Tongue Flap complications

LitlCJdoll

Hello fellow HNSCC patients/ surviv

Its been a long time since I have posted... This month, I am 4 years out from my diagnosis, G Tube, etc. I am 71.5 pounds...and my tumors have been Recurrent, even after Radiation treatments.  My esophagus is severely strictured--- Twice it closed up completely... For 2 year now, I have it dilated every 2 - 6 weeks.  The widest my doctor can get it is 7 Millimeters .  Its treacherous..

I have Pre-Malignant conditions in 2 places we know of right now---  a mass beside my right vocal cord which persists in Moderate Dysplasia, despite Laser surgery. It came back even larger.  And now my Palate....   

6 Invasive SqCC tumors thus far , = Tongue ( actual tumor size 6.3 Centimeters ), which invaded tonsils, salivary glands... Recurrent Base of Tongue, Floor of mouth, which invaded the Tongue Flap,...bottom lip very deeply invasive, positive margins, ... Multiple surgeries..

My question today is about my Tongue Flap.  It is DISAPPEARING. It is literally going away. It is Gone, more than 2/3 of it ... It has disappeared into the Floor of my mouth, creating a huge Hole.

I am at Wake Forest University Comprehensive Cancer Center / school of Medicine and my surgeon had s esteemed, known internationally.  He has been my doctor 28 years.....  He looked at the situation last month and he told me " Yes, they sometime do disappear." He said he has seen it happen in other patients.  But I've no idea what the next step is, if any.

Meanwhile, its compromising my swallowing further and my speech.  I am allowed only Sips of liquid anyway because I " aspirate with every swallow" , as per all my swallow studies, which have become progressively Worse.  I have had 5 aspiration/ bacterial pneumonia, 2 with Sepsis.  

Anyway, I wanted to know if anyone else has had the experience of their Tongue Flap Disappearing !!

I do believe that one reason for it  are the 2 " extensive" surgeries done for the aggressive tumor that invaded it from my floor of mouth.  This tumor came up less than a year after my radiation treatments.

Look forward to hearing from anyone .  This road is quite lonely and isolating. Its very difficult to find people who understand this particular cancer, you know.

Crystal 

 

wbcgaruss

LitlCJdoll What An Interesting

CSN Handle to know you by. I always thought it was unique and you probably are also. I don't share your situation or have any ideas or suggestions I just want to let you know I remember you well and we have even chatted over private messaging. It seems you have very good doctors and are getting good care still in your situation cancer keeps darkening your door. Why, well no one knows why some are treated and are good the rest of their life and then there are a number of us where cancer, unwelcome as it is, visits again. I have had three bouts with cancer myself so I can somewhat share your feelings although you deal with so much more. You are a very courageous person. I am amazed at what you deal with and yet keep a positive attitude. You are an inspiration to us all. You have been on my prayer list for a while now and I am sending best wishes and hopes for improvements and better days ahead-Take Care-God Bless-Russ

FOMC

Tongue Flap

LitlCJdoll, 

I had my tongue flap surgery at Wake Forest Baptist Health back in 2018 and Dr Patwa was my Otolaryngologist.  As of this writing I have not had any type of recurrence and pray that it stays that way.  Other than drinking an exorbitant amount of water these last 3 years and keeping my mouth extremely clean with daily brushing, fluoride trays nightly. and flossing what's left of my teeth, I haven't done anything out of the ordinary.  

 I don't smoke anything or drink any alcohol now (these always triggered one another so, I decided to quit them altogether) so, I'm guessing that has helped the durability of my flap so far.

I'm slightly confused as to what you said about 2 extensive surgeries for the tumor?  Did you have a recurrence in the vicinity of the first tumor? and if so, did they have to cut out/through the initial flap to remove it?

I will keep you in my thoughts and prayers

Jerry

LitlCJdoll

Follow up answer

Dear Jerry,

I do not remember if I  answered these questions by our private messaging, or not but I wanted to clarify, because you too have a reconstructed tongue flap and this is illustrative of what can happen.

When I had the 7-8 hour surgery April 2017,  ( its listed in my profile. Massive surgery and I weighed 64 pounds on surgery day. My large tumor was literally killing me. No one knew if would survive... But here I am, my feisty self)

He could Not get a clear margin in the back. Posterior margin was Less than 1 Millimeter. ( this was subtotal Glossectomy, Tonsillectonmy , Rim Mandibullectomy , Bilateral Neck dissect 55 out on right and 25 out on left,  cut out Bilateral submandibular Salivary glands ( tumor invaded both), teeth extracted ( when jaw bone is cut down, teeth go with it!)  Micro vascular reconstruction using parascapular back piece ( 16" incision) Tracheostomy, of course.

Okay, my R O told me, as I already knew, " Crystal , less than 1 Millimeter margin  is not a clear margin !". It's a " grey" area...

He had to hit me hard with the IMRT ( VMAT.). Oh, I also had Perineural Invasion.  Bring on the radiotherapy please!!

Well, my recovery was fraught with complications like being readmitted multiple times with Pneumonia and Sepsis. Gee... I finally made it up to 67 pounds.

Well, 5 months later my first Recurrences were found. 3 in one surgery. Another mouth full of sutures ( I cry thinking about the Pain).  Then 1 1/2 month later, even worse ones that extended to my Supraglottic larynx.

It was then that my surgeon posted in his Clinic Notes the statement that " She has disease which is not curable." .

One night I  asked him on e mail, if SqCC could invade my tongue flap?? I thought no, because it was from my Back...( my hopeful thinking?)

He said Oh yes, it can surely invade the Flap.

 

Jerry, in 2018 ( a year later), it did just that. It was a Floor of mouth tumor. It grew deep ( he cut me 2 centimeters down), and then it grew upward and into the flap.  This one was so aggressive that it required 2 surgeries. After the first surgery, we could See where it was already growing back, within 1 1/2 weeks!!  Very fast and it ulcerated too. Like another one previous did.

So.... Yes, these flaps can be invaded. Heck, anything that's in the way will be invaded .  It was completely wild though, seeing how Fast it grew back! That we could see the actual growth.  The 2 surgeries were April 11 and May 14 ...and I had another bacterial pneumonia afterward, #5.

.  Jerry, I BEGGED  my R O for more Radiation, after those surgeries. I said Please, just targeted to that area , to mop up..??  His response was " Hell no.  It will rupture your Carotid artery and you'll have a bleed out. No way, Crystal.

I wanted more, because I SAW how fast that SqCC tumor grew..

 

Do the mouth exams, Jerry. Please keep close watch.

 

Crystal