Gum/gingiva cancer

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Debi16043
Debi16043 Member Posts: 53
in Head and Neck Cancer #1
Hi, Im scc T4aM0N0 gum cancer that spread to mandible, jaw bone. Removed mandible, pulled all teeth, free flap leg. 6 weeks radiation, no chemo. June 15, 2012 i will be a one year survivor. I have no idea what my odds are, i ask my surgeon at md anderson and she said she doesnt give prognosis because shes not god. Ok so i have no clue other than i think stage 4 is not all that ggod. Is there anyone on this website with experience in scc gum cancer? Oh yea removed 75 lympnodes on one side all negative and neck disection.

I have only posted few times but am regular reader.

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  • Hal61
    Hal61 Member Posts: 655
    #2
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    Hi Debi, because H&N cancers are unfortunately often diagnosed by means of secondary involvement, Stage 4, is a common diagnosis here. Stage 4 is not all that good; on the other hand doctors treating our population have been getting a lot of practice, and a lot better at treatment.

    I'm not a gum cancer survivor, I was SCC, base of tongue, with lymph involvement on one side. You've had a lot rougher road than I had, and it's great that you're one year NED. That's a very positive milestone. By reaching one year, you've considerably increased whatever odds you might have been given.

    I have an ENT. First time I met him in his office, he distracted me, told me to open my mouth and had a feel of my yet untreated tumor shile I gagged. As he removed his hand he said he would give me a 70 to 80% chance of a cure. He's at the other end of the spectrum from your surgeon. He'll give you a ballpark figure anytime. After my chemo, 35 rads, I had a partial neck dissection; of 17 removed, 3 had cancer. The three were in close proximity to my original two involved nodes, which had been killed by the chemo and rads.
    I was told further chemo had shown no different result in longivity in cases like mine.

    So what are my odds now? I'm almost to two years NED, and my chances, I'd say, are not that bad. Every day your odds get a bit better also.


    best, Hal
  • Debi16043
    Debi16043 Member Posts: 53
    #3
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    Hal61 said:

    Hi Debi, because H&N cancers are unfortunately often diagnosed by means of secondary involvement, Stage 4, is a common diagnosis here. Stage 4 is not all that good; on the other hand doctors treating our population have been getting a lot of practice, and a lot better at treatment.

    I'm not a gum cancer survivor, I was SCC, base of tongue, with lymph involvement on one side. You've had a lot rougher road than I had, and it's great that you're one year NED. That's a very positive milestone. By reaching one year, you've considerably increased whatever odds you might have been given.

    I have an ENT. First time I met him in his office, he distracted me, told me to open my mouth and had a feel of my yet untreated tumor shile I gagged. As he removed his hand he said he would give me a 70 to 80% chance of a cure. He's at the other end of the spectrum from your surgeon. He'll give you a ballpark figure anytime. After my chemo, 35 rads, I had a partial neck dissection; of 17 removed, 3 had cancer. The three were in close proximity to my original two involved nodes, which had been killed by the chemo and rads.
    I was told further chemo had shown no different result in longivity in cases like mine.

    So what are my odds now? I'm almost to two years NED, and my chances, I'd say, are not that bad. Every day your odds get a bit better also.


    best, Hal

    Thank you for sharing hal.
    Thank you for sharing hal. Keep up the good work. Im not sure what you mean by secondary involvement, does that mean reocurring cancer?
  • Hal61
    Hal61 Member Posts: 655
    #4
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    Debi16043 said:

    Thank you for sharing hal.
    Thank you for sharing hal. Keep up the good work. Im not sure what you mean by secondary involvement, does that mean reocurring cancer?

    Uh-uh
    No Debi, it doesn't mean recurrance, it means that the original "primary" cancer spot or tumor, has or had spread to another spot. In the case of H&N cancers, particularly BOT (base of tongue, like mine and many other here), the cancer at the tongue base is just to small to feel or send you to a doc. Often it spreads to the lymph nodes on one or both sides. Then the lymph nodes become enlarged. Lymph nodes become enlarged in the case of lots of flus, colds, and infections, but mine stayed up for over two weeks, and the Internet said to see the doc. I didn't have any cold, flu, etc.

