I am new to this forum as I was just recently diagnosed with SCC of the right lateral side of my tongue. I’m a 40 y/o single mom, former smoker, nurse who’s scared as hell!!! I am scheduled for a dissection and laser tongue surgery on 5/22. I have NEVER had any kind of surgery & I'm scared!! Any words of advice for me?? What should I expect?

My hubby had surgery for base of tongue. Found out cancer was really in lingual tonsil, tongue was clean. Recovery from surgery was rough for first week. Day 4-7 were the worst because he let himself get behind pain meds and then stopped eating and drinking sufficiently. My advise, stay ahead of the pain so you don’t stop drinking. The night it got really bad took 2 dilaudid (on advise from oncall doctor) and got rest. The next am h restarted vaping cannabis and that really got control of pain, did great after that. He said the liquid Tylenol helped so much more than the dilaudid but he never took a single Med prior to this surgery.

Hello

I understand well how you feel. I just had similar surgery last Monday - removal of the cancerous part (left edge) of my tongue and left neck dissection. I was discharged the next day.

For me my fears replaced by a strong faith. I was fortunate to have a great doctor, wonderful friends, family, and coworkers and of course my loving wife. And I cannot explain except the aggressive surgery thought to be needed was not.

Talk to me if you like, AmazinNurse, we're all in this together.

AmazingNurse, I see you are in FL.
I've posted this before and I hope it may be of help to you.


Based on my experience having had two operations for oral cancer since 2003, I would like to suggest four thoughts for newcomers.

1) Since oral cancer hits less than 1% of the population, get professional care from a "Comprehensive Cancer Center" (CCC) that specializes in cancer and has oral cancer specialists on staff.

2) Don’t hesitate to travel extra hours to such a center-your disease can be life threatening. If distance worries you, see 3 below.

3) Follow-on care may be done at a location which the CCC works with and is nearer to you.

4) Don’t wait to get help, and don’t second guess expert opinion, but if concerned do get a second professional opinion.

Good luck, Tom (and Go Gators-oops hope you're not FSU)

Our stories are similar as I also had tongue cancer. I am 40 years old and had my partial glossectomy to remove part of the left side of my oral tongue due to squamous cell carcinoma and left side neck dissection to remove lymph nodes to check if cancer had spread. My surgery was October 1st of last year. I've never smoked and very rarely ever drank.

I stayed overnight in the hospital. After surgery I used syringes to shoot soups and hot cereal into the back of my throat to help me swallow because my tongue had a 'bolster' sewn to it to allow it to heal. The bolster is a big chunk of gauze that basically makes eating and speaking a bit challenging. The bolster comes out after about a week then you get to learn how to speak and eat with your new tongue. Since I also had a neck dissection, they used skin from my neck to close the wound on my tongue.

I speak rather well I'm told, although I do have a lisp and there was just no way around that. I lost a fourth of my tongue.

I hope that's given you a little glimpse of what's ahead. Good luck to you!

Thank you all for your responses. I have been assured by the surgeon that he is NOT going to have to remove a lot of my tongue so, it will not affect my speech or my ability to talk. I’m super scared about the neck dissection & the drainage tube afterwards!!! I learned the hard way, to stay on top of the pain and take the pain meds as prescribed especially the first few days. After my biopsy I didn’t take pain meds at first because I didn’t think I needed them. Then of course late one night the pain kicked in and I was in so much pain!!! It took hours for the pain meds to kick in, big mistake. I was told that I am going to have a 2-3 day hospital stay because of the drainage tube placement after the surgery. I’m determined to remain strong & on top.,,. My kids need me!!!

Virgomom,
My surgeon never mentioned a bolster or having to use skin from my neck to graph to my tongue. Was this something discussed with you prior to your surgery?

Thank you for your help. I am blessed because the surgeon they referred me to is actually a specialist in head & neck cancers. His team specializes in this & so does the hospital & staff where my surgery will be performed. I’ve been through the whole cancer thing with my mom & we always sought out specialist no matter the distance. Thanks your your reply!!!

Why was the aggressive surgery not necessary? What did your pathology report say?

Sorry I missed this and to answer your question, yes, the surgeon did tell me ahead of time that he planned to use extra skin from my neck to 'close' the area they cut the cancer from. I was not aware the bolster was going to be sutured to my tongue but that wouldn't of done me any good probably to know that ahead of time anyway.

I see your surgery was a few days ago, hoping your back home by now and resting comfortably. I was able to be discharged the day after my surgery with specific instructions on how to care for the drainage tube so hopefully they did the same with you and allowed you to go home to your family!