Just getting started and need info...HELP!!

Pjsmooty
Pjsmooty Member Posts: 4
in Head and Neck Cancer #1

Hey Everyone...

I've struggled with hoarseness for six years.  Over time, I've seen four ENT's without a solid diagnosis.  I've been told by most it's acidreflux and prescribed meds...no help.  I've had two endoscopoy's that showed no Barrett's or esophogus damage.  However, my ENT (2013) found, and removed, two polyps. The first biopsy (last November) revealed dysplasia.  The second biopsy (this July) revealed carcinoma in situ.  Concerned about the progression, he referred me to Vanderbilt Medical Center in Nashville.  They performed a thorough exam with video, etc on Oct 20.  The doctor showed me the photos, pointed to a spot on th base of my left vocal chord and told me, "that's cancer" and scheduled me for a "deep tissue" biopsy that I will have this Thursday.  Is this so they can "stage" the cancer?  After that (I assume) I will be referred to a radiation oncologist for treatment.  I've done some research and learned (I think) that I will have a CT scan to see where to "aim" the radiation.  Then I'll be fitted for a "mask" and start radiation therapy.  So many questions.  I have a 5" beard that I I've had for many years and really love:  will I have to shave it off or can I keep it?  If I lose my beard, can I grow it back?  Should I have PEG tube?  Again, so many questions.  Can I continue to work (truck driver and pastor of small church)?  Will I be able to speak?  Any suggestions, advice would help.  Thanks!

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Welcome Pastor

    Wow sorry to hear about all the problems but as you know our faith in God will keep us in His care no matter what trails lay ahead of us. Some people are able to work and some are not it all depends on you. I worked through both of my treatments but I was not up to a 100% it was more like 50% but my boss did not care he was just glad to see me come into work. On the beard if you get Chemo it will more than likely fall out or that is the way it was with me.

     

    There are a lot of others here with your same type of cancer so will let them explain more to you, for now Welcome to the family here on CSN H&N

     

    God Bless

    Tim

  • Pjsmooty
    Pjsmooty Member Posts: 4
    #3
    Hondo said:

    Welcome Pastor

    Wow sorry to hear about all the problems but as you know our faith in God will keep us in His care no matter what trails lay ahead of us. Some people are able to work and some are not it all depends on you. I worked through both of my treatments but I was not up to a 100% it was more like 50% but my boss did not care he was just glad to see me come into work. On the beard if you get Chemo it will more than likely fall out or that is the way it was with me.

     

    There are a lot of others here with your same type of cancer so will let them explain more to you, for now Welcome to the family here on CSN H&N

     

    God Bless

    Tim

    Thanks, Tim.  I appreciate

    Thanks, Tim.  I appreciate your encouragement.

  • swopoe
    swopoe Member Posts: 492
    #4
    Welcome

    Sorry you have to be here though. I joined last month when my husband was diagnosed with tongue cancer. I am not familiar with your type of cancer, but the people on this board are wonderful. They are so knowledgeable and provide encouragement whenever you need it. You have come to the right place. Wishing you all the best with your biopsy on Thursday.

  • Pjsmooty
    Pjsmooty Member Posts: 4
    #5
    swopoe said:

    Welcome

    Sorry you have to be here though. I joined last month when my husband was diagnosed with tongue cancer. I am not familiar with your type of cancer, but the people on this board are wonderful. They are so knowledgeable and provide encouragement whenever you need it. You have come to the right place. Wishing you all the best with your biopsy on Thursday.

    Thanks for your support and

    Thanks for your support and encouragement.  It means a lot.

  • Barbaraek
    Barbaraek Member Posts: 626
    #6
    Welcome and sorry

    that you are now a member of this club. But you have found a great place for answers, support and prayers. With so many questions, you may want to try and put a key word into the search box for messages and you can read some past responses that may address some of your questions and concerns.

    You will feel better once your docs have staged the disease and come up with a treatment plan. It always is unsettling to be in the waiting phase. Radiation is no fun, but there are ways to get through it and there are many on this forum who endured radiation (and chemo) and are now doing really well - so there is hope!

    My husband definitely lost his facial hair during radiation (and some of his hair on his head too!) but truthfully, I liked him better without his beard! The PEG tube is a more difficult question - some make it through without, others are glad they had it. I can only speak from our experience - my husband got the PEG his second week of treatment when it became too painful to swallow. Being able to do the tube feeding kept him from losing weight he couldn't afford to lose and enabled him to take his meds through the tube. It is a decision you will make in conjunction with your docs.

    Keep us posted and visit often - we'll be cheering you from the sidelines and will be sending prayers your way.

    Barbara

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
    welcome

    Pjsmooty,

    Welcome to the H&N forum, sorry for condition.

    I thought the PET was for determining all  areas of activity and CT was for sizing.

    I can still grow a beard, but without the help of any portion of my neck.

    I had 2 PEG’s , but may have been able with none, but what fun is that.

    I did some work, but mostly slept.

    I am fairly ok now and will now hit the rack.

    Sweet dreams & good luck.

