new to it all

mokus
mokus Member Posts: 63 Member
edited July 2015 in Head and Neck Cancer #1

Hello, everyone.  I was just diagnosed with cancer in my neck.  Details still sketchy but four biopsy samples of my left side neck all positive.  I am now waiting to hear from VA about scheduling whatever is to come.  They said I will need a trach tube and feeding tube for the duration of treatment but both will be removed when treatment is complete.   Thinking about these 2 tubes has me more stressed out than the chemo/radiation.  I have a mass in my throat that is interferring with function of epiglottis.  I am super concerned about hydration during the process since I will  be unable to "drink" fluids. In the months leading up to my diagnosis I lost 80 pounds (256 to175(today)).

 

 I am 59 years old, male, and more afraid of this(naturally) than anything I have experienced in my life, including my 11 years in the military.  I am already on SSDI for PTSD, severe social anxiety issues, Aspergers Syndrome and bipolar with personality disorders.  Luckily I live with a sister who has had some experience as a home heath aid taking care of a patient with these 2 tubes albeit many years ago.

 

I will share more as things develop.  Right now, even the process of posting here is draining me, physically and emotionally.

 

Thank you all so much for being here.

Comments

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Tubes

    don't be scared by the tubes, they are lifesavers and temporally. The PEG tube is great you can get all your nutrients and water and medication without effort. It's not uncomfortable and you soon get used to it. I'm coming to the end of using my PEG as I'm maintaining my weight by taking my food through my mouth but I'm reluctant to have it removed after two years it's become part of my routine. It's my safety line but I no longer need it. I had it two years because I got a stricture from radiotherapy (very rare) and couldn't swallow. It's been fixed now. If my weight stays the same another month it has to come out. The trach is ok too but can get clogged with mucus and a nurse will 'vacumm' it out nothing to get scared of.it doesn't stay in too long. I'm going by my experience and not sure what procedures your having. All this is doable and you come out the other side feeling stronger. If you have the usual six weeks rads the six weeks go quite fast. There is some side affects but each person is different. I was lucky as I didn't get mouth ulcers. I wish you luck and keep posting any problems we all help each other with moral support.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome...

    Haven't heard of many having to get a trach up front, but I'm sure others will chime in..

    Just come to terms and get in your battle gear. Positive attitude and thinking are huge.. At some point most everyone here has been where you are right now.., we survived and so will you.

    It's not easy, and at time damn tough.. You just get into the routine of surviving one day at a time sometimes.., but you'll make it.

    I was Dx as STGIII SCC Toncils, lymphnode and HPV+.. Four types of chemo, 35 days of rads over sixteen weeks..., and I survived..

    Not only that, but that was over six years ago.., and I've been clean and clear since.. Actually given the all clear from my MD's last year.., Complete Remission...

    Hang tough, draw on your military toughness, and kick butt..

    John

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

    I too would like to welcome you to the family here on CSN H&N.

    For now all you can do is to wait and see what the doctors say, there are a lot more new things now being done to help those of us who have head & neck cancer. I know it is hard to wait and not worry but start focusing on getting through this and let us know what your team is planning. If you don’t mind I would like to add you to my prayer list if that’s ok.

     

    Tim

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

    Welcome to the group, and I'm sorry you need to be here. I have thought long and hard as what is the best wat to welcome, and answer your concerns and decided to just lay in on the line and not sugar coat it. It is very scary when you are told you have cancer. Then the say chemo and radiation. Then they say you will get a trach and a feeding tube. The reason for the trach is where the tumor is and it is blocking your epiglottis from working right and that is why you are getting asperating pneumonia, which is very dangerous. I'm not a doctor, but this is what I had as well. My thmor was below the epiglottis and blocking my vocal cords. I also had severe COPD and could not make it through the surgery or radiation because of that. You have lost lots of weight and are concerned, the feeding tube is how you will get liquids and your food in liquid form. Having the trach is really not that bad as it will allow you to breath while you heal and they said it will come out. In my case they had to remove my larynx [vocal cords] and I have a perminate trach which is called a stoma. I can only breath through my neck. When you go back please have some one go with you and also write your questions down and leave room to write the answers. Just hand it to the doctor and he will answer each one you do have.

    Going through chemo and radiation is very rough road to go down, but many of us have been down it and will be here to answer questions and for support. Please know you are not alone in this as so many here will be here to help. I'll keep you in my thoughts and prayers.
    P.S. Thank you for your service for your country and for all of us as well. God Bless.

