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Squamous Carcinoma -- in jaw bone (Left posterior -- mandibular segment)

smdoherty
Posts: 9
Joined: Jun 2013

I'm new here, so happy to have this outlet and place for information! My almost 70-year old father has just been disgnosed with the above subject cancer. We met with his Specialist in Austin, TX (Dr. Scholl) last week and was told her will have 1/2 of his jaw removed and replaced with his fibula leg bone; with follow-up radiation. He is in the process of getting all of the necessary clearance from his cardiologist, dentist, etc. and has a PET, MRI and CT scan ordered for next Friday. Lots of questions, obviously. We are going to seek out a diagnosis/treatment plan here in Austin, and will then go to MD Anderson for a 2nd opinion. What we are wondering now is should we nix going through Austin all together and head straight to MDA. We won't know anything until the scans come back (if it's spread, what stage it is etc.) so do we go ahead and get all of the scans here, or should we get them at MDA? Is there a difference where you get your scans? THANK YOU for any help you can provide.

TracyLynn72's picture
TracyLynn72
Posts: 724
Joined: May 2013

in two different places and they just transferred them from the first place (which was a joke) to the second place.  The second place wanted all of their own scans done, so I did them again. I had mucoepidermoid carcinoma in my lower L jaw and had 1/4 of my jaw bone removed.  The tumor was IN the bone and they removed the entire lower L side including the hinge.  Mine was replaced with a metal plate and they took tissue from my neck to wrap the plate.  It looks just like normal gums :)

 

I wish your father the very best!  I'm in radiation treatments now, 2 weeks left to go!!  I hope the scan results are good and that it's contained to the one area! 

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I just left MDA Friday Morning and the Dr.s PA called me Friday eve. at 6:30 to say they want me to have a Needle Biopsy . I ask if I could have it done in my home town and she said " I wouldn't advise it ". I too just went there for a second opinon . I will be going back to have the Biopsy in a week or two. We have a long 6 hour drive but it sounds like if I want to get it ( their opinon) I will have to go back and I do ! Btw they did blood work and a CT scan while I was there. Best of luck to your dad .

Peggy

 

smdoherty
Posts: 9
Joined: Jun 2013

Thank you for taking the time to reply.  Best of luck with your biopsy!!

smdoherty
Posts: 9
Joined: Jun 2013

THANK YOU so much for taking the time to reply.  I know each case is idividual specific, as well as treatment.  All of this info. is so helpful and englightening.  Thank you for taking the time to reply.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

So glad you found us ! Believe me this is the best place for you to be. The people on here are so knowledgable and helpful . I didn't find it until I finished my Radiation tx and it would have been so much better for me if I had . I got so scared after two weeks when I was not feeling any better ! My doctor did not tell me how bad the side effects could be or give me any idea how long they might last ! The people on here were so helpful and encouraging . Wecome to this Board and feel free to ask any questions and someone will reply.

Peggy

hwt's picture
hwt
Posts: 1961
Joined: Jun 2012

I had same dx. Jan 2012, I am a 62 year old female.  I have been cancer free for a year now. It has not been an easy journey but doable. My surgery was 19 hours, 4 days in coma  then ICU  close to 2 weeks. That was all known upfront. Harder on family than myself as I really only recall the last 2 days.  They were able to keep my hinge and my jaw was replaced with fibula and titanium. Hindsight is 20/20 so I want you to know how exercises can possibly help your Dad open his mouth as wide as he can now.  I did not know about the exercises and can no longer eat a sandwich as I used to. Now have to have a knife and fork. Unfortunately, I had positive lymph nodes in my neck that required chemo and rads...that was hardest on me. Leg healed fine but that was a very long process. My sister had to dress it daily because it was difficult to do on my own. Went from walker to cane and now no issues with my leg at all. I would do a little research as I  heard Mayo in Rochester was now doing a procedure that did not involve the fibula.

Please feel free to message me if you have any questions. Prayers for your Dad.

Candi in STL 

smdoherty
Posts: 9
Joined: Jun 2013

Invaluable information, thank you.

smdoherty
Posts: 9
Joined: Jun 2013

Can't find info on the internet that details exercises for the jaw, pre-surgery.  do you have a link to share by chance?

ET@cowboy
Posts: 15
Joined: May 2013

Since you are from Texas look into Baylor in Dallas. There is an ENT Lance Oxford who is really great. Not knockin MD Anderson but look into Baylor.

smdoherty
Posts: 9
Joined: Jun 2013

Never thought about that, thank you.

Mrs. Sarge
Posts: 199
Joined: Apr 2012

I second the recommendation of Dr. Lance Oxford.  Don't know if he does that intensive surgery but he is great!!!!  It wouldn't hurt to go there for a 2nd or 3rd opinion.  Knowledge is always helpful and with your DX I'd want all the info I could get from the best in their field.  Of course MD Anderson is world renowned so not discounting them at all. 

