ENT Visit

james chambliss
james chambliss Member Posts: 70
edited March 2014 in Head and Neck Cancer #1
Hello everyone. I wanted to share with you what my ENT Doctor told me today and see if anyone else was told something similar.
He saw a mass, but told me it looked flakey and puffy not like the scary cancer he saw before. Which in my mind seems like good news. He said he wanted to keep an eye on it and has me coming back in 1 month. I have a PET scan scheduled for the day after, but he said most likely will show the mass that he saw today. However, he said he didn't want to do another biopsy yet because he feels it would be a false reading. So i guess it's good news. Your thoughts and if you have heard this from your ENT before and it came out good or bad. It would be nice to know.



Regards,

James

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Wish It Were an "All Clear"
    James,
    Wish we all could hear "it all looks great, and there's no cancer and no activity". Unfortunately, many of us get the "we'll keep an eye on this" instead. In my case, it was some "activity" showing up in my follow-up PET at the end of June - doc assumes it is residual, and while elevated, within the range of what would be considered "normal". I did not have any masses left after treatment, just one lymph node that continued to be larger than normal. It was my doc's plan from the start for me to see a doctor every month after treatment - I think the "visit each month" plan is common here. I have three docs who have been rotating. If I get a good grade on next month's PET, one of my three docs is moving to once every four months. I think the idea that the doc did not want to do a biopsy now is hopeful - I would think that if he suspected a cancerous tumor, he'd biopsy right away. I guess it's gonna be a long month for you, though. Hang in there.
  • Glenna M
    Glenna M Member Posts: 1,576
    #3
    Puffy and flaky
    I have never had my ENT use that description but there was swelling for several months after treatment so he sent me for a biopsy to make sure the cancer hadn't invaded the tissue of my larynx. Fortunately it came back clean.

    If he said it didn't look like the cancer that he saw before I would take it as good news. I sure wish doctors would understand how their inconclusive answers can cause us needless worry. Just tell us what your thinking so we can know whether it is really good news or whether we should worry!!!

    I'm not a doctor but I didn't know you could get a false reading from a biopsy. I finished treatment the end of September '09 and my ENT did another biopsy 3 months later.

    Sending positive thoughts your way,
    Glenna
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi James

    Hard to tell this early in the game, a lot of times the left over scar tissue from all the treatment can look and show up on a PET as cancer, even a biopsy can show as cancer and there be nothing there.

    My dumb ENT and first Rad doc freaked out when I failed my first PET scan, they seeing the old scar tissue read it as the cancer returned and gave me more radiation and chemo for something I did not have. It really screwed me up for life. Then after the second PET came back showing the same cancer again they wanted to give me more Chemo, at that time I went to MD Anderson for a second opinion and they read the PET as scar tissue that has been 5 years ago.


    Hope it goes well for you in a month my friend.
  • james chambliss
    james chambliss Member Posts: 70
    #5
    Hondo said:

    Hi James

    Hard to tell this early in the game, a lot of times the left over scar tissue from all the treatment can look and show up on a PET as cancer, even a biopsy can show as cancer and there be nothing there.

    My dumb ENT and first Rad doc freaked out when I failed my first PET scan, they seeing the old scar tissue read it as the cancer returned and gave me more radiation and chemo for something I did not have. It really screwed me up for life. Then after the second PET came back showing the same cancer again they wanted to give me more Chemo, at that time I went to MD Anderson for a second opinion and they read the PET as scar tissue that has been 5 years ago.


    Hope it goes well for you in a month my friend.

    Thanks
    Thanks for the input everyone. I will take it and build on it.

    James
  • Pumakitty
    Pumakitty Member Posts: 652
    #6
    Hi
    When my dad went to the ENT last month they told him that the PET showed a little activity int he orginal area and that his tongue felt a little swollen. He was ready to do the biopsies and the surgery. When I talked with the oncologist he decided to wait until the end of the year and repeat the PET. His concern was that it could be scar tissue.

    Kathy
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Pumakitty said:

    Hi
    When my dad went to the ENT last month they told him that the PET showed a little activity int he orginal area and that his tongue felt a little swollen. He was ready to do the biopsies and the surgery. When I talked with the oncologist he decided to wait until the end of the year and repeat the PET. His concern was that it could be scar tissue.

    Kathy

    Hi Kathy

    As survivors we need to know about our cancer and not be afraid to question our doctors when they want to more too fast.
  • Have Walked In Your Shoes
    Have Walked In Your Shoes Member Posts: 4
    #8
    Was it Nasal Cancer?
    My husband had squamous cell (scaley skin) inside his nose with nose bleeds when diagnosed. Get a biopsy! We want to share Mel's story so that folks who have surgery on their nose get a nose mold made first. Also if you have radiation therapy gert a lead shield made for the mouth to protect your teeth and gums. Radiation ruined his teeth and he lost all on top. Now, if we'd know now what we did not know then we'd have made different medical decisions. We want to help others. SWe learned as we went through Mel's journey but feel we can help others. Mel now has no top teeth and wears a prosthetic nose. He was not told to get a nose mold prior to surgery or to get a lead shield made for his mouth until the last week of radiation therapy. We are here to help.
    pjjordan39@rocketmail.com
    http://nasalcancer.webs.com/
  • james chambliss
    james chambliss Member Posts: 70
    #9
    Have Walked In Your Shoes said:

    Was it Nasal Cancer?
    My husband had squamous cell (scaley skin) inside his nose with nose bleeds when diagnosed. Get a biopsy! We want to share Mel's story so that folks who have surgery on their nose get a nose mold made first. Also if you have radiation therapy gert a lead shield made for the mouth to protect your teeth and gums. Radiation ruined his teeth and he lost all on top. Now, if we'd know now what we did not know then we'd have made different medical decisions. We want to help others. SWe learned as we went through Mel's journey but feel we can help others. Mel now has no top teeth and wears a prosthetic nose. He was not told to get a nose mold prior to surgery or to get a lead shield made for his mouth until the last week of radiation therapy. We are here to help.
    pjjordan39@rocketmail.com
    http://nasalcancer.webs.com/

    NPC
    Yes i have Nasal Pharyngeal Carcinoma. I have already had radiation and chemo. That is why the doc thinks it's scar tissue. I think i will wait until he feels the need to biopsy again. I feel i have been through enough for a while.


    Regards,

    James
  • ekdennie
    ekdennie Member Posts: 238 Member
    #10
    james chambliss said:

    NPC
    Yes i have Nasal Pharyngeal Carcinoma. I have already had radiation and chemo. That is why the doc thinks it's scar tissue. I think i will wait until he feels the need to biopsy again. I feel i have been through enough for a while.


    Regards,

    James

    MEC
    I had a mucoepidermoid carcinoma removed from my palate in august. it had grown into my sinus cavity. at my last ENT appointment he said he saw some bumps that he wanted to keep an eye on, but that based on a quick in-office test he feels they might not be cancerous. however, I have become a sceptic of those words as that was what I was told about my lump on my palate, but not by him, by three other doctors before the biopsy. my ENT is more likely to run a test than not, so I know I am finally in good hands! that was just before my radiation treatments began, and he asked me to come back in a month to re-examine the area. you are not alone in having an ENT see something and want to monitor it. I hope yours is just scar tissue.

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