    Bill

  • mokus
    mokus Member Posts: 63 Member

    Tubes

    don't be scared by the tubes, they are lifesavers and temporally. The PEG tube is great you can get all your nutrients and water and medication without effort. It's not uncomfortable and you soon get used to it. I'm coming to the end of using my PEG as I'm maintaining my weight by taking my food through my mouth but I'm reluctant to have it removed after two years it's become part of my routine. It's my safety line but I no longer need it. I had it two years because I got a stricture from radiotherapy (very rare) and couldn't swallow. It's been fixed now. If my weight stays the same another month it has to come out. The trach is ok too but can get clogged with mucus and a nurse will 'vacumm' it out nothing to get scared of.it doesn't stay in too long. I'm going by my experience and not sure what procedures your having. All this is doable and you come out the other side feeling stronger. If you have the usual six weeks rads the six weeks go quite fast. There is some side affects but each person is different. I was lucky as I didn't get mouth ulcers. I wish you luck and keep posting any problems we all help each other with moral support.

    tubes

    Thank you for the informative, encouraging and supportive comment.  One more thing, about swallowing.. How do I swallow if there is no liquid or saliva in my mouth.    Right now there is a small mass interferring with function of my epiglottis, hence the trach tube.  I guess I will recieve training in all of this before things get rolling, but I obssess over things easily.  Thanks for your help

  • mokus
    mokus Member Posts: 63 Member
    Skiffin16 said:

    Welcome...

    Haven't heard of many having to get a trach up front, but I'm sure others will chime in..

    Just come to terms and get in your battle gear. Positive attitude and thinking are huge.. At some point most everyone here has been where you are right now.., we survived and so will you.

    It's not easy, and at time damn tough.. You just get into the routine of surviving one day at a time sometimes.., but you'll make it.

    I was Dx as STGIII SCC Toncils, lymphnode and HPV+.. Four types of chemo, 35 days of rads over sixteen weeks..., and I survived..

    Not only that, but that was over six years ago.., and I've been clean and clear since.. Actually given the all clear from my MD's last year.., Complete Remission...

    Hang tough, draw on your military toughness, and kick butt..

    John

    welcome

    Thank you for your help and information.  I'm glad you have done so well with your treatments. I am inspired and motivated by all of the people on this site and all of your personal stories.

  • mokus
    mokus Member Posts: 63 Member
    Hondo said:

    Hi Mokus

    I too would like to welcome you to the family here on CSN H&N.

    For now all you can do is to wait and see what the doctors say, there are a lot more new things now being done to help those of us who have head & neck cancer. I know it is hard to wait and not worry but start focusing on getting through this and let us know what your team is planning. If you don’t mind I would like to add you to my prayer list if that’s ok.

     

    Tim

    hi mokus

    thank you for your encouragment and prayers.  I am going to need all the help and support I can muster.

  • mokus
    mokus Member Posts: 63 Member
    wmc said:

    Welcome to the H&N Group

    Welcome to the group, and I'm sorry you need to be here. I have thought long and hard as what is the best wat to welcome, and answer your concerns and decided to just lay in on the line and not sugar coat it. It is very scary when you are told you have cancer. Then the say chemo and radiation. Then they say you will get a trach and a feeding tube. The reason for the trach is where the tumor is and it is blocking your epiglottis from working right and that is why you are getting asperating pneumonia, which is very dangerous. I'm not a doctor, but this is what I had as well. My thmor was below the epiglottis and blocking my vocal cords. I also had severe COPD and could not make it through the surgery or radiation because of that. You have lost lots of weight and are concerned, the feeding tube is how you will get liquids and your food in liquid form. Having the trach is really not that bad as it will allow you to breath while you heal and they said it will come out. In my case they had to remove my larynx [vocal cords] and I have a perminate trach which is called a stoma. I can only breath through my neck. When you go back please have some one go with you and also write your questions down and leave room to write the answers. Just hand it to the doctor and he will answer each one you do have.

    Going through chemo and radiation is very rough road to go down, but many of us have been down it and will be here to answer questions and for support. Please know you are not alone in this as so many here will be here to help. I'll keep you in my thoughts and prayers.
    P.S. Thank you for your service for your country and for all of us as well. God Bless.

    Bill

    Welcome to the H&N Group.

      Thanks for the welcome and encouraging words. My sister will be going with me.  She is very good about taking care of health information for the family and being a bridge with our respective doctors.  I guess the VA is in the process of communicating with the civilian hospitl which we be taking care of the tube placements and coordinating medications and adverse affect possibilities with my kidney doctor and my primary care.  After all of the support and information I have recieved on this site already I am anxious to get the battle started.

     

    Thank you.

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    Peg and Trach

    mokus,

    I am sorry to read that you have joined the club that no one wants to belong to. As mentioned by the others above, we have walked this path and can guide you along.

    I had Base of Tongue cancer which required surgery. I woke up with a Peg Tube, Trach, Radical neck disection with drain tubes and part of my tongue gone.

    I had the Trach as it helped me breathe as I had alot of swelling from the surgery, the Surgeon didn't want me choking. The Nurses cleaned the Trach while I was in the Hospital the first day, the 2nd day I asked them to show me how to do it so I could do it on my own. It is not hard, you can do this as well as the PEG Tube.

    I am glad to hear you have the support of your sister.

    My Best to You and Everyone Here

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    mokus, i'm so sorry you're

    mokus, i'm so sorry you're facing so much.  its is great that you have a sister who can help you through all this.  i pray the doctors will have a plan of tx for you soon.  the sooner it starts, the sooner its over.  we will be here cheering you on.  we look forward to celebrating you "ringing the bell".  hang tough, you will get through this.

    God bless you,

    dj