1st post fear with upcoming pet

laurabeau
laurabeau Member Posts: 40
in Head and Neck Cancer #1

Three years ago my husband had swollen glands on the left side of his neck.  A trip to our family physician resulted in a week of antiobiotic which did nothing.  He was then referred to a local ENT. A biopsy was done whitch were inconclusive. Then surgery was done to biopsy.  Area and some surrounding tissue proved to be do squamous cell cancer to the neck muscle.  We then went to another specialist who performed more surgery and again got clear margins.  a year later a snall knot came up on the scar line on the left side of the neck.  All the while nothing revealed in pet scans after surgery.  Two separate treatments of radiations to the sprcific areas and with the some light chemo align with radiation.  Almost a year to date pet revealed spot on the left tonsil.  Left totaken removed and margins were not clear due to depth of cancer.  We then traveled to Tx. Treatment of 3 heavy duty drugs, finished that and started on erbitux with 37 treatments to the throat area of radiation that had not been targeted before. Since then. Cat scan was clear and next is Pet 1st of May.  He has lost over 80 lbs. total since onset no problem with was wallowing except lack oif saliva and since end of January (when treatments ended) things still taste bad. Drinking ensure, lots of water , oatmeal and one dinner meal of a few bites of solid foods.  He did test positive for HPV and they feel source was tonsil all along. Nervous about upcoming PET. 

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    Prayers

    Prayers coming your way for your husband to have a clean scan.

  • Sunshine60
    Sunshine60 Member Posts: 81
    #3
    Good thoughts

    Prayers and positive thoughts coming your way for a clear PET scan! Breathe!

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #4
    Seems Good

    Sounds like they got it and scan should be great.  Totally understand fear of scan, fear and hope in same instant.  Got that myself.  Best on the scan and am in your corner.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    scanxiety

    Laurabeau,

    Welcome to the H&N forum.

    You have both been put through the wringer.  Let’s hope that is over and a clean scan is ahead.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Scans provoke the nerves of all of us...

    you are not alone in that!!  Sending big positive thoughts and juju....and lots of prayers.....he's been through a lot, and I'll put my money on a clear scan....

    p

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Feeling Good...

    Welcome Laura,

    Since the final treatment plan was quite similar to mine, and I also had STGIII Toncil Cancer (right side), HPV+.

    I had the toncils removed, three big doses of chemo, then another seven weeks concurrent chemo and 35 daily rads... I've been clean and clear going on four years now.

    Since they finally hit on a treatment plan close to mine... I feel good that they got it right, LOL.

    Thoughts and Prayers,

    John

  • Billie67
    Billie67 Member Posts: 898
    #8
    Skiffin16 said:

    Feeling Good...

    Welcome Laura,

    Since the final treatment plan was quite similar to mine, and I also had STGIII Toncil Cancer (right side), HPV+.

    I had the toncils removed, three big doses of chemo, then another seven weeks concurrent chemo and 35 daily rads... I've been clean and clear going on four years now.

    Since they finally hit on a treatment plan close to mine... I feel good that they got it right, LOL.

    Thoughts and Prayers,

    John

    Welcome Laura
    I know this whole scan thing is so nerve-racking. Your hubby has had a real go of it and I know that while the treatment was tough it's also very effective. I look forward to hearing back from you with those great NED results. I just had my 9 month scans and let me tell you that I was just as nervous this time as I was with my 3 month scans. I guess it's normal for us :-)

    Take care,
    Billie
  • katenorwood
    katenorwood Member Posts: 1,912
    #9
    positives sent !

    I can't add much to the above, except we all still continue to experience the jitters when going in for the scans.  I'm adding my prayers to yours for a good outcome (all clear).  Katie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    saying a prayer 4 a NED

    saying a prayer 4 a NED scan.   Cool

    God bless,

    dj

  • cureitall66
    cureitall66 Member Posts: 913
    #11
    Positive thoughts.....

    Welcome and sorry to hear of the road that you both have traveled. Keeping positive thoughts for his PET coming up that it is NED!!Laughing

    ~C

  • laurabeau
    laurabeau Member Posts: 40
    #12
    Strength in Numbers

    Finally, a wonderful group of people that get how we feel.  I question myself that if I truly give it to God , then why a case of the nerves?  I guess it is a normal.  What I didn't write in my 1st post was that when we were waiting on that first biopsy we had to fly to New York for our grandaugghter's 2nd open heart surgery. It was successful I am proud to say and she will turn 4 in June.  This last recurrence of cancer and treatment, I received my walking papers at work the day before my husband had hhair most difficult chemo.  I could write a book.  

    God Bless each and everyone of you for your e warm wishes, prayers and encouragement

  • yensid683
    yensid683 Member Posts: 349
    #13
    It's normal to be afraid

    of what that first post treatment scan may reveal, but do your best to stay positive for yourself and your husband.  Dwelling on the 'what if' does you no real good.  As so many have said here "it's not cancer until they say it is".  Be prepared for some hot spots, healing tissue will pick up the FRG molecule as readily as tumor tissue will.