    My doc sent me right to a surgeon for a biopsy. More often than not though, people see their primary docs, and are routinely given a course of antibiotics, which don't help, so they go back and diagnosis is drawn out.

    That's what I mean by secondary involvement; not the same as recurrance.

    best, Hal
  • Pam M
    Pam M Member Posts: 2,196
    #5
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    Hi Debi
    Welcome to a club no one wants to qualify to join. Congrats on your survivorship.

    I, too, was diagnosed with stage four base of tongue cancer with two nodes affected. I thought that stage four meant that your were most surely going to die. My RO told me that my condition was life-threatening, but did not mean certain death. He seemed to think that with treatment, and the right attitude, we had a "good shot" at doing well. At first, I was hung up on finding "the odds" that the docs weren't giving me. I didn't like what I was finding online. THEN I came to this site, and found hope and - not just survivors - LOTS of survivors. "Screw the stats" became one of my favorite lines. My diagnosis was nearly two and a half years ago - it's nearly fifteen months since my last bit of treatment (neck dissection).

    75 lymph nodes on one side??!! Wow. My ENT removed all my nodes on the right side of my neck - - I only had five. My doc said the number varies widely - seems like you and I are on opposite ends of that spectrum - glad yours weren't cancerous.
  • Debi16043
    Debi16043 Member Posts: 53
    #6
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    Pam M said:

    Hi Debi
    Welcome to a club no one wants to qualify to join. Congrats on your survivorship.

    I, too, was diagnosed with stage four base of tongue cancer with two nodes affected. I thought that stage four meant that your were most surely going to die. My RO told me that my condition was life-threatening, but did not mean certain death. He seemed to think that with treatment, and the right attitude, we had a "good shot" at doing well. At first, I was hung up on finding "the odds" that the docs weren't giving me. I didn't like what I was finding online. THEN I came to this site, and found hope and - not just survivors - LOTS of survivors. "Screw the stats" became one of my favorite lines. My diagnosis was nearly two and a half years ago - it's nearly fifteen months since my last bit of treatment (neck dissection).

    75 lymph nodes on one side??!! Wow. My ENT removed all my nodes on the right side of my neck - - I only had five. My doc said the number varies widely - seems like you and I are on opposite ends of that spectrum - glad yours weren't cancerous.

    Thanks. I know my surgeon
    Thanks. I know my surgeon at md anderson, dr. Lewis said she had never seen that many on one side. Im still learning a lot on my gum cancer. My doctor said if it hadnt gone into the mandible it would have only been a stage one but its considered agressive since it invaded the bone. Im doing well. I am now walking four miles a day which is more than before surgery. Bye bye cancer. Lol
  • Debi16043
    Debi16043 Member Posts: 53
    #7
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    Pam M said:

    Hi Debi
    Welcome to a club no one wants to qualify to join. Congrats on your survivorship.

    I, too, was diagnosed with stage four base of tongue cancer with two nodes affected. I thought that stage four meant that your were most surely going to die. My RO told me that my condition was life-threatening, but did not mean certain death. He seemed to think that with treatment, and the right attitude, we had a "good shot" at doing well. At first, I was hung up on finding "the odds" that the docs weren't giving me. I didn't like what I was finding online. THEN I came to this site, and found hope and - not just survivors - LOTS of survivors. "Screw the stats" became one of my favorite lines. My diagnosis was nearly two and a half years ago - it's nearly fifteen months since my last bit of treatment (neck dissection).

    75 lymph nodes on one side??!! Wow. My ENT removed all my nodes on the right side of my neck - - I only had five. My doc said the number varies widely - seems like you and I are on opposite ends of that spectrum - glad yours weren't cancerous.

    Thanks. I know my surgeon
    Thanks. I know my surgeon at md anderson, dr. Lewis said she had never seen that many on one side. Im still learning a lot on my gum cancer. My doctor said if it hadnt gone into the mandible it would have only been a stage one but its considered agressive since it invaded the bone. Im doing well. I am now walking four miles a day which is more than before surgery. Bye bye cancer. Lol

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