    Matt

     

  • wmc
    wmc Member Posts: 1,804
    #8
    Welcome to the H&N Group

    Welcome to the group, but sorry you need to be here. Thers is many things they can do depending on size and if it is primary. There will be a team of doctors and they will decide what is best for you. Could be chemo and radiation, could be surgery and some radiation. You will most likely have a PET/CT to see all where the cancer is. Right now your beard should be your last concern, even if you love it. Most likely it will grow back, but it most likely want you clean shaven. Your main concern is to fight Cancer. This is a very rough road you are about to go down, but you can do it as so many here have already done. Mine was the size of the end of your thumb, 3cc x2.5cc and touching and blocking my left vocal cord. As far as acid reflux, please take it very serious as it can be the cause of this. There is GURD and also LPR[Larngopharyngeal Reflux] which is different and I think worse as it goes higher up and most are not aware of it. I have it. For now if the head of the bed has been rased that will help, if not do not sleep on your right side, only the left as the acid will drain down hill right to your throat. 

    Bill

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    Welcome Pj....

    ...to the club nobody wants to join.  I believe that "in situ" means that if it is cancer it is in the very early stage...or even just potentially cancerous, but not there yet.  The deep tissue biopsy will determine if there is cancer there, or not.  Biopsies aren't for staging, they're for determining if....and what kind of cancer is present.  So in this case...."it ain't cancer till the Dr. says it's cancer"!!!  GOOD!!

    You may or may not referred to anyone at this early stage....the ENT can remove it.  If you do end up with radiation, you most likely will lose that beard.  Most of the chemo's used for throat cancer don't cause much hair loss.....

    I'd say....hold tight till the biopsy comes back....and don't get out into the future too much....since this, IF it is cancer, is in the very early early...."in situ" would be earlier than Stage I.

    p 

  • kdot2003
    kdot2003 Member Posts: 143
    #10
    Hi Welcome

    Hi and welcome and sorry.   I am also new here.  This group is so hopeful and helpful.  I found mine from an enlarged lymph node.  You may have caught yours earlier.  That is awsome.  From what I know the biopsy confirms the cancer then the PET helps stage it.  In my case I had to have an panendoscopy where they biopsy a little of everything in there and a tonsillectomy because my primary hadnt been found and tonsils are notorious.  Your in the waiting stage.  I hated that so much.  SO much anxiety.  I'm in third week of treatment and I cant work.  I worked 12 hour nursing shifts.  You may be able to work part-time or an easier schedule.  You may be able to talk but might not want to.  Everyone is different.  I have a G-Tube.  I like it.  Its my safety net.  Best wishes to you.  Karen

  • avisemi
    avisemi Member Posts: 172
    #11
    You came to the right place!

    You came to the right place! Sorry you need us but glad you found us.  Many of us and/or our loved ones (like my husband) are walking, talking testimonies of God's healing.  You can do this!  The road is not easy but you are not walking it alone.  Reading old posts here will be helpful since it will give you ideas of what to expect and strategies to cope.  THOUGH, know that you most likely won't have all the side effects and issues you read about. I needed to remind myself this not too feel overwhelmed.  

    Dima lost his hair but it has grown back by now. He did get a feeding tube and we are very glad he did.  Even though he tried, he could not eat for a while and the tube kept him going.  He was on and off work. I would recommend trying to work for as long/much as you can.  I saw how this made a positive difference in Dima's treatment. He always fe,t better when he could go to work, do something useful, 'feel normal'

    we prayed Psalm 91 almost daily.  It brought us support and strength.  I hope it helps you too  

    blessings to you in this journey.  

  • Pjsmooty
    Pjsmooty Member Posts: 4
    #12
    avisemi said:

    You came to the right place!

    You came to the right place! Sorry you need us but glad you found us.  Many of us and/or our loved ones (like my husband) are walking, talking testimonies of God's healing.  You can do this!  The road is not easy but you are not walking it alone.  Reading old posts here will be helpful since it will give you ideas of what to expect and strategies to cope.  THOUGH, know that you most likely won't have all the side effects and issues you read about. I needed to remind myself this not too feel overwhelmed.  

    Dima lost his hair but it has grown back by now. He did get a feeding tube and we are very glad he did.  Even though he tried, he could not eat for a while and the tube kept him going.  He was on and off work. I would recommend trying to work for as long/much as you can.  I saw how this made a positive difference in Dima's treatment. He always fe,t better when he could go to work, do something useful, 'feel normal'

    we prayed Psalm 91 almost daily.  It brought us support and strength.  I hope it helps you too  

    blessings to you in this journey.  

    Thanks everyone...

    ...for the responses and information and support!  My original post was written from my ignorance and guessing because I do not have a clear understanding of the tests/proceedures ahead for me.  I'll have the deep tissue biopsy Thursday.  Then I'll get instruction/consultation about treatment.  The Vanderbilt specialist said, "see this...this is cancer" so I have a diagnosis.  From there I will get a treatment plan.  I assume that the doc wouldn't have made that diagnosis if she wasn't sure. Anyway, whatever is ahead, we'll deal with it.  Again, thanks for your responses!  Your input means a lot and is helpful.

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