Accepted for Tranoral Robotic Surgery

lizziek
lizziek Member Posts: 27
in Head and Neck Cancer #1
I saw Dr. Eric Genden at Mount Sinai last Thursday. I got escorted back to the ENT area and everyone I encountered was very nice. Dr. Genden showed me my tumor (ugly thing) hanging from the beginning of my larynx pretty far up from the vocal cords. He was very personable and explained the three different type of these supraglottic tumors (smoker type, HPV positive and HPV negative). I am not a smoker so it may be HPV.

They have a team approach so he had me spend about half an hour with the oncologist who gave me the argument for doing just radiation and chemo without surgery. After listening to the permanent side effects (neck stiffness, loss of swallowing and saliva production) I told him I would prefer surgery. It is in my airway so I have to get it removed anyways, why not try to get it all. Dr. Genden described the neck resection and ensured me he would not be cutting major nerves and muscles. As I see it I want to get rid of this thing and if he can't get it all or it's spread I will have to do the radiation/chemo anyways, but if he gets it all I am home free. Easy choice. All will be decided once they biopsy the tumor on the operating table.

The best news was that he thought it could turn out not to be cancer at all. He thought I was a good candidate for the robotic surgery, so I am scheduled for March 18th. I was hoping for this week but they don't get the DaVinci machine this week.

I am being treated by one of the best (he's done close to 200 of the robotic surgeries and was the first in New York). He is a very nice person who instills a lot of confidence. I can't wait to get this done. I am not afraid of the surgery, I may be in the hospital only a couple of days. I am mentally preparing for what will face me if I have to do the radiation and chemo. All your posts gave me a pretty good idea what that is all about.

Next hurtle is getting out of network insurance coverage. I am hopeful since both my primary care and ENT in Albany will be urging the insurance company to cover this.

I am primarily worried about not being able to work. I am an independent consultant with no disability insurance, if I don't work I don't earn. Most of my work is on the computer but I make phone calls and visits to clients and go to conferences. Can anyone tell me if they were able to work at all during radiation and chemo treatments and how long it took to get back to where they could work again?

Be thinking of me on March 18th.

Lizzie

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
    Lizzie
    Great to hear you've been accepted, and Dr. Genden has the opinion you've said he has. Still a lot to be determined, but it would seem you're on a great path, Lizzie. Might still just be localized, and other than the Op. maybe the most he'll advise is just a little rads to make sure the area is mega-clean. Have a co-worker with a similar growth around his larynx, and all he had done was a series of rads. His voice had gotten worse over the course of about a year, and is a smoker. Talks better now, and says his Dr. has given him only good reports, so you just might be on a best-case scenario road with this thing, Lizzie. I hope and Pray that's the case, as it would truly be a great thing.

    Believe

    kcass
  • Kimba1505
    Kimba1505 Member Posts: 557
    #3
    Kent Cass said:

    Lizzie
    Great to hear you've been accepted, and Dr. Genden has the opinion you've said he has. Still a lot to be determined, but it would seem you're on a great path, Lizzie. Might still just be localized, and other than the Op. maybe the most he'll advise is just a little rads to make sure the area is mega-clean. Have a co-worker with a similar growth around his larynx, and all he had done was a series of rads. His voice had gotten worse over the course of about a year, and is a smoker. Talks better now, and says his Dr. has given him only good reports, so you just might be on a best-case scenario road with this thing, Lizzie. I hope and Pray that's the case, as it would truly be a great thing.

    Believe

    kcass

    All sounds good!!!
    My partner. Mark, was left tonsi, SCC HPV+, stage IV in April 2010. He had TOR (Trans Oral Robotic Surgery) in Philly, with the orginator. The robot took out his tonsil, part of his tongue and part of his soft pallet. This was followed up by radical neck dissection, taking the muscle but not the nerve. Then he had 6 weeks of chemo and radiaiton. He worked the whole time. Of course he took the day off for his treatment, but he did some form of work EVERY day, and his voice matters in his work. I put a new message on his voice mail, but other than that he worked. He is currently 6+ months post treatment with clean scans. His scenerio is his...but I tell you this because it is possible. I think the robot and his ENT surgeon were HUGE in his treatment. He had an amazing radiology ocnologist that did a lot to spare his saliva function and his quality of of life.
    Life is Good.
    Good luck,
    Kim
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    Kimba1505 said:

    All sounds good!!!
    My partner. Mark, was left tonsi, SCC HPV+, stage IV in April 2010. He had TOR (Trans Oral Robotic Surgery) in Philly, with the orginator. The robot took out his tonsil, part of his tongue and part of his soft pallet. This was followed up by radical neck dissection, taking the muscle but not the nerve. Then he had 6 weeks of chemo and radiaiton. He worked the whole time. Of course he took the day off for his treatment, but he did some form of work EVERY day, and his voice matters in his work. I put a new message on his voice mail, but other than that he worked. He is currently 6+ months post treatment with clean scans. His scenerio is his...but I tell you this because it is possible. I think the robot and his ENT surgeon were HUGE in his treatment. He had an amazing radiology ocnologist that did a lot to spare his saliva function and his quality of of life.
    Life is Good.
    Good luck,
    Kim

    sounds like a cliche
    Lizzie, but just take it one step at a time. You gain nothing by agonizing over possible chemo and radiation. Surgery if applicable is always the best option. Congrats on being acceapted. I saw the operation done on video and was totally impressed. Your doctor sounds like he is at the top of his game.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Lizzie
    I too am glad you been accepted and hope and pray all will go well for you. I did work through my treatment but not at any normal paste, I was able to talk but some days it hurt like hell.

    Take care
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    March 18th
    You got it Lizzie.....

    Thoughts and prayers your way.

    Best,
    John
  • lizziek
    lizziek Member Posts: 27
    #7
    Kimba1505 said:

    All sounds good!!!
    My partner. Mark, was left tonsi, SCC HPV+, stage IV in April 2010. He had TOR (Trans Oral Robotic Surgery) in Philly, with the orginator. The robot took out his tonsil, part of his tongue and part of his soft pallet. This was followed up by radical neck dissection, taking the muscle but not the nerve. Then he had 6 weeks of chemo and radiaiton. He worked the whole time. Of course he took the day off for his treatment, but he did some form of work EVERY day, and his voice matters in his work. I put a new message on his voice mail, but other than that he worked. He is currently 6+ months post treatment with clean scans. His scenerio is his...but I tell you this because it is possible. I think the robot and his ENT surgeon were HUGE in his treatment. He had an amazing radiology ocnologist that did a lot to spare his saliva function and his quality of of life.
    Life is Good.
    Good luck,
    Kim

    Thanks for the person report
    hi Kim,

    Thanks so much for sharing Mark's experience it gives me some hope of being able to work and earn some through this ordeal. What was the time between surgery and the start of the chem/radiation treatment?

    Some of my work requires visiting clients and making presentations. Based on Mark's experience will that be possible during the treatment phase? Any permanent effects from the radiation and chemo?

    Thanks
    Lizzie

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