Oral Cancer :(

Sessg
Sessg Member Posts: 1
edited August 2016 in Head and Neck Cancer #1

Hello,  my boyfriend was just diagnoised with the adenoid cystic carcinoma cancer located in his mouth specifically in the hard palate section.  They advised us that he would need to under go surgery to remove it,, this would mean removing his hard palate , his full upper teeth and that they would reconstruct it with his femur bone.  They did a PET scan to see if it spread and thankfully it did not.  They also advised that since they would use his femur bone to reconstruct his hard palate he most likely will never be able to hold a denture.  that would mean no teeth.  I am very worried about the surgery, I want him to be himself after this is all over And not become depressed. The doctors have set a surgery day but I really feel like I need more questions answered.  Or if there is anyone else going through this issue?  I want him to have feeling in his face and be able to wear a type of denture or to surgically have something.  And of course for the cancer to be removed.  We just had our 6 month old daughter and as you can imagine we are going through the worst of times.  He is only 25 years old and I am 23.  All comments are welcome.  

 

Thank  you for reading. 

Comments

  • MJG1
    MJG1 Member Posts: 137 Member
    #2
    Sorry Sessg

    First, I'm so sorry you have to be here!  I hope you are able to be near a great hosptial for cancer treatment.  Deal with getting rid of it first then worry about the rest.  It is a long and scary road and we were just put on this path in July.  Best of luck to you both.  One day at a time and keep your eyes on the end goal...NO EVIDENCE OF DISEASE! ;)

  • Pixie2016
    Pixie2016 Member Posts: 2
    edited August 2016 #3
    So sorry to hear that

    Wink

    hi sessg, I understand how you feel. It can be very overwhelming! I am 34 and was diagnosed with low grade chondrosarcoma in April 2015. I had a cartilaginous tumor in my nasal cavity that extended in my face to my hard palate section. I've had one surgery to remove the tumor. However, I still have some left inside...in my mouth in the hard palate section. Ive been told that the only way to get that part removed is with an extensive reconstructive surgery....one option they mentioned was a "flap" type of surgery. Removing my upper front teeth and getting a prosthesis or a denture. I've gotten a second opinion and was told that I don't have to get the surgery now or may never need to if as long as the tumor that is left does not show signs of additional growth and remains contained. This will mean frequent visits to the doctor and frequent scans. But I have faith that it will remain this way and I don't need the second surgery. A second opinion can make a difference!!! Best of luck to you both! 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
    welcome

    Sessg,

    Welcome to the H&N forum, I am very sorry that you are here.

    We have H&N members who have traveled your path with success.  My cancer was stage IVa, scc, bot, 1 lymph node, hpv+ and included surgery, radiation with Erbitux. It is different from yours, but is no cake walk.

    As difficult as it is, the more you adjust too and accept cancer and the treatment the better you will do.  It takes some time and soul searching to get through.

    You might entertain a 2nd opinion, for peace of mind.

    We can provide you with information once your plan is in place.

    Best of luck,

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    Sessg

    welcome to the group, and as the others expressed-I'm sorry you find the need to be here. The truth is life will definitely be different from now on...but that doesn't mean life will be bad. Fighting this disease is a hard, hard road but the cure rates are improving and there are many in this board who can attest to that. Hopefully you are being seen in a hospital that has a tumor board - a multidisciplinary group of specialists who come up with a treatment plan together. They'll get input from radiology, chemotherapy , surgery, dentistry etc. in this case a team approach is best. Ask lots of questions. If you are worried about the emotional toll this will take seek out professional help early - for your boyfriend and for you as caregiver. Come here often for info, support and a safe place to vent. We'll all be pulling for you.

    Barbara

  • robswife87
    robswife87 Member Posts: 209
    #6
    Sorry to hear

    Don't want to be a debbie downer here but, during this time he will most likley be somewhat depressed. It is only natural. Most patients have some sort of depression or another because they are sick and miserable and there is nothing they can do about it. Treatment needs to be done. The odds are he also will not be the same person after this is over. Not meaning bad or good here, they just end up with different perspectives than before. His young age makes this so sad. 

    I would see about a second opinion and hoping you are near a major cancer center that can do this treatment. I can say that you can only let him feel the way he feels during this time. Stay positive and focused but don't tell him how to feel about it, it only makes them mad, because it is them and not you that is going through this. 

    Most important, no matter teeth or no teeth you want and need him here for you and your baby, so he needs to be treated.

    Sandy

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