New to board

denise417
denise417 Member Posts: 32
edited March 2014 in Head and Neck Cancer #1
Hi, my name is Denise and I am new to this board. I have throat cancer. On the vocal cords. Two weeks ago when they did the biospy, they put in a trach for fear my throat my close. It did not, but now I have the trach. My results were a rare cancer, long name, but I understand it is considered T3, everything else a 0, if anyone understands that. Because the cancer was so rare in the throat, a second opinion was needed. I went to U of M and the results were the same, except they say the vocal cords move, which changes the stage number. They will be leaving the trach there until after the radiation treatments have started. At first it was to only be radation treatments, but now because of the type of cancer, I will have chemo also. I have an appt this next week to get things started, so I am really new to all this. They want to give me a gastrastomy ? If that is correct. Which I have no idea what this is or what it does. Other than I will get food thru this. As I suffer from low weight, this is not a option for me, I guess. I am reading on here about a PEG? What is that? I am 57 years old, had breast cancer 10 yras ago, but had surgery and all has been well since than. I have read all I can get my hands on but as you can see, I still have no idea. Dr's so far have said very little, other than this is the treatment and it is curable. I suppose this next week I will learn more. Just wish I had more idea of what to expect ahead of time. Reading thru here has helped alot. For that I thank everyone for being here and sharing. This helps alot already. Any information that you can share with me would be greatly appreciated. Thanks, deise

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi denise


    First welcome here to CSN and to our family. I am NPC so I can’t help much with throat cancer but there are a lot of others here who will. At first it is very frightening but as you learn more it will help you to better understand what you will be going through. I hope you plan to stay and keep posting through your treatment as you will find a lot of helpful hits to what other are doing and have ben through themselves.

    All the best to you
  • Scambuster
    Scambuster Member Posts: 973
    #3
    Hi Denise
    Welcome to our group, sorry you had to be here but you have a found a good place for support and advice.

    A few things which may help are 1. Get and always carry a diary / note pad with you to take down notes and write down questions you think about as your mind will be in overdrive and the amount of information you are trying to process is a lot. You can later use it to log in medications etc. Get into the habit of using your Diary/Notepad.

    2. The treatments for H & N (Head & Next) Cancers are normally one or any combination of Surgery, Radiation and Chemo. Because yours is in or around the V. Chords, it's a tough one for surgery hence you are being advised to get Rads and Chemo. If you can have IMRT (Intensity Modulated radiotherapy) they say it is the best form or Radiation. Your Chemo could be a combination of the many drugs available, each with it's own side effects and regime of administration. Some take an hour a week, other several hours, a few times a week. When you find out which ones, post here and the gang will tell you their experiences.

    3. The PEG is a very good idea and while a nuisance, it is no big deal for a few months to help keep your weight on. It is a simple procedure to put in, where they put a lighted Endoscope down into your tummy and when they get to your Stomach, they get the right place and the light can be seen from the outside and a second Doctor will insert a small tube usually an inch or two above your navel. Your will have about 4" - 6" of tube sticking out with a set of simple clips. THis allows you to introduce food directly into your stomach. It's easy and effective and usually temporary as your throat will be a bit sore while you are getting Rads till a month or so after. you just need to clean the entrance point daily and replace a small dressing around the tube. Al easy.

    4. We all react differently to the treatment, some walk it in, others get very sick with pain and nausea. The first 3 weeks are usually OK then it might get rough but we all got through it and so will you.

    That's enough for now from me. Post whenever and let the gang help you through. Report whatever your Doctors say as many here can then share their experience and advice.

    Stay positive.
    Scambuster
  • Fire34
    Fire34 Member Posts: 365
    #4
    Denise
    You have definetly come to the right place. I wish I had known about this forum while I was going thru treatment. Just to kow what to expect. As Scam mentioned the PEG is no big deal, I believe it helped me lose less weight than I did.
    You might also have to have a port put in, which is a device placed just below the skin in the shoulder area connect to a vein in your shoulder. Mine was a dual port, most here were power ports, they could have their CTs and chemo thru them.
    Please let us know how things progress and keep in touch
    Best Wishes & Prayers on your treatment
    Dave
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #5
    Scambuster said:

    Hi Denise
    Welcome to our group, sorry you had to be here but you have a found a good place for support and advice.

    A few things which may help are 1. Get and always carry a diary / note pad with you to take down notes and write down questions you think about as your mind will be in overdrive and the amount of information you are trying to process is a lot. You can later use it to log in medications etc. Get into the habit of using your Diary/Notepad.