    I had a post treatment PET in October that was called 'great' with a small hot spot considered to be scar tissue.  The extent of the original disease was such that the tumor board recommended surgery which went well.

    My second post treatment scan showed more areas of concern that turned out to ALL be scar tissue.  Of course they didn't determine that until they went through pathology after another surgery.

    Keep a positive though, sending you prayers, hugs and space in a caring pocket

  • laurabeau
    laurabeau Member Posts: 40
    #14
    Skiffin16 said:

    Feeling Good...

    Welcome Laura,

    Since the final treatment plan was quite similar to mine, and I also had STGIII Toncil Cancer (right side), HPV+.

    I had the toncils removed, three big doses of chemo, then another seven weeks concurrent chemo and 35 daily rads... I've been clean and clear going on four years now.

    Since they finally hit on a treatment plan close to mine... I feel good that they got it right, LOL.

    Thoughts and Prayers,

    John

    Taste , dry mouth and weight loss

    John, my husband as lost almost 90 lbs. in the past year.  He has no swallowing issues but due to foods tasting awful and loss of saliva , he gets most of his calories from boost +.  How long before your taste to get back to somewhat normaL? I will add that his energy level is good and he did need to lose some weight.  (Size 44 waist to 36) 

    Laura

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
    laurabeau said:

    Taste , dry mouth and weight loss

    John, my husband as lost almost 90 lbs. in the past year.  He has no swallowing issues but due to foods tasting awful and loss of saliva , he gets most of his calories from boost +.  How long before your taste to get back to somewhat normaL? I will add that his energy level is good and he did need to lose some weight.  (Size 44 waist to 36) 

    Laura

    For Me..

    Taste started back within a month or two..., no where near normal, but within six months I could definitely survive on what I did have. It was pretty much a work in prgoress for nearly two years before coming totally back.

    But again, we are each different...

    I too pretty much survived only on Ensure Plus for two months... But that was mainly because it offered many more calories than I could have gotten from eating solid food.

    He just has to realize, we aren't eating for enjoyment, we are taking in calories for survival, healing and recovery...strength to continue the battle...

     Best

    John

  • laurabeau
    laurabeau Member Posts: 40
    #16
    Skiffin16 said:

    For Me..

    Taste started back within a month or two..., no where near normal, but within six months I could definitely survive on what I did have. It was pretty much a work in prgoress for nearly two years before coming totally back.

    But again, we are each different...

    I too pretty much survived only on Ensure Plus for two months... But that was mainly because it offered many more calories than I could have gotten from eating solid food.

    He just has to realize, we aren't eating for enjoyment, we are taking in calories for survival, healing and recovery...strength to continue the battle...

     Best

    John

    Taste

    John, thanks so much for your info.  My husband has basically survived on ensure as well. He picked up the caloric intake when I told him he could die of malnutrition as well as Cancer!.  Eating is a job at this point and he is slowly learning that.  

    Thank you again for providing "a light at the end of this tunnel."  Hope you have many  healthy years ahead!

    Laura

     

     

  • NJShore
    NJShore Member Posts: 429 Member
    #17
    Laura

    Laura,

    I will be saying a prayer for you and your husband tomorrow! And for the days until you get those results that you too will see NED very soon.

    You've all put up a great fight, it's my hopes that you've won your battle.

    We just my husbands (also left tonsil, stg4) first post tx pet scan a few weeks ago, they are the most nerve racking events.. try hard to distract yourselves.. hard to do, but it does help!

    Keep us posted, you aren't alone.

    Kari

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #18
    Best on Scan and Taste - It Does Get Better

    Still struggling with taste, four and a half months out of treatment.  Taste is slowly coming back, i would say about 30% or a little more now.  Eating almost all solid food, just keep trying different things to see what I can eat and sort of like.

    Scans and any little issue brings up what if the cancer is back fear.  Likely will never go totally away.  Part of my new life.  I wish you the very best adn a prayer for a clean scan.

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #19
    Best on Scan and Taste - It Does Get Better

    Still struggling with taste, four and a half months out of treatment.  Taste is slowly coming back, i would say about 30% or a little more now.  Eating almost all solid food, just keep trying different things to see what I can eat and sort of like.

    Scans and any little issue brings up what if the cancer is back fear.  Likely will never go totally away.  Part of my new life.  I wish you the very best adn a prayer for a clean scan.

  • laurabeau
    laurabeau Member Posts: 40
    #20
    HobbsDoggy said:

    Best on Scan and Taste - It Does Get Better

    Still struggling with taste, four and a half months out of treatment.  Taste is slowly coming back, i would say about 30% or a little more now.  Eating almost all solid food, just keep trying different things to see what I can eat and sort of like.

    Scans and any little issue brings up what if the cancer is back fear.  Likely will never go totally away.  Part of my new life.  I wish you the very best adn a prayer for a clean scan.

    Taste

    Well, It us good to here taste will come back eventually.  Things taste really sweet now or just plain nasty but st hat is a start.  Thanks for your comments.  We are waiting for the PET now.  Keeping it to myself, but I am a small bundle of nerves.  Husband not feeling well today and no food for 1/2 the day doesn't help. 

    Laura

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