H&N Cancer, not Esophagus Cancer. Late, not early

lornal
lornal Member Posts: 428
in Head and Neck Cancer #1
Saw the surgeon today.  He looked at the PET scan, and its not good.  It is head/neck cancer and it extends into the esophagus.  More tests are needed to see if is operable.  That should be Monday.   If it is, he will remove the esophagus, the voice box, and put in a trachea.  If not operable, then chemo.  Prob not radiation, because it would be in the same place as it would before, and they usually don’t do that.

 

Really don’t know more - it needs to sink in still.

 

Will be getting a second opinion. 

 

Lorna

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    T&P

    Lorna,

    We did not want to hear that.

    Good thoughts and prayers for a better second opinion.  I am still hoping for good results.

    Best always,

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    This is the pits....

    I do think a second opinion is in order for sure.....especially with what we've been hearing about SBRT, and a couple of the other newer innovations with radiation.  Both Bev (KTeacher) and Candi (hwt) have had the newer stuff....with good results.  I'm tucking you into my pocket and sending a ton of prayers and positive thoughts.

    p

  • donfoo
    donfoo Member Posts: 1,773 Member
    #4
    don't rule out rads

    There are a number of folks who have had multiple rounds of rads, maybe not so many here but check at OCF. There are some active folks who have been through it many times and can guide you along. Best of luck. Don

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    lorna, so sorry to hear

    lorna, so sorry to hear that.  keeping you in my thots and prayers.  keep us posted.

    God bless you,

    dj

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #6
    H&N Cancer

    Yes a second round of radiation can be done but problems can be worse (like your cartoid artery could burst).  My husband had his first round or radiation for laryngeal cancer starting in August 2010 and his second round starting in May 2012 (in almost the same area as the first round of radiation)  when a tumor was found at the cervical of his esophagus and surgery was ruled out due to previous radiation and his laryngectomy in March 2011.   I can say the second go round wasn't as bad as the first for him.  But sadly it didn't stop the cancer from returning and spreading to his right lung.  He declined further treatment.  Only thing offered was chemo and much stronger than what he had the first two times.  Due to his age (76) and weight his doctors didn't try to talk him into taking the chemo.  Today it has been almost a year since we found out.  Pain is increasing, very low energy levels and can't swallow but a few slips of coffee in the morning.   He has a PEG tube for feedings.

    If you aren't seeing a head and neck specialist, see one.  Cancer at the cervical of the esophagus is considered head and neck cancer.  We were referred to one in February 2011 when we found out that the radiation and chemo didn't work and that my husband needed a laryngectomy.  Our local ENT said that a head and neck specialist was who we needed for the surgery because they are trained to do so much more during surgery if needed which for my husband was.   

    Wishing you the best -- Sharon

     

  • katenorwood
    katenorwood Member Posts: 1,912
    #7
    Hello Lorna

    I'm so sorry about your recent news.  Yes take some time to absorb this news.  And then put the gloves back on, and pull some people in on helping you make the wisest choice that best suits your dx.  You said this was a H/N dx, but what type ?  And is there a specialist that has dealt with this type where your doctoring ?  If not ask to be referred to one.  They are throwing alot at you without giving you specifics.  (maybe they have and I'm saying what you already know)  We are here for you.  Please let us know what direction you decide to go.  Hugs sent !  Katie 

  • lornal
    lornal Member Posts: 428
    #8
    ENT

    The doctor I am seeing is the ENT Oncologist.  The right guy for st. louis.

    I talked to my husband about getting a second at MD Anderson.  A long way from home, so we need to see how we can swing this financially.  Getting the second there shouldn't be too bad, but treatment there (at least the surgery) will be a bit tougher.    I have a almost 17 year-old son at home.  

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    lornal said:

    ENT

    The doctor I am seeing is the ENT Oncologist.  The right guy for st. louis.

    I talked to my husband about getting a second at MD Anderson.  A long way from home, so we need to see how we can swing this financially.  Getting the second there shouldn't be too bad, but treatment there (at least the surgery) will be a bit tougher.    I have a almost 17 year-old son at home.  

    Lorna

    So very sorry to hear the news was not better than expected. As I read your post, I hear my brother telling me that he told his Oncologist at Mayo about me. The ONC  said "don't let anyone tell her that you can't be radiated twice."  Now, here I am looking down the road at a 3rd go round of radiation to target another spot. With my SBRT at Mayo, it took 5 days and I had virtually no side effects.  When I investigated MD Anderson for proton therapy, I got copies of all my scans and records and sent them Fed Ex beforehand to see if they felt proton therapy was an option or if they had anything else to offer. They reviewed it and called me to say they yes before I made a trip to Houston.  Once at Mayo, they consulted with MD Anderson to determine the best option for me. Sadly, I know that taking in the news, scheduling appts. here and trying to seek out other options at the same time, managing emotions and being strong for family is all so overwhelming. I encourage a second opinion, even if done locally. I have found that hope can take you far. 

    Sending prayers and hugs.

    Candi

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