    2. The treatments for H & N (Head & Next) Cancers are normally one or any combination of Surgery, Radiation and Chemo. Because yours is in or around the V. Chords, it's a tough one for surgery hence you are being advised to get Rads and Chemo. If you can have IMRT (Intensity Modulated radiotherapy) they say it is the best form or Radiation. Your Chemo could be a combination of the many drugs available, each with it's own side effects and regime of administration. Some take an hour a week, other several hours, a few times a week. When you find out which ones, post here and the gang will tell you their experiences.

    3. The PEG is a very good idea and while a nuisance, it is no big deal for a few months to help keep your weight on. It is a simple procedure to put in, where they put a lighted Endoscope down into your tummy and when they get to your Stomach, they get the right place and the light can be seen from the outside and a second Doctor will insert a small tube usually an inch or two above your navel. Your will have about 4" - 6" of tube sticking out with a set of simple clips. THis allows you to introduce food directly into your stomach. It's easy and effective and usually temporary as your throat will be a bit sore while you are getting Rads till a month or so after. you just need to clean the entrance point daily and replace a small dressing around the tube. Al easy.

    4. We all react differently to the treatment, some walk it in, others get very sick with pain and nausea. The first 3 weeks are usually OK then it might get rough but we all got through it and so will you.

    That's enough for now from me. Post whenever and let the gang help you through. Report whatever your Doctors say as many here can then share their experience and advice.

    Stay positive.
    Scambuster

    Everything Scam Said...
    Denise,

    You are definitely in the right place now. Folks here will know the answers to your questions.

    Scam dscribed the PEG tube. There is also a G-Tube or Gastronomy Tube that others here have received. I do know the installation surgery is a bit different. I had the PEG, so I don't know all the details, but it does involve a bit more surgical effort and takes a bit longer to heal up.

    In either event, the tubes work the same and you will find it very helpful to maintain your weight during treatment. My insurance paid for a feeding pump, which was the very easiest way to use the tube, but in any event, it is easy to use however you use it.

    Best wishes for a smooth course of treatment for you.

    Deb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Welcome Aboard....
    There's a wealth of knowledge and experience here. Absolutely the best source of people with first hand experience and more than willing to help you on your journey.

    Best,
    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    first- congrats
    Denise
    First of all I must congradulate you on surviving 10 years with breast cancer. Just amazing! Now you have already started another survivorship that will continue to many years to come.

    I am an almost 15 year survivor from SCC, two plus years ago they thought my cancer was back and located on my pharynx. Soon to find out it was not cancer but nercrosis, which was good news. Same time they installed a trach as they found restriction due to radiation damage from treatment in 1996. The trach can be a challenge to deal with in the beginning but I have found it mlanagable over the last 17 months and has helped with tremendously with breathing.

    Already shared by others is that most Head & Neck Cancers are treated with radiation, chemo and surgery. Please know that the equipment used today is far better than the equipment used 14 years ago for radiation so there will be less side effects.

    I was told when they thought 17 months ago the cancer was on pharynx they told me that surgery to reconstruct was a challenge they have had big success over the last 5 years. I have no idea what it would feel like to have breast cancer as a woman I can say that after listening to many doctors in the cancer field that H&NC treatments are the most painful over a long period of time. But the H&NC cancer also only stay in the head, neck and lung areas. Most likely you will have mouth sores, dry mouth, neck stiffness, trouble swallowing and tested positive mental attitude as side effects from treatment.

    In my opinion keep a Positive Mental Attitude is 80% of beating this ugly sickness.

    Welcome to the CSN, I have only been on for months but wish I had found many many years ago. All those here are supports willing to help in anyway possible. Keep posting and they will keep supporting.

    Thoughts go out to you and your family. Please keep your CSN support friends update.

    John
  • Glenna M
    Glenna M Member Posts: 1,576
    #8
    Welcome
    Denise, I also have laryngeal cancer (vocal cords), mine was diagnosed as Squamous Cell Carcinoma supraglottic cancer and was staged at T3N0M0. I received 35 radiation treatments and chemo (cisplatin 2 days a week in 3 week cycles). The 28th of this month I will be one year post treatment and I am still in remission and doing great!!!

    Please make sure you ask your doctors as many questions as you can about treatment, side effects, etc. You may want to take someone with you to your appointments (if possible) and write down all the answers your doctors give you. Trying to remember everything they say will be next to impossible as you have a lot on your mind now and are probably walking around in a fog, most of us were after the initial diagnosis. Demand answers from your doctors, you are paying them to take care of you and you have the right to expect them to explain everything to you.

