One year and counting. .

sin9775
sin9775 Member Posts: 199 Member

Hi All.  For those of you who remember me, my brother has reached his 12 month post treatment.  He finally got his peg tube removed a couple of weeks ago. He's doing alright, I guess.  Unfortunately,  his taste has still not rebounded.  If you remember,  my brother is trusting his ENT to find any recurrences.   He has only had one scan and is dragging his feet for the one year scan.  He promised me he would get it.  My question for you tonight is, my brother has a lump on his neck and the ENT says it's from the rads and is normal -- IS IT??  It makes me so nwrvous.  Should a biopsy be done?  I assume if there is something going on with the lump that the scan will "light up".  Am I correct?  I will be so mad if there is something and the ENT did nothing.  He tells my brother,  "I am your scan."  Sounds arrogant to me.

 

Also,  has anyone heard from Cherie?  Her dad was going through treatment the same time my brother was.  I was just wondering how her dad is doing. 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    1 year

    sin9775,

    Congratulations on the 1 year!

    I would hope his ENT  is on top of things, just like I hope my ENT is.

    I had my lump surgically removed, never to return.  A scan can show many things, a direct biopsy more.  Whether your brother needs either, I do not know.

    If I had any doubts about my ENT, I would seek a second opinion.

    Nice to hear from you.

    Matt

  • sin9775
    sin9775 Member Posts: 199 Member
    CivilMatt said:

    1 year

    sin9775,

    Congratulations on the 1 year!

    I would hope his ENT  is on top of things, just like I hope my ENT is.

    I had my lump surgically removed, never to return.  A scan can show many things, a direct biopsy more.  Whether your brother needs either, I do not know.

    If I had any doubts about my ENT, I would seek a second opinion.

    Nice to hear from you.

    Matt

    Hi Matt.  Thanks for

    Hi Matt.  Thanks for responding. My brother does have faith in his ENT.  I'm just not sure that I do. So are you telling me that it is common for lumps to form from the rads?  Whose decision was it to have your lump removed?  Just to be clear, this is not his original lump, that disappeared with treatment.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hey, sin, good to hear from

    hey, sin, good to hear from you again.  congrats to your bro for 1 year, that is a BIG deal!!  about the lump, i'd get another opinion but that's me.  anything new scares the crap out of me.  i just don't like the word "lump", period.  please let us know how that comes out.

    as for Cherie, i talk with her on facebook and her dad is doing pretty good.  he still isn't eating much but other than that he is doing ok.  no problems to speak of.  i will let her know you asked about him.

    praying everything is fine with your bro.  heck, i'm gonna cross my fingers too.

    God bless,

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hi Sin.....Long time!! :)

    Whoo Hoo on your bro's one year out anniversary! 

    My ENT also tells me he would know of a recurrance first because of the monthly exam.....and it's true that if a recurrance happened in my nasopharnyx, he would see it right away.  In May, my ear got tingly, and had a feeling of pressure.  My ENT bumped my 2 year scan up from the end of August to the first of July.  The scan showed nothing, but my ENT said he had been a little worried.....so they can't can't see everything, only what they are looking for. 

    Chances are that the lump in your brother's neck is scar tissue from the rads.....but if it were my neck, I'd be wanting the reassurance of a scan. 

    p

    PS...I see Cherie on Facebook....her dad is doing very well.

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi sin

    Great news that he is a year out and doing well. On the lump I have one too, it is a leftover of the old dead tumor, and it’s been there for 12 years now. If the ENT is not too worried about you should be OK. If you want just to be sure get a second opinion from another ENT.

    Glad to see you back

    Tim Hondo

  • CherieLW
    CherieLW Member Posts: 472
    Still here!

    Hi Shawn! How are you?!  I know I have been horrible at keeping in contact these past months, but things have just been wild!  I really think about you all all the time and pray for everyone as well.  I hope that counds for something. Congrats on your brother's one year!  My dad is just past that mark too!  It's so nice to hear that your brother seems to be doing good!  Glad to hear that the peg was removed as well- dad's was just removed a few weeks ago as well!  Probably around the 22nd of July if I'm right!  I'm glad your brrother has promised to get the scans done...I know it's nerve racking, but very necessary to catch something if there is something to catch (which hopefully never happens again!).  I'll be praying that the lump is nothing to be worried about.  I know that after rads/chemo there have been changes with my dad... some that have worried me at times...

    About a month ago, we had to call 911 for my dad bc he was having pain traveling down his left arm.  THANK GOD it was nothing like a stroke/heart attack, but it really scared me... my dad got a strep infection and was in the hospital just over a week. It was a few weeks later he got the peg removed.  I'm not sure he was ready, but I was.  I kind of felt like he used that as a crutch...but then again, I can't be 100% sure.  His appetite is increasing slowly, but he still doesn't eat a whole lot.  We've started making him root beer floats and milkshakes for the extra calories and he does great with those. He has always loved ice cream (preferred chocolate, now digs vanilla).  One thing I just love is that my dad has really gotten back his sense of humor these past few months and proves to me that he's just enjoying life a little more now knowing he's still around with us :)  I thank God continously for that blessing!  I really hope that your brother and my pops get their taste back better/sooner.... It is hard to watch those we love struggle with things like eating, but I have confidence for us both that surely but slowly things will improve for them!  Everyone on here was right on with their advice when saying that everyone's different and things improve slowly.  I really hope that your brother is looking at life with a different outlook, a positive one!  Continuing to think of you and if you ever want to stay in touch I am on facebook- will pm you my info!  

     

    Thanks!! Miss you all!

     

    P.S. Thanks Debbie and Phrannie for keeping me in the loop!

  • donfoo
    donfoo Member Posts: 1,771 Member
    HI!

    Glad both Shawn and Cherie checking in at one year mark. Always great to hear good status. Sounds like your brother trusts his ENT so it makes sense he listens to his advice. It sounds like you are not sure about this ENT. In that case getting a second opinion from a different ENT may soothe your concerns but not add comfort for him. Ask if he is open to seeking an alternate opinion on the scan results and the lump. With cancer you never know with 100% certaintly the beast is dead until some years pass unfortunately.

    Glad you both came by to say HI!

  • CherieLW
    CherieLW Member Posts: 472
    donfoo said:

    HI!

    Glad both Shawn and Cherie checking in at one year mark. Always great to hear good status. Sounds like your brother trusts his ENT so it makes sense he listens to his advice. It sounds like you are not sure about this ENT. In that case getting a second opinion from a different ENT may soothe your concerns but not add comfort for him. Ask if he is open to seeking an alternate opinion on the scan results and the lump. With cancer you never know with 100% certaintly the beast is dead until some years pass unfortunately.

    Glad you both came by to say HI!

    :)

    :)