Severe Edema...developed lumps on my neck...anybody experience this?

buellman91
buellman91 Member Posts: 32
in Head and Neck Cancer #1
I had a Stage 2 tonsil tumor in 2006 on the left side of my neck and just got radiation....experienced severe post rad pain for 6 to 8 months...had a new Stage 4 tumor in January of this year on the other side of my neck...got radiation/chemo.....now 4 months post treatment and have a large lump on my throat and very severe pain....on Fentanyl patch, Gabapentin and Subsys.....just like in 2006 my PET shows this area as hot and I am actually regressing as far as swallowing, eating etc......my pain doc says i am not abnormal but the lump(s) are unusual....they gave me antibiotics thinking the lump might have been a clogged salivary gland....took them for 2 weeks so far but no change....anyone else go through anything like this?
Thanks

Comments

  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #2
    Not quite the same
    Hi Buellman, I had stage II tonsil also but I only had 33 rads, now 4 1/2 months
    out I'm eating pretty well, some taste ,energy good, no pain and not on any
    meds whatsoever. My only problem is I don't have any saliva yet and when I
    eat the two glands under my chin swell and go really hard, I think they are trying
    to release saliva but maybe blocked or something. When I've finnished eating
    after a while they go back down to normal ( whatever normal is ).
    Hopefully they will find out your probem ( if it is ) and make things right.

    God bless
    Tonsil dad,

    Dan.
  • buellman91
    buellman91 Member Posts: 32
    #3
    Tonsil Dad said:

    Not quite the same
    Hi Buellman, I had stage II tonsil also but I only had 33 rads, now 4 1/2 months
    out I'm eating pretty well, some taste ,energy good, no pain and not on any
    meds whatsoever. My only problem is I don't have any saliva yet and when I
    eat the two glands under my chin swell and go really hard, I think they are trying
    to release saliva but maybe blocked or something. When I've finnished eating
    after a while they go back down to normal ( whatever normal is ).
    Hopefully they will find out your probem ( if it is ) and make things right.

    God bless
    Tonsil dad,

    Dan.

    Interesting!!!
    Thanks Dan, I seem to notice my "lumps" changing in size somewhat but not drastically. They are also very sensitive and hurt when you touch. Have you had a PET scan yet? Needless to say I am concerned about that spot coming up hot on the scan. My energy and eating is terrible but I am on so much pain meds I guess I attribute the sluggishness to the meds.
    Thanks Bill
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #4
    buellman91 said:

    Interesting!!!
    Thanks Dan, I seem to notice my "lumps" changing in size somewhat but not drastically. They are also very sensitive and hurt when you touch. Have you had a PET scan yet? Needless to say I am concerned about that spot coming up hot on the scan. My energy and eating is terrible but I am on so much pain meds I guess I attribute the sluggishness to the meds.
    Thanks Bill

    PET
    I had a pet about 4 weeks ago and it came back NED. There was a little
    hot spot near where the treatment was but my onc said it was no cause
    for concern as it might be imflamation so I'm having a PET with contrast
    in Oct and we will see from there. In the meantime just monitering it.

    God bless
    Tonsil dad,

    Dan.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    infection is the most likely culprit
    either abscessed salivary gland from obstruction or necrotic tumor. We have had a number of people show up on the board with this. I personally have had six episodes of parotitis since my original rads. I have been slightly ill with some of them, really sick with others. Tumor is actually not at the top of the list for you.

    Pat
  • buellman91
    buellman91 Member Posts: 32
    #6
    longtermsurvivor said:

    infection is the most likely culprit
    either abscessed salivary gland from obstruction or necrotic tumor. We have had a number of people show up on the board with this. I personally have had six episodes of parotitis since my original rads. I have been slightly ill with some of them, really sick with others. Tumor is actually not at the top of the list for you.

    Pat

    Encouraging!!
    That is good news especially coming from you. I have been taking antibiotics and I thought the lump was getting smaller but I did not want to celebrate yet. Coincidentally, the tumor board is looking at my last PT tomorrow to voice their oppinion. I was under the impression that the antibiotics would show some immediate results but my Pain Doc said in these circumstances it would take a while. Everyone has scoped this, massaged this and said "no mass/tumor" but I was still worried.
    Thanks for responding
    Bill
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    buellman91 said:

