partial glossectomy with radial forearm free flap

MJG1

We got the call we had dreaded today.  After a squamous cell carcinoma tumor in the spring was removed and we thought all was well we have now have a reoccurance in the same part of the tongue.  Next week we will go to Siteman Cancer Center in St. Louis, MO for a soft tissue CT and a PET scan.  Soft tissue CT on JULY 8 of this year showed NO cancer.  What the what!?!?

There will be surgery, a week in the hospital, on a trach, feeding tube, and a new tongue built with the skin from my husband's forearm.  Just typing this makes me ill.  

We had the same ENT for head and neck cancer back in 2016 so we know the team and we're comfortable with them.

Just a guess, but maybe this cancer is caused by radation from previous treatment?

Anyway, I'm looking for special people to give any tips and helpful hints as to how I can make this easier for my husband.

Thank you ever so much,

Margi

LitlCJdoll

He can do it

Hi Margi,

I know I've been talking to you in Private messaging and you know parts of my story but I wanted to post a little here.

Its 3 am and I have a 7 am appt in Pre Op, but here I am...

If your husband is " healthy" and I know that's a relative term, in Cancer , then he will get through this.  I know some older men who did not Want to go through it, wanted to give up, but you know what ? They eventually recovered in weeks/ months and they were back to ( another ) forum, helping others and unbelievably grateful to be alive.

About the CT scans, no they do not always show everything. My case can attest to that. And #2. Its not likely that radiation caused the recurrence of SqCC. It just happens. With me, over and over and over 5 times plus a new primary post radiation...

Again, he will get through this. Its difficult.... He won't be able to speak at first,. This might be a blessing,  not sure !!  

I could not speak for months.  Not allowed to drive for 5 months.

I am going to Compare here, mine & his cases because it serves a purpose, hopefully to show you that many people come through this surgery and go on.

#1. In the 3 weeks leading up to my surgery I was admitted twice.  First time going into Shock from dehydration & malnutrition. Down to 64 pounds ... My body was consuming itself, this is no exaggeration, because the very large tumor blocked my swallowing . I got the G tube installed . because they could not put it in the conventional way by going down my throat, I got 5 incisions in my abdomen by laparoscopic surgery. For a darn G tube.

#2. Second admission was for pneumonia. Do you think my lungs were all cleared 3 weeks later for 7+ hours if surgery?? No. But they had no choice. My skin was by then grey/ blue, because the tumor was by then blocking my airway. So, a Tracheostomy saved me.

#3. I've not told you this part---- I was born with a very serious Primary ( genetic) Immunodeficiency. Diagnosed at 9 years old, finally, by a very astute Hem/ Onc Pediatrician . 1973.... So, I struggled my whole life with infections. We knew cancer was a big possibility but its usually Gastric or Lymphoma in these rare immune deficiencies . 

With cancer, I've had 5 pneumonia, and Sepsis twice.

I go into the hospital Every 28 days to receive Intravenous Immunoglobulin and I've done this now for over 30 years. It gives me only a very small part of my missing immune system

#4. Another strike against me was the tumor spread and very extensive surgery. Mine took over entire tongue, back to front tip, Tonsils, Salivary glands ( both of those cut out bilateral ,..It encroached upon my right & front Mandible, thus a Rim Mandibullectomy too. Bilateral neck dissection. 55 out on right, 25 out on left. Etc. Then the many subsequent surgeries. I had to have blood transfusions..

 

I didn't want to write all this but I'm making a Point and its this----- if a Very Sick person like me can survive that onslaught of surgery, and survive and fight and claw my way to living--- then its proof others can too.

I had a 5 man surgical team, but my primary surgeon did it all. He's internationally known for his skull base and Micro vascular surgery. People come to him from all over !! He's been my doctor since my days in Pediatrics, 28 years now. Why? Because initially he was just my ENT for chronic ear infections. Now he's my Oncology head & neck surgeon. Its sad for both of us... He has openly cried a lot, over my plight. But we are tight and we love each other. 29 years this November. My doctor.

