BOT recurrence?

Mikemetz
Mikemetz Member Posts: 465 Member
edited December 2011 in Head and Neck Cancer #1
I completed my rads + chemo for BOT MEC in May of 2009, and have had NED on all scans since then. Of course the big question is "Can my cancer come back?" The docs have told me that recurrence of this cancer is not common, and when it does happen, it would be rare for it to be located at or near the same place. After completing hyperbaric treatments and having one molar extracted, my healing has been very slow, and the pain level in that area has increased somewhat steadily. My ENT today told me that he's not sure what's going on yet, but can't rule out a recurrence. I am going to be scheduled for more scans, and to see a local doctor who is very highly respected on this area of medicine.

So, that's a long way of asking--have any of you out there with a similar diagnosis ever heard of or experienced their BOT cancer coming back in the same location? Just looking for something to go on until the scan comes around and I get the results.

Mike

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Hi Mike
    I had HBO and a molar extracted a few years back. It took a long time to heal the site, maybe 6 months. I don't remember having lots of pain though.

    The patterns seen after treatment for BOT cancer for those of us who are not permanently cured are as follows:

    1) Reoccurance. Reoccurance occurs basically within 3 years. 50% in the first year, 75% by 24 months, and almost 100% at 36 months. Since this disease is locally recurring, and spreads basically by contiguous spread or lymphatics, it tends to reoccur in the same place or immediately adjacent to the original cancer.

    2) Second primary. Second primaries have a distinctly different distribution. They average 12 years after the original cancer, and are found in different locations. I have one such right now.

    If you are having increasing pain at the extaction site, the obvious questsion is how does this relate to your slow healing? Is the tissue white? Do you have a bad odor? What does your dentist have to say? Obviously, the thrust here is still the issue of osteoradionecrosis, rather than cancer reoccurance.

    Best.

    Pat
  • rarph123
    rarph123 Member Posts: 64
    #3
    longtermsurvivor said:

    Hi Mike
    I had HBO and a molar extracted a few years back. It took a long time to heal the site, maybe 6 months. I don't remember having lots of pain though.

    The patterns seen after treatment for BOT cancer for those of us who are not permanently cured are as follows:

    1) Reoccurance. Reoccurance occurs basically within 3 years. 50% in the first year, 75% by 24 months, and almost 100% at 36 months. Since this disease is locally recurring, and spreads basically by contiguous spread or lymphatics, it tends to reoccur in the same place or immediately adjacent to the original cancer.

    2) Second primary. Second primaries have a distinctly different distribution. They average 12 years after the original cancer, and are found in different locations. I have one such right now.

    If you are having increasing pain at the extaction site, the obvious questsion is how does this relate to your slow healing? Is the tissue white? Do you have a bad odor? What does your dentist have to say? Obviously, the thrust here is still the issue of osteoradionecrosis, rather than cancer reoccurance.

    Best.

    Pat

    What is the treatment for reoccurance of B.O.T Had full treatment of Chemo/Rad
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    rarph123 said:

    What is the treatment for reoccurance of B.O.T Had full treatment of Chemo/Rad

    It is individualized
    Either surgery or repeat radiation, by IMRT.
  • rarph123
    rarph123 Member Posts: 64
    #5
    longtermsurvivor said:

    It is individualized
    Either surgery or repeat radiation, by IMRT.

    Had I.M.R.T 36 treatments with 8 chemo- one each week with Rad. Can you have rad in the same area again? thanks for your reply
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    rarph123 said:

    Had I.M.R.T 36 treatments with 8 chemo- one each week with Rad. Can you have rad in the same area again? thanks for your reply

    yes, you actually can
    I am being radiated for the second time, beginning here in a couple of weeks. Several others here have as well.
  • Pam M
    Pam M Member Posts: 2,196
    #7
    No Knowledge to Share - Just Good Wishes
    Hope you can get the scans and appointment with the new doc soon.
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #8
    longtermsurvivor said:

    yes, you actually can
    I am being radiated for the second time, beginning here in a couple of weeks. Several others here have as well.

    Thanks for your replies
    Thanks to all who replied. I learned that it can sometimes take a long time to heal from ORN, so that gives me more hope that it's just a matter of time for mine to heal as well. Still worried about the pain, though.

    Also, I was not aware that a location can be radiated twice.

    Mike
  • jim and i
    jim and i Member Posts: 1,788 Member
    #9
    BOT cancer
    Mike,

    Husband had BOT diagnosed in May 2011, no surgery, 40 RADS 2 cisplatin and 3 Erbitux. There was a thin ribbon on his first PET which makes me worry that they did not get it all and may reoccur. It is helpful to know they can retreat. His recovery has been really slow.

    Praying your symptoms are something else besides reoccurence and easily cures.

    Blessings
    Debbie

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