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Joined: Jan 2021
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Joined: Jan 2021
Posts: 3
Hello,
My 37 year old husband was diagnosed with stage 4 SCC on January 4th. He had none of the risk factors. He bit his tongue and it just refused to heal after months of his family Dr as well as urgent care Drs a biopsy was ordered.
We have been lucky that University of Iowa otolaryngology had an opening available so soon. The surgery couldn’t happen soon enough. In the last week he hasn’t been able to control the nerve pain and has barely been able to eat or even drink.
He is having a tracheotomy, a subtotal glossectomy (maybe total depends on the tumor spreading in the last week), a mandiblectomy, all of the lymphnodes in his neck removed, a free flap graft from his thigh.
As if that wasn’t daunting and terrifying enough, with all the COVID restrictions, his family and I can’t even be at the hospital for his surgery. We are supposed to receive text message updates as his surgery progresses. Then once he in in his room after going through recovery, 1 person can see him for an hour. Then everyday he is in the hospital, 1 person per day can see him for 2 hours, and the time can not be split between multiple people.
He is really close with his family. He is concerned that with him not being able to communicating well verbally that he will have to rely on his text to talk on his phone which will make FaceTime or phone calls very difficult. Does anyone have any suggestions?

Joined: Feb 2015
Posts: 103
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Joined: Feb 2015
Posts: 103
I can't offer much but does he like to read? If so I found a book about President Grover Cleveland and his oral cancer to be very interesting. If the family reads it you'll have something to talk about that isn't just about your husband's operation.

Anybody who has been hit with Oral cancer who likes to read will probably find this book about President Grover Cleveland as interesting as I did.


“The President Is a Sick Man,” by Matthew Algeo


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
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Posts: 330
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Posts: 330
my husband had SCC 4 and then a new occurrence nearby this last year. He was being seen at University of Iowa but they said it was inoperable. He went to Mayo clinic a few days later and they offered proton therapy. Just saying there are option out there and if you feel things are progressing, do not be afraid to get a second opinion from Mayo. It can't be that far away if you are currently going to University of iow.

He's 7 months out from treatment now and has gotten clean scans twice.

Best wishes.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Nov 2020
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Posts: 14
Hi Roberts, how did your husband's surgery go? I hope he is doing well, and I hope you are coping and doing OK also.

I had a similar surgery in Dec, minus the mandibulectomy, and was allowed no visitors. I was admitted for 8 days - I spent a lot of time on my phone texting. Between updating all the various friends and family, it ate up a lot of time! I also had my ipad so I watched netflix as well. And slept when I could! I hope your husband is coping, at least he can look forward to those in person visits each day.

Please don't hesitate to reach out if you have any questions! I will be thinking of you both and am happy to help out if I can.

Take care, Martha

Joined: Jun 2019
Posts: 229
"OCF across the pond"
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"OCF across the pond"
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Joined: Jun 2019
Posts: 229
Hi Roberts,

I had stage 4 SCC in my tongue in May 2019. I had surgery in August 2019 to remove my entire tongue. I was told that I would never eat or speak again, without a feeding tube and a tracheostomy.

18 months on I eat most foods and my speech is pretty good. I can hold telephone calls, I can do zoom calls and I am confident face to face with strangers.

Your husband being young - whilst it isn't a nice thing to go through at any age - actually goes for him to aid his recovery and rehabilitation.

He must do the swallow and tongue exercises several times a day before surgery to strengthen all of the muscles around the mouth and throat. This will help when the surgeons cut out the cancer. Then as soon as he can, try saying the alphabet saying the letters by name and phonetically. I would do this twice a day and say the name of everything I could see. My nurses thought I was mad, but it's really help. An effortful swallow is also great physio.

Waking up with the trach is terrifying, but once he's over the initial shock he should be OK.

Texting family and friends was key for my stay in hospital, although I didn't have the energy or concentration to do that until day 3.


Happy to chat about anything for you. I'm in the UK so things might be a bit different, but experiences can still be shared.


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile

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