    Encouraging!!
    That is good news especially coming from you. I have been taking antibiotics and I thought the lump was getting smaller but I did not want to celebrate yet. Coincidentally, the tumor board is looking at my last PT tomorrow to voice their oppinion. I was under the impression that the antibiotics would show some immediate results but my Pain Doc said in these circumstances it would take a while. Everyone has scoped this, massaged this and said "no mass/tumor" but I was still worried.
    Thanks for responding
    Bill

    blood flow is compromised
    in the entire area. antibiotics dont penetrate the tissues well, and things tend to change very slowly. my last eposode took over six weeks to resolve. peeled the skin off of my lower face, too. ENT onc said he had never seen that before. OK, but I have:). One day atba time, thats all u can do with this. Do u have fever or other symptoms?
  • blackswampboy
    blackswampboy Member Posts: 341
    #8
    neck infection
    during tx, I developed a huge lump on the other side of my neck from the tumor. it came out of nowhere and got so enormous that my mask wouldn't fit.
    so they stuck a tube in it to drain (ouch), but the gunk was so thick they had to irrigate with antibiotic and drain for three days. bizarre.
    hope your antibiotics take care of it without the three-day hospital hospitality that I got.
  • buellman91
    buellman91 Member Posts: 32
    #9
    blackswampboy said:

    neck infection
    during tx, I developed a huge lump on the other side of my neck from the tumor. it came out of nowhere and got so enormous that my mask wouldn't fit.
    so they stuck a tube in it to drain (ouch), but the gunk was so thick they had to irrigate with antibiotic and drain for three days. bizarre.
    hope your antibiotics take care of it without the three-day hospital hospitality that I got.

    Ouch!!!
    I am certainly sorry you guys had to go through that misery but at least it gives me hope that it is something other than a recurrence. I was doing pretty good with eating solid foods and maintaining my weight and then this lump shows up and has made eating or swallowing in general a real pain. I get bad pains in my jaw, neck, ears and chin. My Pain guy says it is nerve pain and what he is giving me has caused the pain to subside but it has got me in zombie land. Thanks again for the response. Any one else?
    Bill
  • buellman91
    buellman91 Member Posts: 32
    #10
    buellman91 said:

    Ouch!!!
    I am certainly sorry you guys had to go through that misery but at least it gives me hope that it is something other than a recurrence. I was doing pretty good with eating solid foods and maintaining my weight and then this lump shows up and has made eating or swallowing in general a real pain. I get bad pains in my jaw, neck, ears and chin. My Pain guy says it is nerve pain and what he is giving me has caused the pain to subside but it has got me in zombie land. Thanks again for the response. Any one else?
    Bill

    L.T.S? other symptoms---fever
    To answer L.T.Survivor, i have not been running a fever. One of the side effects of this med I am on is headaches and I have been taking ibuprofin for the headaches which may have masked the fever. I stopped the ibuprofin and got a refill of the antibiotics. I may be imagining the lump getting smaller but it definitely varies in size based on how long ago I had been chewing food which is very aggrivating.I find out tomorrow what the tumor board thinks about my last PT scan
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
    buellman91 said:

    L.T.S? other symptoms---fever
    To answer L.T.Survivor, i have not been running a fever. One of the side effects of this med I am on is headaches and I have been taking ibuprofin for the headaches which may have masked the fever. I stopped the ibuprofin and got a refill of the antibiotics. I may be imagining the lump getting smaller but it definitely varies in size based on how long ago I had been chewing food which is very aggrivating.I find out tomorrow what the tumor board thinks about my last PT scan

    best of luck
    tomorrow, then. It is hard not to imagine things as getting bigger,or getting smaller, isnt it? LOL, I mash around at stuff all the time. Every new finding has to be explored over and over. Hoping u get some relief.
  • buellman91
    buellman91 Member Posts: 32
    #12
    longtermsurvivor said:

    best of luck
    tomorrow, then. It is hard not to imagine things as getting bigger,or getting smaller, isnt it? LOL, I mash around at stuff all the time. Every new finding has to be explored over and over. Hoping u get some relief.

    News is not good
    The tumor board says that my latest PT scan has an area of concern right where the lump is and wants me to get an Biopsy...same thing happened to me in 2006 where they said my scans showed a recurrence but the biopsy was negative....If it is new cancer I have already had radiation on both sides of my neck plus chemo...my surgeon says surgery is risky so now what
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #13
    buellman91 said:

    News is not good
    The tumor board says that my latest PT scan has an area of concern right where the lump is and wants me to get an Biopsy...same thing happened to me in 2006 where they said my scans showed a recurrence but the biopsy was negative....If it is new cancer I have already had radiation on both sides of my neck plus chemo...my surgeon says surgery is risky so now what

    Hi Buellman ....
    Just saw your post ....I can't begin to answer the "now what" question since I am still just 7 months out from my BOT cancer....however, I hope you did not mind I whispered a prayer that your biopsy comes back negative, I truly do.

    Keep us posted.

    Best,

    Tim
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #14
    buellman91 said:

    News is not good
    The tumor board says that my latest PT scan has an area of concern right where the lump is and wants me to get an Biopsy...same thing happened to me in 2006 where they said my scans showed a recurrence but the biopsy was negative....If it is new cancer I have already had radiation on both sides of my neck plus chemo...my surgeon says surgery is risky so now what

    one day at a time
    I know this is scant help. PET reacts to tumor and infection both, so you will have to go through the process to know how this will play out.

    best wishes

    Pat

Discussion Boards