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Tongue Cancer Recurrence - Reconstructive Flap #198892
08-19-2019 05:13 AM
08-19-2019 05:13 AM
Joined: Jul 2016
Posts: 6
Illinois
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AAnaya52 Offline OP
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AAnaya52  Offline OP
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Joined: Jul 2016
Posts: 6
Illinois
It has been suggested by my Surgeon that she use a reconstructve flap once she gets clean margins. My history shows new cancerous lesions popping up about every 6 months and I go in for surgery. Currently, my speech has changed due to 70% of tongue cut out, and due to inability to swallow properly I take all nutrition through my G tube. My question is to those of you who have had the reconstructive flap, how has it helped you? Specifically, has it allowed you to eat normally? Or, is it just for speech purposes? I haven’t asked my Dr. these questions yet because we are still waiting for the clean margins after surgery.

Thank you for your input.


Multifocal invasive SCC First Diagnosis 11/29/2010 - SCC in situ on left side of tongue - partial glossectomy + lymph node removal left side
Recurrence 2012 wide excision then chemotherapy and radiation
Recurrence 2015, 4 re-excisions 2016
2017 partial glossectomy Trial for Keytruda infusion - new lesion partial gloss
partial gloss 2x 2018 hospitalized malnutrition now g-tube feeding only
partial gloss 2x 2019 Dr working goal reconstructive flap but need clean margins
Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: AAnaya52] #198901
08-19-2019 08:44 PM
08-19-2019 08:44 PM
Joined: Mar 2019
Posts: 77
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Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
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Joined: Mar 2019
Posts: 77
Hello Anaya,

I had Microvascular reconstruction, with my free flap harvested from my scapula area ( back muscle/ tissue/ blood supply, under left shoulder blade. A long 16+ inch incision! )

My question for you is #1. Are you at a large comprehensive cancer center, under a surgeon who knows head & neck cancer, and is very experienced in Microvascular reconstructive surgery?
And #2. Why the long delay??

My cancer has relapsed / come back 5 times, with my latest new primary, this April / May.

Sadly, my tongue flap has never been Functional. It is immobile..
And truthfully, I'm not sure if my Primary tumor is to blame, or just nerve destruction from surgery.
Before surgery, that huge tumor had already pretty much immobilized the tongue ( I could not extend it, lick my lips, ....And could not swallow well

That was April 25, 2017. .....by October that year, my surgeon decided to go back in and try to reconnect the nerve pathways, cut the frenulum, and see if he could get some mobility.
But in the process, he found more cancer....
Etc. And it has remained immobile. I just have to live with it.

I've had so many surgeries since then for more recurrences, and my flap is still non functional. Actually worse than that-- it is now sutured down flat, to cover the holes cut from it this May, to removed the new Ulcerated tumor with deep + margins.

Having a tongue flap will serve you well, though, because it does Protect your airway, to a degree, and it will assist you in speech. And if it is Mobile, it might allow you to take in orally .

My case is complicated, though and my cancer Modified Barium Swallow, August 1st, just showed that my Aspiration problem has become dramatically Worse ( one year after my Radiation treatments). I am now aspirating Everything-- thin liquid, thickened liquid, and also puree. All of it is penetrating deep through my vocal cords, then I have " early spillover". ( no control of the swallow) ,then directly aspirating into trachea and lungs. I've had 5 instances of aspiration PNA. .

After the swallow study, I had an esophAgEal dilation-- that was #7 or 8, since December.
Mine is severely obstructed, from radiation damage. It won't remain open, so the surgeon has to repeat it every 5-6 weeks.

You can ask questions about the surgery... I'm sure there are others here who have a functional Flap.
In my case, I think there was just too much damage to begin with from my huge primary tumor..
My glossectomy was Subtotal,. I have maybe 1/4- 1/5 of my natural tongue left.
On a Taste scale, my Radiation Oncologist puts me at 0% out of 100%. The back muscle has no taste buds !


C


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: Crystal J] #198906
08-21-2019 05:20 AM
08-21-2019 05:20 AM
Joined: Jul 2016
Posts: 6
Illinois
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AAnaya52 Offline OP
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AAnaya52  Offline OP
Member
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Joined: Jul 2016
Posts: 6
Illinois
Hello and thank you for replying. Yes, I am at a Cancer Center of Excellence. My surgeon is one of the top surgeons in the field of Head and Neck Cancers. The reason to wait is a flap covers up more cancer. Considering my case of recurrence and the difficulty getting clean margins my surgeon and the team have decided because I am the one that first identifies the lesions - some are dysplasia - it would inhibit my ability to find the lesions early. Of course, we all know that finding them early is our best chance. I am really more interested in having the flap for eating purposes.


