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Tongue flap reconstruction, likely selective ND #200389
09-06-2020 05:25 PM
09-06-2020 05:25 PM
Joined: Apr 2015
Posts: 4
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landa Offline OP
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landa  Offline OP
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Joined: Apr 2015
Posts: 4
Hello all,
I'm writing on behalf of my husband, 47, who has stage 1-2 tongue SCC. Surgery scheduled Oct 1 at Huntsman in Salt Lake City.

CT of neck/soft tissue and chest show negative. The ND has been recommended because of risk for spread and, as I understand it, because the neck will be open for the flap reconstruction. Also, his cancer cells are poorly differentiated, or at least partly poorly (not well differentiated at least), so I guess slightly higher risk of spread.

It's all overwhelming, to say the least (nothing new on this forum, I understand)

Main concerns (above and beyond long term survival, which is of course a concern), are effects of ND. The surgeon has explained risks for possible shoulder function damage, which is my husbands greatest fear. His biggest joy in life, outside of his family, is mountain biking. I guess what we're looking for are peoples' stories of how the ND has affected their neck and shoulder. If damage occurs, how much can be rehabilitated?

The surgeon has said plan would be for removal of nodes levels 1-3. I have read that preservation of level 2b could possibly reduce risk of harm to shoulder function. Has anyone here done this?

The other (less recommended) option the surgeon offered was for him to do a sentinel node biopsy, instead of ND, and to follow the path of that SN. We understand there is possibly more long term risk with this procedure. But i've read lots of articles that say that in an N0 neck, that perhaps it is a viable option?

Also, in regards to the flap reconstruction... hair on the tongue? I couldn't believe it when my husband first mentioned this concern, but of course the surgeon verified that this is very possible. Anyone that can share their experience? It can be removed surgically if it happens? Is this effective?
I know this perhaps should be the least of our concerns, but let's face it, the psychological side of things can have a great affect on your prolonged life.

Happy to hear people's feedback, and words of encouragement.

Thanks to all. I know you've collectively been through so much. Your time and presence on this support page are so appreciated.

LB

PS my husband was first diagnosed in 2006. He has had two tongue surgeries, same day sugeries. This one coming up is of course is MUCH more involved
His cancer is HPV -
He is a never smoker, social drinker (but never heavy drinker)

Re: Tongue flap reconstruction, likely selective ND [Re: landa] #200393
09-07-2020 08:23 AM
09-07-2020 08:23 AM
Joined: Feb 2020
Posts: 38
Michigan, United States of Ame...
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DavidUofMsavedMe Online
Contributing Member (25+ posts)
DavidUofMsavedMe  Online
Contributing Member (25+ posts)
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Joined: Feb 2020
Posts: 38
Michigan, United States of Ame...
Overwhelming and scary times are ahead for you and your husband, no doubt. Especially if radiation and chemo are recommended after surgery. Many of us here have been through what you (caregiver) and your husband (patient) will be facing in the coming months of treatment and recovery. So ask away.

Your husband's overall health going into this will determine how well he will recover from this ordeal. Just know that life won't be the same again. Quality of life could possibly be a factor, but he is still young so hopefully he does well. There is hope, and that is what you both must cling onto.

Like your husband's scan, my CT scan prior to my hemiglossectomy (SCC) and neck dissection surgeries was also clear, but my ENT surgeon still recommended a neck dissection to remove some lymph nodes to be safe. Ten were removed. I am glad they did remove them because one node was cancerous and showing signs of leeching out. Which means in the few weeks between the scan and surgery my cancer had spread.

For me (43), the neck dissection has been the hardest part of this. My shoulder hurt like hell for weeks after surgery, but it improved with time. Physical therapy has helped tremendously with pain alleviation and getting mobility back. Working on building strength now.

I am approaching the 6 month mark since completing a grueling treatment of surgeries (hemiglossectomy & modified neck dissection), 33 doses of radiation, and 2 doses of chemotherapy. And I have regained my energy back in a big way. I walk 3 days a week with about 200 miles walked in 6 months. I ride my bike 3 days a week as well, and have about 700 miles ridden in 6 months! No shoulder pain. 😁 I also go disc golfing on weekends with my brother and recently bought a kayak. Staying active will help with recovery so life can be enjoyed again.

As for hair appearing on the tongue flap, it is a possibility. I've read about others experiencing it. I have not noticed hair appearing yet, but my flap was harvested from my lower forearm which is mostly hairless.

