Hi there,
My husband recently had a near total glossectomy this November. I am looking to connect with other patients that have been through the same surgery. Please contact me here on this thread or message me please.

Hello,
My husband Kris had a total glossectomy 22 months ago.
He is doing great.
Anything you want to ask, I will do my best to help you with.
Tammy

Hi Tammy,
I am glad ur husband is doing well. We are just at the beginning of the journey now. In fact, treatment starts Monday.
How is ur husband doing now in terms of speech and swallow? At the moment, my husband wears a trache and takes nothinh orally. Only via g-tube.

Hello,
Kris also had a total laryngectomy with permanent trache/stoma opening on his neck. So, now his airway and oesophagus - swallowing tube - are completely separated. Swallowing for Kris may be a bit less complicated than for your husband as in Kris's case there is no risk of aspiration. Anything he swallows can not possibly go into his lungs.
Has your Husband had a swallow study done to see if he aspirates? Is this why he still has a trachy and can not yet take anything orally?
Kris had a swallow study about 3 weeks postop to ensure all the surgery had healed with no leaks. He then simply started swallowing. Small amounts like 20 mls to begin with, but very quickly he progressed to fluids by the cup full. He just "drinks" a mouthful, tips his head back and swallows and it all goes down.
The SLT did work with him to get him to take thicker foods like yoghurt and apple puree and he could swallow these. But he hates the sensation of still having these in his mouth as without the tongue to clean up the oral cavity there does remain a coating. He could probably then clean it up with water etc. but he just wont.
Speech for Kris is a lot trickier than your husbands will be. Your husband still has his voice box so can still make sound - once his trachy is removed. Prior to Kris's surgery the surgeon told me that of course he could still talk - you can try it yourself. Just keep your tongue still while talking. It is still very understandable isnt it.
Kris has a special tube called a TEP inserted at the back of his stoma site which goes through the tracheal wall. He then covers the stoma with a finger and breathes out through the TEP which makes sound as it vibrates on the tracheal wall. Listening and understanding Kris is about getting your ear in. Same for your husband, you will have to really listen to what he is saying, like understanding a foreign accent. The good news is you and most other people will understand his speech relatively easily.
What treatment does your husband start Monday? Is he having chemo and radiation? This could also be why he still has the G-tube and trachy.
Take care,
Tammy

I am going to be having this same surgery myself within the next few weeks. I see the surgeon on January 7th for scheduling. It sounds like I'll be following the same path as your husband. The surgeon expects to remove most or all of my tongue, but should be able to preserve my larnyx.

Good luck to you and your husband. I hope all goes well in his treatments. It's good to know of someone else on the same journey.

I am so sorry to hear that Roger. I wish you all the best. We are scared out of our minds. Surgery was nov 25 and radiation starts tomo. We are anxious to know what the speech and swallow implications will be. And we are praying that radiation and chemo side effects are tolerable. My husband is only 39 years old.

Hi Tammy
My husbands trache was kept in after surgery because of swelling concerns. They say that radiation causes swelling so it's for safety reasons that they kept it in.
Speech therapy team also not very keen on doing a swallow test because they say things( the mouth) could change during and after radiation so the results are not a true indication of what is true in terms of swallowing.
He's going to be given 35 radiation treatments and 3 cisplastin. How did your husband handle radiation and chemo side effects? Were they bearable?

Nina,
Kris had his radiation and chemo as the first line of treatment. He sailed through with not too many side effects really.
However he had a recurrence of his tumour 11 months post treatment. This neccesitated the salvage surgery of total glossectomy etc. Following the surgery, Kris has had no further treatment of either chemo ( which I know he would never do again ), or radiation. I did ask about further radiation but the tumour board felt it was not required.
I am a bit suprised that the SLT's are not keen to get your husband swallowing. The swallowing muscles forget very quickly how to swallow and generally the "teams" encourage swallowing of at least some fluids on a daily basis. Kris managed to swallow all the way through his radiation treatment and only used his PEG as a backup. He still lost 20kgs.
However , I don't know your husbands circumstances so you have to be guided by your team. I would though, ask again about the swallowing. You will read many posts here from others who now have long term swallowing difficulties.
You will both get through this. One day at a time.
Tammy

Thank you Nina - Yes, I am scared too. Anyone in the circumstances are are in would be crazy to not be scared. But, your husband and I will both get through our trials. I had a partial glossectomy in Sept 2012 followed by radiation with Cituximab chemo. The treatment was no pleasure, but I got through it. It helped me mentally to just take each day as it came and not think too far ahead. I divided the 30 treatments up mentally into weekly milestones rather than counting them one by one. I could celebrate getting through each week.

I don't know about "regular" chemo side-effects since I did not have standard chemo. The worse side effects from the Cituximab was a face full of pimples which were controlled by antibiotics.

The radiation wrecked my sense of taste pretty quickly. I also developed dry mouth and plenty of mouth sores. I had been taking food by mouth by that time, so I forced myself to keep eating even though most things tasted awful. Cream of Wheat and scrambled eggs were two of the foods I could tolerate most, so I ate these all the time. The peg tube supplied about half my nutrition during my treatment. Again, this was with a partial glossectomy, but I would imagine radiation side effects would be much the same either way. If they clear your husband to take anything by mouth during the treatment, it is important that he do so even if it's unpleasant. As Tammy says, we don't want those muscles to forget how to work.

After the treatment ends, it takes much longer to recover than one would think. Be patient and think in terms of months, not days or weeks.

I am sorry your husband has to face this at such a young age (or any time!), but at the same time it's great that he's young and strong. I am 57. Not ancient, but it feels that way these days.

I will be eager to hear how your husband does with eating and swallowing. I used to think that was a big deal with the partial glossectomy, but my eating was really pretty normal until the recurrence. I am worried about what it will be like when I have the full glossectomy.

Best wishes to you and your husband!

Roger, hello. You will do ok with swallowing after the total Glossectomy.
Kris found it quite easy. He just tips his head back slightly to get everything to the back of the oral cavity, then just swallows. The SLT says she has no idea how he does this, but finds all Glossectomy patients find their own way. You will too.
We also were terrified at the prospect of this surgery. It really was a horrendous thought. All the thoughts on what would life be like. Would Kris be able to eat and or drink. What would his speech be like. Would his appearance be altered. What about neck function post the neck dissection. Would he be able to lift his arms up again after the dissection. There were so many questions and I know my imagination ran riot.
My advice? Just go with the flow. Everything sorts itself out in the long run. What you think may be huge problems turn out not to be. You end up worrying over nothing and it is not productive. Know that you will be ok and that there will be great living after this is over. Be patient and give yourself time. Practice, practice with both the swallowing and speech.
I will follow both Nina and her husbands journey and yours. Any help I can give, I will be here. Take care,
Tammy