Scar Tissue??

Stage 4 Tonsil cancer. Lymph node involvement both sides. No surgery. 7 weeks of cisplatin and radiation. Discovered with lump on right side just underneath jaw. Now a year out of treatment. After treatment the "lump" was gone. Then "grew back." Oncologist says it is just "scar tissue." From the radiation? Never had surgery. CT scan and then Pet scan a month or so after treatment completed show tumor almost nonexistent. But then this "growth" of "scar tissue." You can see the swelling on the right side of neck below the jaw line. But oncologist swears just scar tissue. However, he will not do any CT or Pet scans, ever, unless he sees "something." Insurance will not pay otherwise apparently. Now this "lump" or "scar tissue" will move side to side if pressed.

Any thoughts? No symptoms, no pain, no difficulty swallowing (or no more so than expected).

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102
    Ron, i'd get a second

    Ron, i'd get a second opinion.  I think insurance has to pay for that.  maybe the 2nd doc will do some scans.  If it were me, i wouldn't accept "scar tissue".  But I tend to worry a lot when it isn't always necessary too, so who am i?  but, you have the right to a 2nd opinion, i'd use that right for sure.  please let us know how this turns out.

    God bless you,

    dj

  • ratface
    ratface Member Posts: 1,336
    I have two thoughts

    and I usually am only capable of one thought at a time.  Reminds me of the first time my dentist saw me after treatment and freaked out over the swelling. He ran downstairs to the oncologist office. This is a trained dentist specializing in H&N patients. Needless to say it was just scar tissue and remains there till this day.  

    The second thought is why not do a Fine needle in office biopsy. Insurance cannot balk at that and it's reasonable, still might not yield any answers, but it's a logical next step? I personally don't like the, "wait and see position" many ENTS take. It's really your decision, ENT's are plentifull.

  • hwt
    hwt Member Posts: 2,328
    ratface said:

    I have two thoughts

    and I usually am only capable of one thought at a time.  Reminds me of the first time my dentist saw me after treatment and freaked out over the swelling. He ran downstairs to the oncologist office. This is a trained dentist specializing in H&N patients. Needless to say it was just scar tissue and remains there till this day.  

    The second thought is why not do a Fine needle in office biopsy. Insurance cannot balk at that and it's reasonable, still might not yield any answers, but it's a logical next step? I personally don't like the, "wait and see position" many ENTS take. It's really your decision, ENT's are plentifull.

    Ron

    You can always tell your doc that you aren't real comfortable with this being scar tissue since you did not have surgery. Ask is they would call your insurance and request pre-authoriztion for a scan. 

  • Ron Silver
    Ron Silver Member Posts: 94
    hwt said:

    Ron

    You can always tell your doc that you aren't real comfortable with this being scar tissue since you did not have surgery. Ask is they would call your insurance and request pre-authoriztion for a scan. 

    This is the treating

    This is the treating oncologist, not the ENT, I don't see an ENT just the treating oncologist every couple of months, who told me after the PET scan a few months after treatment that their will be no more scans, ever, unless he finds evidence of a new primary or a reoccurance. 

    With respect to the swelling, the first time he said it was muscle tissue.  The next time it was scar tissue.  The last time-again scar tissue and he set the next appoint four months down the line.  I got to contact the insurance carrier and look into the procedure to get a second opinion.  Thanks to all of you for your insight. 

  • phrannie51
    phrannie51 Member Posts: 4,716

    This is the treating

    This is the treating oncologist, not the ENT, I don't see an ENT just the treating oncologist every couple of months, who told me after the PET scan a few months after treatment that their will be no more scans, ever, unless he finds evidence of a new primary or a reoccurance. 

    With respect to the swelling, the first time he said it was muscle tissue.  The next time it was scar tissue.  The last time-again scar tissue and he set the next appoint four months down the line.  I got to contact the insurance carrier and look into the procedure to get a second opinion.  Thanks to all of you for your insight. 

    Get thee to an ENT....

    he can scope and probe, and make a decent second opinion.....he can also order a scan if he thinks it's necessary.  This is the first time I've heard of NO scans at all for those within the first 2 years of treatment.

    p

  • donfoo
    donfoo Member Posts: 1,763 Member
    fna and ent

    I'm with Ratface and P on this. If it can be felt, a FNA can be done. These are very simple in office procedures. I have to believe this would be covered by insurance. That will go a long way to confirm if this is cancerous. Many folks do have some residual hardening of muscles or tissue in the neck area after rads. It should not become larger over time but it may become more defined over time.

