Pain at tumor site 3 weeks post rad normal?

Hi all, I'm new to this board. I'm 27 and was diagnosed with stage IV tongue cancer back in april of this year. It is in both the base and oral parts of my tongue, mostly on the right side, but also dips into the left far enough that if I have surgery we're talking total glossectomy. I've been through 3 rounds of chemo (which did little to nothing) and then opted for radiation and erbitux first instead of surgery. I finished my Tomotherapy almost 3 weeks ago and thought I was healing rather nicely. I was able to swallow fine, and although I could eat really soft foods I remained on a liquid diet (nutritional shakes Yummm.) Also, I was not needing my pain meds (liquid tylenol with codiene) all that often, usually only at night. However I've noticed this week that the right side of my tongue is more tender and sensitive. There is also an increase in pain in my right ear and were the major mass of the tumor was/is located, and swallowing is a bit more intense (not super painful, but more so than it had been). I was just wondering if I should be panicking as if the tumor is now angry and rapidly growing, or if this is normal because that side of my tongue received the majority of the radiation? (possible nerve damage). I see my chemo oncologist on tuesday and will ask him, but any feed back is appreciated.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hi Kheshir
    Increased pain a few weeks after conclusion of therapy can be very normal, as this is the time of maximum swelling from radiation. Obviously you will want very careful follow-up for your cancer, but nothing about this symptom should make you panic.

    Best wishes to you, and welcome to the club

    Pat
  • ratface
    ratface Member Posts: 1,337 Member

    Hi Kheshir
    Increased pain a few weeks after conclusion of therapy can be very normal, as this is the time of maximum swelling from radiation. Obviously you will want very careful follow-up for your cancer, but nothing about this symptom should make you panic.

    Best wishes to you, and welcome to the club

    Pat

    Welcome kheshir
    Considering you had tomotherapy targeted at your tumor some lingering pain should be expected. Radiation is nasty stuff and it's effects can linger weeks after treatment. Take your pain meds until your consult on Tuesday. Best regards!
  • jim and i
    jim and i Member Posts: 1,788 Member
    I agree
    Jim's pain and swelling worsned a few weeks after treatment. He felt really good and we thought he was going to get by with very little side effects, then he started with trouble swallowing and sore throats. He had base of tongue cancer which was inoperable too because of the size. Don't panic and tell doctor all side effects even if they seem trivial or not associated with treatment.

    Blessings Debbie
  • jtl
    jtl Member Posts: 456
    Kheshir
    Hi, and welcome to the club that no one wants to join. I did not have tongue cancer but I did have cancer in the throat on the right side with the involvement of a single lymph node. I also have 35 fractions of tomotherapy with concurrent erbitux. I am now just 4 weeks post treament and my throat is still sore on the the tumor side but much improved over the last week.

    My non-professional take is that tomotherapy is able to give a higher dose to the tumor site and therefore causes more damage and without doing as much collateral damage. This is sort of what my rad onc said. If that is the case it stands to reason that the area will take longer to heal than other radiated areas. I would be nothing short of shocked it the tumor was still growing at this stage of treatment. The area probably looks like well done bacon.

    My last erbitux infusion was 5 weeks ago and I am still feeling some of the effects. I had the dreaded rash early on that cleared up after a couple of weeks, and all of my blood work has been in range. A few days ago some acne reappeared and my Mg went below the baseline so I am on Mg supplements. This is probably ok since I take it as the erbitux is still in my system and messing with cells.

    Good luck.
    John