Hi,
I was diagnosed with SCC in April 2016 and had a partial glossectomy with reconstructive surgery of the left front part of my tongue on 5/9/16. I had 30 rads no chemo to treat nerve invasion, and finished my last treatment on 7/30/16. The reconstructed tongue flap has been a little numb, as expected.

But about a month ago, 5 months post-surgery, I noticed the whole tip of my tongue (flap plus "normal" part) started to feel a little numb and tingly. I didn't notice any bumps or anything unusual. It's felt the same for over a month now. Has anyone else experienced this? I went to my ENT last week and he said it's nothing to worry about, could be the nerves reconnecting. I had thought he was going to order me a PET/CT scan since it's been 3 months post-rads, but he said I didn't need one yet and he'd check on my tongue in a month.

I spoke to another patient of his who had the same surgery and rads a year ago, and he said he told her to get an MRI instead of PET/CT scan at 6 months post-rads, since she'd already had enough radiation. I'm assuming he'll do the same with me.

The reason I'm worried is that a few days before my surgery, my tongue started to feel a little numb and tingly. I told my ENT right before I was about to have surgery, and he'd said that it wasn't a good sign. I'd appreciate hearing feedback from anyone who's had similar tongue numbness.

I also just noticed yesterday that there is a hard lump in the middle of my tongue, right next to the flap edge. I don't recall feeling it before, but by now, I don't remember what a "normal" tongue feels like. I'm hoping it is scar tissue...

Aloha,
Joanne

Hi Joanne! Im sorry you are having some "issues" with your new tongue. At 4 months post rads, you are still well within the recovery phase where you experience some ups and downs with a few setbacks.

Im always one to err on the side of caution. I suggest making an appointment with your ENT to get checked out. It could be nothing serious but it must be bothering you enough to cause enough concern for you to make a post on the forum. The lump could be scar tissue. Have you been talking more than normal? Overuse could cause the inflammation. By seeing your ENT, they should be able to determine if its scar tissue or something serious that needs attention.

Please keep us posted on how this turns out. Best wishes!!!

Welcome Joanne! Sorry for your recent troubles, but you joined the best place around, and Christine has given the best advise and insight. I haven't had this particular type surgery, but plenty of others, including dozens of scans, biopsies.

What does your radiation oncologist say? Sometimes they may order one sooner or a different type scan depending on what their looking for, patient needs, and some like to switch between scans like CT then next time a PET/CT, but I can't have contrast, so have an MRI instead.

There is no general consensus on post treatment scanning, other than 3-6 months post treatment, according to NCCN guidlines, but that's for cancers of the oropharynx, larynx, hypo-pharynx with T3, T4 disease only, but not for oral cancer, so it depends on your doctor and facility. Mine do scanning 3-6 months post treatment and every 6 months after, do far. Hopefully I'll graduate to once a year.

I had problems biting my tongue or running sharp tooth causing an ulcer, was so thought, but that was punch biopsied in the ENT office being it was palpable and visible to do so without a scan. Sometimes medications may cause tongue issues. I had a few that said can cause tongue swelling, and metallic taste, and tongue issues with thrush to mention a few, so it really can be anything besides cancer, but you're doing the right thing seeing your doctors.

Good luck and hope this helps.

JoYo -

I think if you ask fifty people diagnosed with the same or similar SCC of the tongue, you would probably get 30 different responses.....

Here's mine,

Prior to both resections my tongue felt thick and did not respond well to movement. In both cases there was a lump present.

You should not wait. have the lump checked out. Perhaps request a needle biopsy, if possible.

The numbness could be related to the lump OR just nerve re-generation

Either way, get yourself in front of an ENT. Preferably the one that knows your history and is competent in treating oral cancers.

Good Luck

Thank you all for your helpful comments and advice! My next appointment with my ENT is on 11/30, but I'll call tomorrow and see if I can see him sooner. The most important thing I have learned about oral cancer from this forum is to get questionable symptoms checked out ASAP!

Update: I went to see my ENT last week. He told me not to worry and that he thinks the hard tissue is normal, but he did order an MRI for me that I'll be doing on Monday. No matter what the results are, I'll just be glad to know.

Hi, I just wanted to share my good news that my MRI I had on Monday came back negative! I didn't realize how much scanxiety I had until after the doctor told me the news, and I just started to cry. I was just resigning myself all week (month) to hear bad news, so it was such a relief to hear the opposite, for once!

Thank you all again for your support. I'm so grateful for this forum.

Good for you... Now enjoy the holidays!

JoYo,

Great news, enjoy your day!!!!!

Congrats Jo!!! Thanks for sharing your update with us! Thats the news we've all been wait to hear. I completely understand being brought to tears during a doctors appointment. You probably have been worrying more than you thought and carrying this burden around on your shoulders for too long.

Now you can focus on your recovery. Keep working on getting the best nutrition you can with special attention being paid to your protein intake and calories. You still need to take in extra calories and higher amounts of protein every day to help speed your healing. It can take a year or 2 before your body is completely recovered from the major surgery. Protein speeds healing, check with your doc if its ok to add high protein whey powder to your diet.

Best wishes with continued progress in your recovery

Beautiful news ! Thanks for the update. Enjoy the holidays !

Thank you all for your kind messages and advice! I use the whey powder sometimes in smoothies, but I prefer adding hydrolyzed collagen and heavy cream to my soups for added protein. Although the collagen is missing 2 amino acids, I think it's better than nothing. It doesn't add noticeable flavor or smell to drinks or soups, and dissolves easily in water. Have you tried this product?