They told me that one thing that got me through is that I'm " feisty".  I guess I have a strong personality and will to live.

Maybe I got through it so that later I was there to help my Randal get through his last years, months and days.  

Margi, your husband has you by his side. You are a very smart lady, and you want whats best for him.  Yeah, its going to be difficult to go through but if someone like me with so many strikes against me can come out on the other side ( only for the stupid cancer to keep coming back 5 more times !!! Terrible ..)--- then I have faith he can do it too. 

His amazing medical team will assure that.

Okay, I have written too much but trying to make a point.. 

We are right here with you, and Know these trials feel insurmountable .  You have to take it a step at a time and ask questions and please do as the doctors advise every step of the way. If they are like my surgeons, they do these surgeries a lot. Its why people travel far, to get here. I live just 3 miles away!! Heading over there soon. Gotta go.

Crystal 

wbcgaruss

Dear Margi & Husband

(Husband's Name?) Hate to keep referring to him as husband.
This is certainly not what we were Praying and hoping for.
Sorry to hear it means another procedure or more and recovery.
None of this is easy but it can be done for sure.
I can't help you personally but I know there are folks on here that have had this done and they get through it and live life.
I can however give you hope with this article about a beautiful young lady who probably went through the same thing your husband is
going through in Oct. of 2016. Her name is Jeannie Hopper and she was treated at MD Anderson Cancer Center.
Here is a link to the article published April 2019  https://www.mdanderson.org/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

Here is a link to her blog  https://www.mdanderson.org/cancerwise.dir.html/author/Jeannie%20Hopper

This is a very inspiring success story.
Wishing You The Best-Take Care-God Bless-Russ

MJG1

wbcgaruss said:

Dear Margi & Husband

(Husband's Name?) Hate to keep referring to him as husband.
This is certainly not what we were Praying and hoping for.
Sorry to hear it means another procedure or more and recovery.
None of this is easy but it can be done for sure.
I can't help you personally but I know there are folks on here that have had this done and they get through it and live life.
I can however give you hope with this article about a beautiful young lady who probably went through the same thing your husband is
going through in Oct. of 2016. Her name is Jeannie Hopper and she was treated at MD Anderson Cancer Center.
Here is a link to the article published April 2019  https://www.mdanderson.org/cancerwise/squamous-cell-carcinoma-oral-cancer-survivor-half-of-my-tongue-is-gone--but-i-couldn-t-be-happier.h00-159302256.html

Here is a link to her blog  https://www.mdanderson.org/cancerwise.dir.html/author/Jeannie%20Hopper

This is a very inspiring success story.
Wishing You The Best-Take Care-God Bless-Russ

Wbcgaruss thank you

His name is Dennis.   I've read and this great success.  It gives great hope with a few concerns.  I know she had chemo and radiation as well and Dennis will not be able to have any radiation. There may be other options, but we still have to hear from the ENTs and what they have planned.  Since Dennis had max rads of his head and neck in 2016 there is also some concern about healing based on past rad damage.  So many unknowns and that is one of the worst parts about cancer.  Thank you for taking the time, Russ. 

 

MJG1

LitlCJdoll said:

He can do it

Hi Margi,

I know I've been talking to you in Private messaging and you know parts of my story but I wanted to post a little here.

Its 3 am and I have a 7 am appt in Pre Op, but here I am...

If your husband is " healthy" and I know that's a relative term, in Cancer , then he will get through this.  I know some older men who did not Want to go through it, wanted to give up, but you know what ? They eventually recovered in weeks/ months and they were back to ( another ) forum, helping others and unbelievably grateful to be alive.

About the CT scans, no they do not always show everything. My case can attest to that. And #2. Its not likely that radiation caused the recurrence of SqCC. It just happens. With me, over and over and over 5 times plus a new primary post radiation...

