Please read... May save your life

Pclark21st
Pclark21st Member Posts: 126
in Head and Neck Cancer #1

So,  we all periodically get CTs.  We went into our 9 mos, feeling great to see RO and MO.   All the radiation technicians,  the nutritionist, many of the nurses and office staff came up to us to tell us how great he looked.   You could see him floating.  Backstory...stage IV right tonsil cancer, given 2 to 3 days to live ...had emergency trachestostomy, feeding tube, 40 rads, 3 Cisplatins.   No one really thought he'd rid himself of the devices, but he fought hard, now all gone.  Back to present...9 mos CT.  He asked to have them scan upper chest area, as well as neck/throat as scheduled.  MO Saw activity, asked for PET, and be seen by thoracic surgeon in 2 weeks. MO thought maybe thymus issue...thoracic initital thought scarring from trach... biopsy needed, growth in 6 months 3 x 5 x 12 cms equals 1 x 2 x 4 inches...not subtle, per surgeon.  Because of location,  will need biopsy through armpit, deflate right lung, move out of the way, avoid aorta and vena cava...take nibbles to get determination.  Surgeon says 90+% that it's tonsil cancer moved to this area.  If yes,  rads and chemo... again.  Surgeon sd wants biopsy and treatment plan in less than 2 weeks.  Right now we're not worrying until we're told to.   But,  we've seen and felt this sense of urgency before.  Moral of the story,  when getting routine cts, ask to have upper chest scanned too.  If we didn't  this would have gone unnoticed until maybe way worse... or too late . Sigh

Comments

  • swopoe
    swopoe Member Posts: 492
    #2
    Oh no. I hope it is nothing

    Oh no. I hope it is nothing though. But this is a good reminder. Whenever my husband gets a follow up CT he also gets one of the chest too. It is standard procedure. He had tongue cancer. Keeping you in my thoughts.

  • caregiver wife
    caregiver wife Member Posts: 234
    #3
    CT scans

    Wishing you both the best.  Very good advice.  Husband's scans always included chest and pelvis.  Successfully treated for mets to lung and liver.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #4
    Sorry to hear You Folks

    Are dealing with a possible cancer situation again but glad you found it sooner than later and can deal with it and thanks for the reminder on the chest scan.

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    Chest CT for H & N

    I remember reading somewhere that HPV + head and neck cancers can show up later in the chest/lung area, sometime even after the usual time frame typically given for the all clear. Your warning is well advised. With regards to HPV+ cancers of the head and neck, we’re still learning lots.

    Barbaraek

  • Hygienist97
    Hygienist97 Member Posts: 13
    #6
    Ct of chest

    I read this comment back in February and at my husbands latest CT scan requested a chest X-ray as well. They stated he has more Thymic tissue than usually seen in a 48 year old so , they will rescan in 4-6 months but the RO didn’t seem to worried about it? I was wondering what ever happened  with your situation , what did they find and how are things going? My husband had tonsil cancer diagnosis November 2017.

  • Pclark21st
    Pclark21st Member Posts: 126
    #7
    Hygienist97...its been a ride

    Hygienist97...its been a ride.  First they thought it was met to mediastinum.  Gave him less than z yr with no treatment and maybe 5 with.  He was sent to Dana Farber for 2nd opinion and slated for 10 SBRTs, no chemo.  Then Dana Farber, after receiving all records from BID, feels strongly that it is actually a local recurrence of original tumor that a few cells, too small to detect, were hidden under the  original radiation field.  Since he did so great with original, they feel strongly that he will do the same with the same treatment plan of 6 weeks rad and 6 cisplatin.  But before he could start he had fluid accumulating around lungs which caused delay in mapping 2x.  Finally have a chest drain tube.  We drain everyday before radiation now.  Already fluid drying up.  We're hopeful once again.  

  • Logan51
    Logan51 Member Posts: 468 Member
    #8
    Sounds positive

    Says a lot about Dana Farber, I reckon. Hope restored, and you have my best wishes for success.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #9
    Pclark21st said:

    Hygienist97...its been a ride

    Hygienist97...its been a ride.  First they thought it was met to mediastinum.  Gave him less than z yr with no treatment and maybe 5 with.  He was sent to Dana Farber for 2nd opinion and slated for 10 SBRTs, no chemo.  Then Dana Farber, after receiving all records from BID, feels strongly that it is actually a local recurrence of original tumor that a few cells, too small to detect, were hidden under the  original radiation field.  Since he did so great with original, they feel strongly that he will do the same with the same treatment plan of 6 weeks rad and 6 cisplatin.  But before he could start he had fluid accumulating around lungs which caused delay in mapping 2x.  Finally have a chest drain tube.  We drain everyday before radiation now.  Already fluid drying up.  We're hopeful once again.  

    Pclark21st God Bless-that's wonderful

    So happy for you. Glad you got sent to Dana Farber and everything's falling in place and you have good hope. That's why it is said many times on here "Never Ever Give Up."

  • Hygienist97
    Hygienist97 Member Posts: 13
    #10
    Glad to hear

    Glad to hear that they think they can get the local recurrence under control, sounds like he is in good hands.

  • mberneathy
    mberneathy Member Posts: 1
    #11
    Unsure of Doctor

    I was diagnoised with thyroid cancer over two months ago, but I do not have a surgery date until May 20th, which I think is way too long.  This doctor has seen me only one time, no follow up appointment, just  surgery date.  She did send me to an endroconologist, which really helped me.  She has ordered a cat scan of the neck.  She looked at my earlier ultra sound, and told me that it was growing very fast!!  My surgeon has not bothered to even have a follow up appointment with me.  I am looking for another doctor, any suggestions of what kind?

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #12
    mberneathy said:

    Unsure of Doctor

    I was diagnoised with thyroid cancer over two months ago, but I do not have a surgery date until May 20th, which I think is way too long.  This doctor has seen me only one time, no follow up appointment, just  surgery date.  She did send me to an endroconologist, which really helped me.  She has ordered a cat scan of the neck.  She looked at my earlier ultra sound, and told me that it was growing very fast!!  My surgeon has not bothered to even have a follow up appointment with me.  I am looking for another doctor, any suggestions of what kind?

    I can tell

    You are very apprehensive and unsure. With this, you want to be comfortable with your doctor and a reasonable timetable to get it resolved and you want information. I would go talk to your doctor and let her know what you want and what you are uncomfortable about and that you would like a little more communication and assurance. If you don't get a positive response to your liking I would recommend you find a good ENT to check you out. I have a very good one and he keeps a close watch on me. Don't fool around with it if you feel you need a second opinion don't hesitate to get it. God Bless

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