Multifocal invasive SCC First Diagnosis 11/29/2010 - SCC in situ on left side of tongue - partial glossectomy + lymph node removal left side
Recurrence 2012 wide excision then chemotherapy and radiation
Recurrence 2015, 4 re-excisions 2016
2017 partial glossectomy Trial for Keytruda infusion - new lesion partial gloss
partial gloss 2x 2018 hospitalized malnutrition now g-tube feeding only
partial gloss 2x 2019 Dr working goal reconstructive flap but need clean margins
Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: AAnaya52] #198940
08-26-2019 09:19 PM
08-26-2019 09:19 PM
Joined: Mar 2019
Posts: 77
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Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
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Joined: Mar 2019
Posts: 77
Hi again!

Are you able to / or is it safe for you to swallow liquids?

I too am 100% dependent on tube feeding.

It's just crazy enough to make me say To h with this!!

And I wanted to ask if you are aspirating? When was your last swallow study to view your swallow?

Let me know how you are doing.

Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: Crystal J] #198955
08-28-2019 09:19 AM
08-28-2019 09:19 AM
Joined: Jul 2016
Posts: 6
Illinois
A
AAnaya52 Offline OP
Member
AAnaya52  Offline OP
Member
A

Joined: Jul 2016
Posts: 6
Illinois
Hi Crystal!
My last Barium Swallow test was March 2018. I am only supposed to swallow 1 tsp. Because of pain and now aspiration I am on tube feeding for nutrition. I have a follow up on September 3rd to discuss next steps, if any. I’ll let you know how that appointment goes.
Thanks and take care!


Multifocal invasive SCC First Diagnosis 11/29/2010 - SCC in situ on left side of tongue - partial glossectomy + lymph node removal left side
Recurrence 2012 wide excision then chemotherapy and radiation
Recurrence 2015, 4 re-excisions 2016
2017 partial glossectomy Trial for Keytruda infusion - new lesion partial gloss
partial gloss 2x 2018 hospitalized malnutrition now g-tube feeding only
partial gloss 2x 2019 Dr working goal reconstructive flap but need clean margins
Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: AAnaya52] #198959
08-28-2019 03:04 PM
08-28-2019 03:04 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
AAnaya52,

Sad that you are in same place as I am, with regards to oral intake, aspiration, etc.


Back later, Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: AAnaya52] #198962
08-29-2019 03:10 PM
08-29-2019 03:10 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hi Ann,

Thank you for your kind thoughts!

Ann, when is your next surgery-- to go back in and get Clear margins ...? Surely they have a plan for soon?

What a mess, this cancer causes Ann!

Oh well...we just take it day by day, don't we.
or Hour by hour sometimes.

Please let me know what their plans are for your potential Free Flap surgery !

Crystal




4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization

Re: Tongue Cancer Recurrence - Reconstructive Flap [Re: AAnaya52] #199096
09-19-2019 02:39 PM
09-19-2019 02:39 PM
Joined: Sep 2019
Posts: 2
A
Annie H Offline
Member
Annie H  Offline
Member
A

Joined: Sep 2019
Posts: 2
Hi,
I had a hemiglossectomy Oct of 2006 with a flap. When I was still recovering, the cancer was found again and I had chemo and radiation. I was declared cancer free in April 2007. the flap allowed me to speak, but not the same as before, I had a little slur. The radiation had shrunk the flap a little bit. I could eat small amounts of soft foods.
In August of 2018 the other side of my tongue was removed. I have about 10% of my natural tongue, the tip and the very edge down the side. This allows me to speak, with effort. A little garbled and some words I will never be able to pronounce. But there are many other words to use to communicate your thoughts. I can swallow liquids with some effort, but I CAN do it. However it's not enough to sustain life. Funny I was worried about speaking but I thought for sure I'd be able to eat the same as before. It has been an adjustment. I'm getting the peg tube put back, I'll have it forever now.
Everyone is different. Two people with the same cancer but because of even small variables no outcomes are the same.
When I was 19 I was hit by a drunk driver. I was a pedestrian, walking in a parking lot and was smashed into a parked car. It took 2 years to heal. I've been handicapped since then. I learned then that you make a life with what you have. It became my new normal. So then comes cancer. now this is the new normal.
Yes it's possible to speak and eat with a flap.I was able to do both the first time. There are different degrees and definitions of success. This time around I can't eat or swallow to get enough nutrition to maintain a healthy weight. But I can speak, a bit garbled and a challenge to some. But anyone who wants to listen to me can understand. This is my new normal. Anything is possible.
If you have a question, ask it. Ask every question you have. Don't stop asking questions. Answers, information and knowledge only make you more wise.
I hope this helps you.
Annie


10/26/2006. T2 N0 M0 SCC of the left lateral tongue, hemiglossectomy, with left neck dissection, and reconstruction with a radial forearm free tissue transfer
3/2007. persistence SCC along drain tract requiring chemoradiation.
8/21/2018. Keratinizing SCC Histologic Grade: Moderately differentiated (G2)
Subtotal glossectomy, with right neck dissection, and reconstruction with a radial forearm free tissue transfer

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