    In my case, there was an area that was enlarged in the rad field in the neck node area. Now a year out, that general area has gone down but there remains a more defined but smaller area of neck tissue/muscle. So in a sense it feel larger but really just more defined as the other area reduced.

    At a minimum do see the ENT and get the FNA.

    Good luck

    Don

  • hwt
    hwt Member Posts: 2,328
    donfoo said:

    fna and ent

    I'm with Ratface and P on this. If it can be felt, a FNA can be done. These are very simple in office procedures. I have to believe this would be covered by insurance. That will go a long way to confirm if this is cancerous. Many folks do have some residual hardening of muscles or tissue in the neck area after rads. It should not become larger over time but it may become more defined over time.

    In my case, there was an area that was enlarged in the rad field in the neck node area. Now a year out, that general area has gone down but there remains a more defined but smaller area of neck tissue/muscle. So in a sense it feel larger but really just more defined as the other area reduced.

    At a minimum do see the ENT and get the FNA.

    Good luck

    Don

    Ron

    I can only relate my personal experience. If not for routine scans my recurrance would have gone undetected. It was wrapped around my carotid artery and could not be felt or seen and I had no side effects. For that reason, I am a huge supporter of scans. Hard to imagine any ONC so confident in himself to not feel the need for any scans unless he spots something first.

  • joannaw81
    joannaw81 Member Posts: 183
    hwt said:

    Ron

    I can only relate my personal experience. If not for routine scans my recurrance would have gone undetected. It was wrapped around my carotid artery and could not be felt or seen and I had no side effects. For that reason, I am a huge supporter of scans. Hard to imagine any ONC so confident in himself to not feel the need for any scans unless he spots something first.

    I agree with the rest

    I think it the insurance will definitely cover this. It is better to be safe than sorry. If it's nothing it will put your mind at ease.

  • Ron Silver
    Ron Silver Member Posts: 94
    joannaw81 said:

    I agree with the rest

    I think it the insurance will definitely cover this. It is better to be safe than sorry. If it's nothing it will put your mind at ease.

    Thank you.  Reading Donfoo's

    Thank you.  Reading Donfoo's comments lessened my anxiety quite a bit.  Maybe I have nothing to worry about.

    I am in a area with a teaching hospital in the top 50 of cancer ratings etc.  However, the insurance I have will not cover anyone other than one of their providers (not at that teaching hospital).

    I looked at my calendar.  Finished treatment.  CT scan at six weeks PT.  Pulled the Peg at 12 weeks PT.  Then PET scan at 16 weeks PT.  At 45 weeks PT, scheduled my next checkup four months down the line.  The "check ups" are just looking at your open mouth and feeling your neck. I thought the first two years PT was the dicey time and you need to be followed closely.  

    The scan issue.  The radiation oncologist told me no further scans saying we examine you the "old fashioned" way before we had scans.  So no further scans.  The medical oncologist said the same thing-to them it is a nonissue.

    I think reading this forum about all the follow-up scans, scopes, and checkups, really worries me given that I am/will not be having any.  Given that I am (not anymore) a 30 pack year smoker, used alcohol, and unknown HPV status, I am letting the paranoia get to me.  

    I am going to set myself up in the future by trying to get a referral to a more experienced ENT and try to have all future checkups with that person.  Thank you for all of you insights. 

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102

    Thank you.  Reading Donfoo's

    Thank you.  Reading Donfoo's comments lessened my anxiety quite a bit.  Maybe I have nothing to worry about.

    I am in a area with a teaching hospital in the top 50 of cancer ratings etc.  However, the insurance I have will not cover anyone other than one of their providers (not at that teaching hospital).

    I looked at my calendar.  Finished treatment.  CT scan at six weeks PT.  Pulled the Peg at 12 weeks PT.  Then PET scan at 16 weeks PT.  At 45 weeks PT, scheduled my next checkup four months down the line.  The "check ups" are just looking at your open mouth and feeling your neck. I thought the first two years PT was the dicey time and you need to be followed closely.  

    The scan issue.  The radiation oncologist told me no further scans saying we examine you the "old fashioned" way before we had scans.  So no further scans.  The medical oncologist said the same thing-to them it is a nonissue.