Your husband may be put on a feeding tube for awhile to allow his tongue to heal. How long is unclear. Everyone is different, so it could only be a month (as in my case) or it could be much longer. Maintaining his caloric intake will help with healing and recovering. Hydration is also vital. Speaking of...

Your husband should stop drinking alcohol going forward, as that could cause a recurrence of cancer. After what he will go through to beat head and neck cancer quitting should be a piece of cake. That is a choice he will have to make, and live with.

Good luck to you both.


The number of people involved in my care (@ a CCC) is humbling. Doctors, nurses, therapists, support staff, & of course, family. With everyone fighting for me to beat cancer the least I can do is fight back and win!
Re: Tongue flap reconstruction, likely selective ND [Re: landa] #200396
09-07-2020 09:14 AM
09-07-2020 09:14 AM
Joined: Jun 2019
Posts: 196
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Dizz_zzey Offline
"OCF across the pond"
Dizz_zzey  Offline
"OCF across the pond"
Senior Member (100+ posts)
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Joined: Jun 2019
Posts: 196
Hi landa,

Sorry to hear about what your husband and you are going through. It's a pretty rough time. I had 79 nodes removed in August 2019 at the same time as having my tongue removed (I have a 'sliver' left). I noticed around 2 weeks after my surgery that my right shoulder had dropped. I didn't get it seen to as I wanted to get through rads first before concentrating on fixing something else, so I didn't get seen by the physio until Jan 2020.

As the muscles were cut during surgery, the muscles stopped supporting my shoulder, which is why it dropped. I had quite a slant going on. I couldn't raise my arm to wash or brush my hair. I couldn't sleep on it at all. Lifting anything heavier than a coffee cup was a nightmare. Annoyingly it was the opposite arm to where the flap was taken, so it was a nightmare to get dressed and do things around the house.

However, physio helped really well. My shoulder is back in it's place and I've regained strength. I'm allowed to lift up to 1.5kg in the gym, which is great, and I can sleep soundly. So it's not bad at all. Get your husband to ask questions about post-surgery physio for his shoulder, so that they can formulate a plan and he get going, once he's been cleared to do so. I can also turn my neck well enough to drive safely. I have some think scar tissue that has built up causing a bit of an issue with tilting my head up (the skin feels tight) but I'm having regular massages by the physio and I've been shown what to do every day.

Keeping active is great, so maybe your husband can set up a dynamo to cycle indoors, for days when he wants to stretch his legs but hasn't the energy to cycle for too long. Keeping active throughout all of the treatments does help with healing, as does keeping up with calorie intake, lots of protein and plenty of water/hydration.


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
Re: Tongue flap reconstruction, likely selective ND [Re: landa] #200404
09-11-2020 02:29 PM
09-11-2020 02:29 PM
Joined: Aug 2020
Posts: 10
Huntington Beach, CA
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Nels Online
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Nels  Online
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Joined: Aug 2020
Posts: 10
Huntington Beach, CA
Hi Landa

I just went thru surgery for SCC on my tongue (removed 50% and rebuilt it with forearm skin) and lymph nodes (removed 18) on 4/1/20. I also went thru 30 days of radiation treatment completed on 7/8/20. I experienced both a hairy tongue (my arms are hairy) and a weak shoulder. Being young and active will help his recovery. For reference, I am 52 and a lifelong active person.

Regarding the hairy tongue, I was told by the doctors that radiation will kill all the hair. Since I believed them, I enjoyed the novelty of it, freaked out my kids, and took a few pics for posterity. The doctors were right. I have not had a single hair since radiation. I also heard, if you don't get radiation, you can have it removed by laser or other techniques.

I was much more worried about losing shoulder function. They said for some, it's permanent, and really hard to predict. My current outdoor passion is surfing. My right shoulder (side of surgery) was quite weak after surgery and I had limited range (barely lift my arm to shoulder high). Even in the hospital, I started doing simple exercises. I learned to judge improvement in weeks not days. It took about 5 weeks before I got back in the water. That first session out after surgery was my worst-best of my life. I got my butt kicked, barely caught a few waves, but it never felt so good. And, every week, I got a little stronger.

As of today, I can not tell the difference. It has been about 5 months. Praying for successful surgery, clear margins, and a full recovery for your husband. BTW, we lived in SLC for 12 years, mostly in Sandy. Skied, rock climbed and mountain biked all around the Wasatch.

Stay safe and keep the faith.

Nels


OCC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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