The best to you!!

traceyd1
Posts: 30
Joined: Nov 2012

My husband had cancer in his lower jaw last year.  He had a sarcoma, so his radiation was before his surgery.  He did not require chemo.  The surgery was 18 hours, he then had failure of blood flow to the new bone two days later, so he had another surgery to remove the fibula.  That surgery was about 8 hours.  He then had his other fibula used to replace the fibula that failed.  The doctors think that his first flap failure was due to damage from the radiation.  He has had no real complications since.  He had a trach  for two weeks and a feeding tube for about three months.  The radiation was extemely painful and caused him to lose his taste and saliva.  It is extremely important to do the jaw exercises, as radiation damage is forever and continues to damage over time.  Please feel free to message me with any questions.  He is cancer free now and has been back to work full time since May of 2012.  Good luck to you.

smdoherty
Posts: 9
Joined: Jun 2013

THANK YOU!!  Have heard about the jaw exercises.  Any resources for how to deal with/overcome/treat saliva loss?  Congratulations to the cancer free life!!!  Love hearing those stories.  Thank you for your time so much.

traceyd1
Posts: 30
Joined: Nov 2012

My husband had cancer in his lower jaw last year.  He had a sarcoma, so his radiation was before his surgery.  He did not require chemo.  The surgery was 18 hours, he then had failure of blood flow to the new bone two days later, so he had another surgery to remove the fibula.  That surgery was about 8 hours.  He then had his other fibula used to replace the fibula that failed.  The doctors think that his first flap failure was due to damage from the radiation.  He has had no real complications since.  He had a trach  for two weeks and a feeding tube for about three months.  The radiation was extemely painful and caused him to lose his taste and saliva.  It is extremely important to do the jaw exercises, as radiation damage is forever and continues to damage over time.  Please feel free to message me with any questions.  He is cancer free now and has been back to work full time since May of 2012.  Good luck to you.

traceyd1
Posts: 30
Joined: Nov 2012

My husband had cancer in his lower jaw last year.  He had a sarcoma, so his radiation was before his surgery.  He did not require chemo.  The surgery was 18 hours, he then had failure of blood flow to the new bone two days later, so he had another surgery to remove the fibula.  That surgery was about 8 hours.  He then had his other fibula used to replace the fibula that failed.  The doctors think that his first flap failure was due to damage from the radiation.  He has had no real complications since.  He had a trach  for two weeks and a feeding tube for about three months.  The radiation was extemely painful and caused him to lose his taste and saliva.  It is extremely important to do the jaw exercises, as radiation damage is forever and continues to damage over time.  Please feel free to message me with any questions.  He is cancer free now and has been back to work full time since May of 2012.  Good luck to you.

smdoherty
Posts: 9
Joined: Jun 2013

I have been googling for an hour now and having issues finding sample exercises for your jaw, pre flap/jaw replacement surgery.  Do you happen to have a link you could share for those?

traceyd1
Posts: 30
Joined: Nov 2012

My husband saw a speech pathologist before beginning radiation, and then after his surgery to introduce solid foods again.  He had a modified barium swallow study prior to radiation, as well.  This was to note any changes after surgery and to have a baseline of his swallow function.  The speech pathologists at his clinic specialized in head and neck cancers and were actually conducting a study to prove the effectiveness of swallowing exercises to reduce the damage done in radiation.  I am also a speech pathologist, so I was able to help somewhat, but my area of speciality is in pediatrics, not head and neck (although, after this experience, I feel like an expert through trial-by-fire).  Basically, during the course of his radiation, he swallowed as much as he could during the day using dry swallows.  He also had to practice opening and closing his mouth for 15-20 reps several times per day.  He was also given 10-15 tongue depressors taped together stacked on top of each other.  He had to put this in his mouth between his upper and lower teeth to stretch out his mouth.  This was hard to do because the radiation causes such pain in the mouth.  This is also when I had to encourage him to do his exercises.  The therapist in me was pushing him, and he finally just looked at me and said "it hurts".  The look on his face was very frustrated and defeated.  At that point I had to just back off and be his wife.  I did purchase a bite block through a company called TAlk Tools that had several plastic pieces that looked like tongue depressors that you could add height to as the patient tolerates.  I did this because I could run this my dishwasher.  After his surgery we resumed using these after the doctor okayed it, I'm not sure how long we waited. 

The protocol with the Head and Neck Specialists he saw were pretty protective of his jaw and flap site when he got home.  He was NPO for at least three weeks after surgery and then was allowed water, and gradually worked up to shakes, pureed foods, and finally solids.  Make sure when your dad comes home from the hospital that you have a suction machine.  Even though my husband's trach tube was taken out before he left the hospital, he was still having bloody clots and mucous that gave him the sensation of choking.  Because he couldn't have water, he had to cough these up, and the suction machine was very important.

Expect several days in ICU after the surgery.  There will be drains and probably a trach.  More than likely, there will be a feeding tube through the nose which may be replaced with a tube in the stomach.  Wound care for the leg will be pretty extensive.  Make sure that your hospital sets you up with home health and they can get the wound care supplies.  The stuff you buy at CVS/Walmart, etc. is terrible and expensive.  Because my husband had both fibulas removed, his wound care supplies were doubled.  

We are now 15 months post surgery and all has returned pretty much  back to normal.  We are trying to get dental implants soon.  This is a good possibility for us since none of the tissue in his jaw has been radiated.  This is one good thing that came out of doing radiation first and surgery second.  With a sarcoma this was an option; I'm not sure about with a SCC.  Please message me if you have any other questions. 

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