Anyone had a subtotal glossectomy? Willing to talk?

Hello @beckyg76 and welcome to the Head and Neck cancer group.
How quickly cancer can turn life upside down. If you search Glossectomy in the magnifying glass search about you can find recent posts by @mnmike or @rubagaddal and others, which given time people most likely will pop in on this discussion.
To see your younger brother chopped up like that has to be heartbreaking. At least the road to cure and recovery is ahead, difficult as that too can be sometimes.
Dr. Robert Schuller famously said “Tough times never last, but tough people do!” Many of us find life will never be the same again but it is still life and most of us find that in itself very rewarding.
Which Mayo Clinic are you located?

Hello! @hrhwilliam we are currently at the Mayo in Phoenix. It has been a tough road already and pretty much everything that could go wrong has thus far. I'm praying things will improve. Watching my brother go through this life changing journey has been devastating but I'm by his side for anything we need to face. Thanks for reaching out

Hello @becky76,

Your little brother is in good hands. I was being treated, or rather, mistreated at the UofMN for two and half years for a sore on my tongue that they never bothered to biopsy until July of 2022. When they finally did it came back positive for cancer and scheduled me for a "quick" surgery to remove the lesion. When I woke up, the doctor said, "Sorry, I could not perform the surgery because I noticed a giant tumor in the base of your tongue." The doc never palpated the area before surgery, so he was, in his words, "blindsided" by its presence. Afterwords, he was unsure about how to proceed. Anyway, long story short, I went to Mayo in MN where I got a very decisive treatment plan: remove 70% of my tongue, double neck dissection, flap reconstruction with tissue from my right forearm, 6 weeks of radiation plus chemo. The care team was outstanding. No paperwork, no hassles. One of the things I like best about Mayo is that, unlike other clinics, you get the results from your follow-up scans immediately. They seem to understand that waiting a week for test results (like at the UofMN) is punishing.

I would be happy to talk to your brother any time. I blogged some of my experience here: bearandgator.com

I would encourage him to focus on his incredible good fortune of being treated at Mayo. That's what I did, instead of thinking about my suffering and losses. It really worked for me. I even came to enjoy going to Mayo, taking in the art and architecture, going to some of the restaurants there, seeing all the beauty in Rochester. If your brother is getting radiation there, I would recommend staying at the Hope Lodge (it's free) for the duration. In addition to the convenience of staying onsite, he'll benefit from the support of others going through the same thing. It was really enjoyable for me and became yet another blessing to focus on. For me, I seemed to have to choose between self-pity and despair or gratitude and optimism.

The good news for me is that, while I do have a bunch of chronic side effects from the treatment, I got most of my life back. I can still take part in my hobbies like sailing, cooking and building things, though I do them in a different way now. I accept my limitations and try to focus on the blessings that I still have. It's all part of the adventure. I have a PET scan coming up in a couple weeks, for example, and I am trying to prep for it by thinking how nice it will be to see my team again, take my wife to a restaurant while we're there, maybe do some Christmas shopping at Scheels--look at it as another little adventure. The alternative is to agonize over the possible results of the scan. I really believe we can control our thoughts if we try.

Anyway, God bless you and your brother. You are in my prayers.

@mnmike thank you for response. My little brother had reached out before surgery and you had replied to him so I thank you for that. Going into this journey, he prepared to have 50% of his tongue removed and lymph nodes on left side of neck with tissue from forearm for freeflap. After 11 hours of surgery, he came out with subtotal glossectomy, double neck dissection and tissue along with a vein and artey from his left thigh for freeflap. 30 minutes later he was back in OR for a hematoma in thigh. It has been agonizing to watch but we remain optimistic and positive. The doctors here have been amazing. He has a huge team working with him and we are all in this together. Thank you for your positive words of encouragement. I wish you continued success on your journey. God bless

Hi @beckyg76,
My best wishes for your little brother and the family,
Oh, yes, it is indeed very shocking and agonizing to have all this happens without preparing you for it!
But I, as a cancer survivor would like to assure you and your brother that cancer should be regarded as any other illness that could affect anyone, any age, anytime and anywhere. those who were killed or permanently crippled with car accidents are far more than those with cancer, given the advanced cancer treatment methods and interventions, one can successfully overcome the tough times that he endured during and after treatment. And sure enough, one can lead a very good fulfilling life if he just trained himself to accept the situation as it is, try to think that your are just lucky enough to have access to a good healthcare, and a caring loving family and/or friends.
Tomorrow is always better, I am very positive, your brother is young, and has all the future ahead.
This is not just words to make you feel easy; but also from my experience, believe me, I am till now have been the one who support my family members, they feel very bad for me, and I find that I should be the one who help them not to lose faith.
All be OK by ALLAH's will.
Keep the good hope

Hi @hrhwilliam
I hope you are well!
I think I read in some of your posts here that you suffered from some oral pockets as a complication, if that is the case, how do you deal with that?
Thank you so much.

Hi @rubagaddal. I deal with oral pockets by continuous oral care, oral tools, and rinses. I travel with a toothbrush and syringe for water or a water pick. Also have pockets in the throat so I have to watch what and how I eat, no dry foods without fluids.
Are you experiencing anything like this?

Thank so much @hrhwilliam.
Yes, I do struggle with a deep pocket that runs down the left side of my tongue.
I do try my best to remove any food residues, I use three types of toothbrushes, mouth washes of salt and sodium bicarbonate, and a cotton stick to reach deep down, but still couldn't remove very small deep particles.
What other oral tools can help?
Thank You for your help and advice.

There are a variety of rubber tipped picks available yet I’m not sure where I found these. Possibly a drug store.
A Water Pick is very handy as well once you get used to not spraying the room. I add a bit of Chlorhexidine Gluconate rinse (prescription available from doc or dentist) to the water tank to keep it fresh/clean.
Our daily oral work is time consuming. We have no choice in the matter. It’s part of the new normal because ignoring all that needs to be done has drastic results. Perhaps some day our surgeons will consider quality of work in the equation when making their repairs. Our part can be handled during follow-ups by factually stating without complaining that we have issues and what those issues are rather than just saying it’s all fine, no complaints. This while probably not directly helpful to us just may help the next patient down the road by improving procedures. One can only imagine what the first patient’s quality of life was like.

Hi @hrhwilliam,
Thank you so much for the valuable information.
It is quite time consuming all that mouth washes and rinses.
Unfortunately the surgeon who performed my operation is not open to any statements, he just regards what he did as an absolute perfection, no questions asked!!
That's why I turned to the open space out there and fortunately found you with all the help and guidance through the hardest time anyone can go through.
Thank you