Reoccurrence of tongue surgery after surgery

BeckiB

Hi,

I have had a total of 6 tongue surgeries. The first one was a glossectomy with a skin graft. The lesions that were removed were all severe dysplasia, but the 6th surgery was cancer. The Dr is going to keep a close eye on me, like he’s been doing. My question is: Have any of you had reoccurring tongue cancer after getting clear margins? Thank you in advance.

wbcgaruss

Hello, Becki, and welcome to the CSN H&N discussion forum.

In my case, I had a small piece of my tongue removed with clear margins and have never had tongue cancer again. I did have lymph node cancer about a year and a half after that and the surgeon and care team that operated on me and my ENT felt this came from my tongue cancer. Apparently, some errant cancer cells migrated to my lymph node. I did not have follow-up radiation after my tongue cancer because my ENT felt we were safe with surgery only. And he was trying to hold off on radiation because I had previously been radiated for throat cancer. I did have radiation following the lymph node cancer though, the second time that I have had radiation.

I certainly hope you are done with dysplasia and cancer for good.

Wishing You The Best

Take Care, God Bless

Russ

BeckiB

https://csn.cancer.org/discussion/comment/1709706#Comment_1709706

Thank you so much for your reply. I’ve been reading a lot of the stories and it seems almost all of the people with tongue cancer also have it in their lymph nodes. I’m having a CT done in a few weeks.

ProustLover

Dear Becki - Sorry to hear what you've gone through...six surgeries is tough. My husband's leukoplakia was monitored for years before it turned into cancer and was removed. There were clear margins, but (like with Russ) errant cell(s) migrated into lymph nodes. The lump in his neck developed about a year and a half after surgery. So then there was neck dissection, radiation, and pretty aggressive chemo. Over he course of the next three years, at 12-month intervals, new high-grade dyplasias appeared on his tongue. The dysplasias were described as "new" and not recurrences of the original cancer. Each was treated with CO2 laser ablation. Healing times varied a lot. I'm happy to say that the third ablation was almost exactly 2 years ago now, and his tongue does seem stable (fingers crossed). He sees the surgeon and dental oncologist regularly. So I guess my message is that even after a long drawn-out ordeal, things can improve and stay stable. Good luck with the CT!

BeckiB

My mouth cancer is squamous cell. It was actually discovered in the floor of my mouth. Your poor husband has been through so much. I’m so happy to hear he is 2 years free. I hope it continues to stay away. Thanks so much for replying.

will6103

Hello,

I had basically the same situation where I had a glassectomy with a graft. My question would be were did they take the graft from when they rebuilt the tongue? I had mine taken from my wrist but I continue to have tingling almost 2 years after the fact.

When they did my surgery they also removed the lymph nodes on that side of the neck to prevent future migration of the cancer. Once that somewhat healed they followed up with 6 weeks of radiation therapy. That left me with burns on my neck and pain in the mouth but it does eventually get better. Keep the positive mindset!

BeckiB

They took it from my leg. I had a CT of my neck, all looked good.