swelling, and numb in both ears, entire neck and tops of shoulders. I'll be talking to the doc about lymphatic massage.

What foods help?

What sleep position?

I am motivated to do anything to improve my status. I am anal about my physio, and have recouped a lot of my range of motion already.

Impart your wisdom sensei and this grasshopper will listen!

Hi Tina,

EAT EVERYTHING AND ANYTHING. Even if you are full - chow down those supplementary drinks in-between meals.

My tip to you would be to put on as much weight as possible prior to starting treatment. Do not worry about what to eat - whatever packs the most calories that you can eat is the best food.

Tip: Get yourself a blender (we have one of those magic bullet ones and it is very good) and make your own shakes.

As for sleep - make sure you avoid sleeping on your belly. Apart from that - all the positions should be fine.

Best of luck!

Jay

Lymphatic massage - get permission from your dr. definitely then wait. Personally I would wait until all rads and chemo are done... why? Well frankly I am paranoid maybe. When I first heard about it my concern was, if there is still some microscopic cancer in my head do I really want to encourage the movement of that fluid throughout my body??? So I waited until after rads and chemo were done, my neck had healed (though frankly I had no blistering or redness... mostly I just tanned there) then I started it. After researching recurrence rates related to lyphatic massage. (there was no correlation between lymphatic massage use and increase in recurrence). But as I said I would wait until the chemo and rads have had a chance to do their jobs.

Foods, acidic and irritating foods cause swelling. stick to soft non acidic foods but some that require tongue movement and manipulation. Movement of your tongue should help decrease it. Go for a walk, a few times a day, try yoga, maybe some cardio (went to the gym up to week three.)

Sleep- on the bad side. helps compress the area.

I was exactly like you... went to physio for my shoulder asap, up to about week three of rads, then started again about three weeks after treatment finished.

Now I am at about 98% though I think I slept on it wrong a few days ago so it feels like it used to a few years ago when I had a pulled rotator cuff. :oP

take care!!!

Thanks guys. I am eating solid food, and as much as I can, although I do have to be careful, if I overeat, it makes me sick, so I can't actually overdo it, or I'll lose my lunch.

Can't do the ensure/boost. That's what they fed me through the ng and I threw up for 2 days. Trust me, as bad as the stuff tastes going down, it is way worse coming back up....I can't even smell the stuff now without gagging.

I have the Magic Bullet, and a blender, and a food processor, but I am eating totally normally. Bread is a bit difficult as it sticks to the roof of my mouth, but I still eat it. I'm saving the shakes for when I can't manage solid foods (like the weeks before surgery), as I got pretty bored of the liquid diet. Soup later, chicken now. And gravy.....mmmmm, gravy.

I am all over evey tongue exercise - I have a friend who's a speech path and she's helping me, and have a gym in building that I am slowing building up workouts on.

Sleeping, I flip between the 2 sides, but I will work on staying on the left more.

Tomorrow's the big day for the pathology results....

Sounds like you are doing awesome! Fingers crossed tomorrow is good news... Large margins, and minimal spread or no spread! hugs! And ps... Totally agree on the boost. Make my own protein shake daily. Tres... Delish!