    I think reading this forum about all the follow-up scans, scopes, and checkups, really worries me given that I am/will not be having any.  Given that I am (not anymore) a 30 pack year smoker, used alcohol, and unknown HPV status, I am letting the paranoia get to me.  

    I am going to set myself up in the future by trying to get a referral to a more experienced ENT and try to have all future checkups with that person.  Thank you for all of you insights. 

     

    ron, i also smoked for 43

    ron, i also smoked for 43 yrs, 2 pks a day.  i believe that's why i got h&nc (larync) cancer....2 times.  originally dx 8/09, recurrence 2/12/12.  rads, then surgery was tx.  like you, i'm told no scans.  my doc feels they aren't needed.  my doc doesn't even scope me.  he just feels around on my neck.  but here i am in 2014 and to the best of my knowledge, i'm still cancer free.  i've always heard the doc will see/feel the cancer faster than a scan would show it, so i just beleive that and go on living.  have you stopped smoking?  i quit for 7 months after my first dx.  then a death in family and i started again.  well, 5 months after starting again, recurrence.  i was told it would come back if i continued to smoke, it did.  i have quit forever now.  if you haven't quit yet, i pray you will be able to soon.  i know how hard it is to beat that habbit.  i still have days when i think of one or see someone and miss it.  i know that's crazy but that's how it is.  i wish you the very best.

    God bless you,

    dj

  • Ron Silver
    Ron Silver Member Posts: 94

    ron, i also smoked for 43

    ron, i also smoked for 43 yrs, 2 pks a day.  i believe that's why i got h&nc (larync) cancer....2 times.  originally dx 8/09, recurrence 2/12/12.  rads, then surgery was tx.  like you, i'm told no scans.  my doc feels they aren't needed.  my doc doesn't even scope me.  he just feels around on my neck.  but here i am in 2014 and to the best of my knowledge, i'm still cancer free.  i've always heard the doc will see/feel the cancer faster than a scan would show it, so i just beleive that and go on living.  have you stopped smoking?  i quit for 7 months after my first dx.  then a death in family and i started again.  well, 5 months after starting again, recurrence.  i was told it would come back if i continued to smoke, it did.  i have quit forever now.  if you haven't quit yet, i pray you will be able to soon.  i know how hard it is to beat that habbit.  i still have days when i think of one or see someone and miss it.  i know that's crazy but that's how it is.  i wish you the very best.

    God bless you,

    dj

    Tobacco and alcohol are long

    Tobacco and alcohol are long gone, been over a year since any of either.  Thank you for your reply.  At least I am not the only one who goes "scanless."  

  • debbiejeanne
    debbiejeanne Member Posts: 3,102

    Tobacco and alcohol are long

    Tobacco and alcohol are long gone, been over a year since any of either.  Thank you for your reply.  At least I am not the only one who goes "scanless."  

    congratulations, Ron, i know

    congratulations, Ron, i know first hand how hard that was.  you da man.....lol

    dj

  • Crazymom
    Crazymom Member Posts: 339
    scar tissue

    I had some scar tissue on a lymph node after the radiation first finished.  My lymph nodes completely disappeared after the radiation, except for one that is small.  They watched it closely the first year, but now I am two years out and the size has not changed and there have been no other recurrances.  So, they think it is just a small amount of scar tissue and said that that is common.  However, yours sounds bigger than  mine as  I cannot feel mine.   I think you should get a second opinion.   Ann

  • Ron Silver
    Ron Silver Member Posts: 94
    Crazymom said:

    scar tissue

    I had some scar tissue on a lymph node after the radiation first finished.  My lymph nodes completely disappeared after the radiation, except for one that is small.  They watched it closely the first year, but now I am two years out and the size has not changed and there have been no other recurrances.  So, they think it is just a small amount of scar tissue and said that that is common.  However, yours sounds bigger than  mine as  I cannot feel mine.   I think you should get a second opinion.   Ann

    Thanks for your comments.  

    Thanks for your comments.   Mine is, if I recall, larger (at least it seems larger), than the original tumor.  Again, if I recall correctly, it is in the same place.  Noticeable also-one side of the neck is larger-swollen it seems.  It is a large, hard, long, lump underneath my jaw line.  I am trying to get a referral to an ENT.  Thanks.