    As you learn more about your type of cancer and the treatment plan please come back with any questions or concerns you have. We have all been through there, done that and will help you through this. It's very important that you remember one thing...YOU CAN DO THIS!!

    We are all here for you!!!
    Glenna
  • denistd
    denistd Member Posts: 597
    #9
    Glenna M said:

    Welcome
    Denise, I also have laryngeal cancer (vocal cords), mine was diagnosed as Squamous Cell Carcinoma supraglottic cancer and was staged at T3N0M0. I received 35 radiation treatments and chemo (cisplatin 2 days a week in 3 week cycles). The 28th of this month I will be one year post treatment and I am still in remission and doing great!!!

    Please make sure you ask your doctors as many questions as you can about treatment, side effects, etc. You may want to take someone with you to your appointments (if possible) and write down all the answers your doctors give you. Trying to remember everything they say will be next to impossible as you have a lot on your mind now and are probably walking around in a fog, most of us were after the initial diagnosis. Demand answers from your doctors, you are paying them to take care of you and you have the right to expect them to explain everything to you.

    As you learn more about your type of cancer and the treatment plan please come back with any questions or concerns you have. We have all been through there, done that and will help you through this. It's very important that you remember one thing...YOU CAN DO THIS!!

    We are all here for you!!!
    Glenna

    laryngeal cancer
    Glenna is absolutely right, I made the mistake of not remembering what the doctor told me, when I came home from my first visit to him I told my wife I had cancer on my false vocal cord, I was wrong it was the same as Glenna's. When we went to our planning meeting with the onc team I thought they said stage 2, when in fact they said late stage 2 or early stage 3, they decided to treat it as stage 3. So write down their comments. Sometimes the worst enemy in is your head. Denis
  • JUDYV5
    JUDYV5 Member Posts: 392
    #10
    feeding tube
    My cancer was in the lower part of my phyrnax. I have always been a thin person and didn't have a lot to lose. During the course of treatment I dropped around 15 pounds. I really don't think I would of survived without the feeding tube. Congratulations on beating the C once I am sure you will again. I learned more about surviving throat cancer from this website then from the doctors. Keep reading and good luck !!!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    JUDYV5 said:

    feeding tube
    My cancer was in the lower part of my phyrnax. I have always been a thin person and didn't have a lot to lose. During the course of treatment I dropped around 15 pounds. I really don't think I would of survived without the feeding tube. Congratulations on beating the C once I am sure you will again. I learned more about surviving throat cancer from this website then from the doctors. Keep reading and good luck !!!

    Welcome
    Sounds like you got a good team with you, Denise, and that's a good start. And Congrats to already being a Survivor for so long.

    As others have mentioned, PEGs can be a very good thing. A blessing, really. At worst, they can be a nuissance- one which eliminates the struggle of getting the necessary Nutrition. YOU MUST GET THE NEEDED NUTRITION INTO YOU, Denise- the ammo your body needs to fight the best fight with this C thing. Jevity formula is the good stuff for PEGs, gotten thru a home med establishment you team can refer you to.

    The Port is not that big of a deal, either. Minor outpatient Op for both the Peg and Port, and soon after you get it the Port will be nothing more than a little bump to you.

    You survived Breast C, Denise, and you will survive this. We all bear testimony to that H&N fact. This is 2010, and the success rate is off the charts to the positive! Please stay with us, give us updates, and ask any question or tell of any concern. That's why we are here.

    kcass
  • Pam M
    Pam M Member Posts: 2,196
    #12
    Like the Others
    Glad you joined the club - sorry you qualify for membership. My cancer WAS T2N2 - mid size primary tumor (base of tongue) with two lymph nodes involved. I was staged at stage IV, only because of the lymph nodes being affected. Also like the others, I have been, and still am helped greatly by the folks on this website - I was lucky enough to find the website before treatments started. I also had a PEG (feeding tube); a nuisance and blessing all in one. Congrats on your breast cancer survivorship - keep up the good work.
  • Glenna M
    Glenna M Member Posts: 1,576
    #13
    Gastrostomy
    Denise, I googled gastrostomy and found this website
    http://www.surgeryencyclopedia.com/Fi-La/Gastrostomy.html which described the procedure, very informative. Sorry but I don't know how to do this as a link so you will have to cut and paste the above web address. The procedure is a little different than having a PEG tube but the end results are the same...it will be a means of getting the nutrition you need if you are unable to eat during treatment.

    Please keep us updated on any upcoming procedures/treatments and we will help you in any way we can.

    Stay strong,
    Glenna

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