Preparing for a partial glossectomy: What can I expect?

My experience with a partial glossectomy, tongue flap from thigh, and neck nodes may give you some insights. I had a drainage tube in my neck and thigh. Tongue felt very bulky in my mouth. Of course you will have IVs and will not be able to take anything by mouth. My pain was well controlled. If you have any questions, please let me know.

@tzitter, I hope you saw the helpful reply from @healthydeb. I'm also tagging fellow members like @badfish @kadjur @alpaca @rkaspet @rubagaddal @lja @niml @rho610 @mnmike @jeffvalvassori who also have experience with a partial glossectomy and can share their pre-surgery and recovery tips.

@tzitter, do you have any questions as you get ready for Thursday?

I had a partial glossectomy in February - I lost 1/3 of my tongue and had reconstruction with a free flap from my forearm. A graft from my thigh was used to repair the forearm. I spent a week in the hospital afterwards, 6 days of which were in ICU. I had a feeding tube and tracheostomy for a month. After the hospital I spent 3 weeks in a rehab facility because my husband and I were not comfortable with doing all the trach, feeding tube and wound care at home. I had to communicate in writing for a couple of weeks after surgery before I was allowed to speak. My flap is still too big for my liking after 6 months, but I can have it electively trimmed down in a few months if I decide to. I can eat most foods now, although slowly. Crumbly things stick in my mouth because I cannot move my tongue to the left. My speech is impaired but everyone says they can understand me OK. It is a rough surgery-mine was 6.75 hours. I also have experienced some hair thinning and breakage and shedding after about 3 months after surgery. My dermatologist said that is common and it will come back. I did not have to do chemo or radiation which was a huge relief. You might have to do speech and/or swallowing therapy. Best of luck to you. Let me know if you want more info.

I had a 2/3 tongue removal four years ago. The surgery was a whole day. Pain was manageable. The hardest parts of the week-long recovery for me were 1) tough to sleep with the swollen tongue, 2) hard to communicate- I chose my right arm for the donor site, and with the trach, I had no way to communicate for a few days apart from trying to write with my left hand.

The feeding tube annoyed my nose a bit, but worked very well and was not painful when they removed it.

You'll get through it. God bless!

I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from my first cancer (tonsil- 2008) as it is literally adjacent to it. That being said, I too had a lot of excess salvia/mucus but with Swallowing/ Speech Therapy and specialized Head & Neck PT, it definitely helped some and now that I am over 2 yrs. out and it is way better, however, still get some occasional if talking a lot and I don't keep my head level or up.

In addition, I chose the nose feeding tube which is temporary 10-14 days and get a swallowing/speech therapist now. Definitely tough on sleeping due to mucus draining so I had to sleep in my recliner until nose feeding tube came out. You will also have to be very aware of the higher chances of getting aspiration pneumonia and lymphedema after the surgery. I ended up in the ICU for 7 days 2-3 months later for having Aspiration Pneumonia- took 7 liters of infection out of my lung cavity.

I honestly don't remember much pain as at most I took only Advil or Tylenol and that was enough. I went out on disability at work for 32 weeks as I have to talk for the majority of my occupation.

You will get better.
Best,
Rob

It is a drastic surgery for sure. I am intersted in your speech now that you are 4 years out from surgery. Quite a milestone of good health for you!

@shane1954 I could written your post! Had identical surgery 6 months ago. 2 weeks hospital with without tracech and feeding tube. I had no idea the trouble I was in for. Eating had been a nightmare, lost 40 pounds. Eating better now, but still troublesome. They damaged my spinal accessory nerve and have been im extreme pain that came about 2 weeks after. Have been on pain meds and shoulder is drooped and deformed looking. Doing pt so there’s hope. Swallow therapy too.
They removed part of lower palette too, mouth feels rearranged.
The hair thing too. Good to hear it can come back. Didn’t have chemo or radiation. I think it would have killed me.
Just had 6 month mri and cancer free.
Wondered how old you are. I am 78.
Saw surgeon last week and pretty much said another 6 months for nerve and swallowing recovery. Lucked out not getting chemo/radiation. I have a lisp but can talk also.
It has been a nightmare recovery, didn’t want to tell that person who was asking about it.
Thank you for posting, was reassuring to read someone who had same surgery. the pain in clavical/ surgery made everything so hard.
Glad you’re doing well. Read about triming the flap, but. There will be no surgery again, won’t do it.
Thanks for posting and sharing.
All the best to you and hope all good things for you.
Cindy

@mnmike My experience very similar. But only 1/3 of my tongue replaced. I'm left handed so I could write. But by the 3rd day I could talk. Pain was well managed by Tylenol and ibuprofen.

Learn all you can about lymphedema. Ask for guidance from an OT or PT. Learn to self massage. I watch the YouTube videos by Kelli at Cancerrehabpt.com
Her YouTube channel has a playlist for head and neck cancer. Spend time in front of a mirror learning the massage technique and how your face is shaped so you can identify swelling post surgery. I had a hard time with that. But my swelling was often in the area where some lymph nodes were removed. The lymph fluid circulates similar to how blood circulates. So when lymph nodes are removed you are left with lymph that needs you to gently massage the area and drain the fluid. You'll need to wait for the area to heal but the massage will decrease both swelling and pain. Learning and practicing massage prior to surgery will set you up for managing your swelling and pain.
I was lucky in that my sense of taste returned about 2 weeks after surgery. But throughout my treatment if my lymphedema increased I would lose my sense of taste and the pain and numbness would increase. Self massage calmed it all down. I'm thinking it was the nerves in my face that were affected.
Also ask your,therapist about a face compression wrap or headpiece. That will keep your lymphedema in check. Mine brought me great comfort and I still wear it at night to keep my mouth closed as I sleep so mouth stays moist. I also use a lymph pump made by Tactile Medical.

@logi I was 71 when I had my surgery - turned 72 in June. About trimming the flap, it doesn't sound that bad. It is an outpatient surgery under anesthesia and only takes about an hour. It shouldn't really be painful because there is no feeling in the flap. I don't see my surgeon again until December and we will discuss it more then. I want to know realistically how much improvement I would see from doing it so I am not disappointed.