Again, he will get through this. Its difficult.... He won't be able to speak at first,. This might be a blessing,  not sure !!  

I could not speak for months.  Not allowed to drive for 5 months.

I am going to Compare here, mine & his cases because it serves a purpose, hopefully to show you that many people come through this surgery and go on.

#1. In the 3 weeks leading up to my surgery I was admitted twice.  First time going into Shock from dehydration & malnutrition. Down to 64 pounds ... My body was consuming itself, this is no exaggeration, because the very large tumor blocked my swallowing . I got the G tube installed . because they could not put it in the conventional way by going down my throat, I got 5 incisions in my abdomen by laparoscopic surgery. For a darn G tube.

#2. Second admission was for pneumonia. Do you think my lungs were all cleared 3 weeks later for 7+ hours if surgery?? No. But they had no choice. My skin was by then grey/ blue, because the tumor was by then blocking my airway. So, a Tracheostomy saved me.

#3. I've not told you this part---- I was born with a very serious Primary ( genetic) Immunodeficiency. Diagnosed at 9 years old, finally, by a very astute Hem/ Onc Pediatrician . 1973.... So, I struggled my whole life with infections. We knew cancer was a big possibility but its usually Gastric or Lymphoma in these rare immune deficiencies . 

With cancer, I've had 5 pneumonia, and Sepsis twice.

I go into the hospital Every 28 days to receive Intravenous Immunoglobulin and I've done this now for over 30 years. It gives me only a very small part of my missing immune system

#4. Another strike against me was the tumor spread and very extensive surgery. Mine took over entire tongue, back to front tip, Tonsils, Salivary glands ( both of those cut out bilateral ,..It encroached upon my right & front Mandible, thus a Rim Mandibullectomy too. Bilateral neck dissection. 55 out on right, 25 out on left. Etc. Then the many subsequent surgeries. I had to have blood transfusions..

 

I didn't want to write all this but I'm making a Point and its this----- if a Very Sick person like me can survive that onslaught of surgery, and survive and fight and claw my way to living--- then its proof others can too.

I had a 5 man surgical team, but my primary surgeon did it all. He's internationally known for his skull base and Micro vascular surgery. People come to him from all over !! He's been my doctor since my days in Pediatrics, 28 years now. Why? Because initially he was just my ENT for chronic ear infections. Now he's my Oncology head & neck surgeon. Its sad for both of us... He has openly cried a lot, over my plight. But we are tight and we love each other. 29 years this November. My doctor.

They told me that one thing that got me through is that I'm " feisty".  I guess I have a strong personality and will to live.

Maybe I got through it so that later I was there to help my Randal get through his last years, months and days.  

Margi, your husband has you by his side. You are a very smart lady, and you want whats best for him.  Yeah, its going to be difficult to go through but if someone like me with so many strikes against me can come out on the other side ( only for the stupid cancer to keep coming back 5 more times !!! Terrible ..)--- then I have faith he can do it too. 

His amazing medical team will assure that.

Okay, I have written too much but trying to make a point.. 

We are right here with you, and Know these trials feel insurmountable .  You have to take it a step at a time and ask questions and please do as the doctors advise every step of the way. If they are like my surgeons, they do these surgeries a lot. Its why people travel far, to get here. I live just 3 miles away!! Heading over there soon. Gotta go.

Crystal 

Crystal - thank you

thanks for putting things in perspective. 

LitlCJdoll

MJG1 said:

Crystal - thank you

thanks for putting things in perspective. 

Updates, please!!

Hi Margi,

 

Please keep giving us the updates. Step by step as the process goes forward. Everyone on the forum  here is so wonderful with giving help all along the way. Please let us know all that going on. 

Thinking about your husband ( and you !) And sending best wishes everyday throughout treatment and beyond.  

Tell us how things go---- don't leave us hanging !!

Crystal