Preparing for Cancer Treatmet

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Its been 10 days since I was diagnosed with SCC HPV+ of the left tonsil, possible cance in one lymph node on the same side.  Was told after the biopsy that it was stage I but if its in the lymph node I guess that would change.  I have seen the Oncologist, will see the Radiation Specialist this week and together with my ENT the three of them will come up with a plan of attack.

I am so thankful for this site as I have learned a great deal of what I am to expect during this journey based upon the experience of others.  However I have not read much for those about to start this journey, specificially,

  • what questions should I absolutely ask my doctors;
  • what has worked best for others regarding surgery, chemo and radiation;
  • what should I avoid doing, eating, medications, etc;
  • how do chemo and radiation change one's everyday life;
  • tell me about the pain I should expect (what type, when does it begin, duration, how best to manage it);
  • what should my wife (my primary caregiver expect (tips please);
  • I have purchased a journal to keep notes, prescriptions, etc, anything else I can do to prepare?
  • how will this affect my ability to meet with others (church, civic group responsibilities, meeting with friends, etc.).

As both my wife and I are retired, this will become my full time job but I think diversions will be important, yes or no?

Thank you

Bob

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    long list

    Hi Bob,

    Welcome to the H&N forum, I am sorry you find yourself here, but we do what we can to help.

    First off, it sounds like you caught the cancer in the early stage and you treatment will be behind you sooner than you think.  Now for my input on your questions:

    what questions should I absolutely ask my doctors;

    Chose an experienced oncologist and treatment center, take someone with you to appts, take notes.  Read the Superthread for ideas on questions

    what has worked best for others regarding surgery, chemo and radiation;

    I opted for surgery, rads and Erbitux,  all combinations of the 3 are discussed here.  Look your doctor in the eyes and ask what he would do and why.

    what should I avoid doing, eating, medications, etc;

    Prior to treatments, so what you normally do.  During treatments, ask your doctors and nurses about all medications, lotions and supplements.

    how do chemo and radiation change one's everyday life;

    On the bright side, so far it has made me free from cancer.  On the down side, I have dry mouth and not so normal taste buds, but each is truly getting better every day.

    tell me about the pain I should expect (what type, when does it begin, duration, how best to manage it);

    I had 2 bad pains, the first was a bad PEG tube which had to be replaced around week 5, then it was ok,  The second was neck burn during weeks 6, 7 & 8, it was terrible until I got the correct cream, then it was only an inconvenience.

    what should my wife (my primary caregiver expect (tips please);

    read the superthread, seek help if needed, tell your team everything that is going on, find time to herself, get use to sound of hacking, coughing, choking, buy some ear plugs (lol)

    I have purchased a journal to keep notes, prescriptions, etc, anything else I can do to prepare?

    There is a list of must haves in the superthread, be prepared, week-ends can last forever.

    how will this affect my ability to meet with others (church, civic group responsibilities, meeting with friends, etc.).

    Do what you can do.  It is great to get out and do some things.  You are going to be week and tired.

    Good luck,

    Matt

  • faithful65
    faithful65 Member Posts: 10
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    CivilMatt said:

    long list

    Hi Bob,

    Welcome to the H&N forum, I am sorry you find yourself here, but we do what we can to help.

    First off, it sounds like you caught the cancer in the early stage and you treatment will be behind you sooner than you think.  Now for my input on your questions:

    what questions should I absolutely ask my doctors;

    Chose an experienced oncologist and treatment center, take someone with you to appts, take notes.  Read the Superthread for ideas on questions

    what has worked best for others regarding surgery, chemo and radiation;

    I opted for surgery, rads and Erbitux,  all combinations of the 3 are discussed here.  Look your doctor in the eyes and ask what he would do and why.

    what should I avoid doing, eating, medications, etc;

    Prior to treatments, so what you normally do.  During treatments, ask your doctors and nurses about all medications, lotions and supplements.

    how do chemo and radiation change one's everyday life;

    On the bright side, so far it has made me free from cancer.  On the down side, I have dry mouth and not so normal taste buds, but each is truly getting better every day.

    tell me about the pain I should expect (what type, when does it begin, duration, how best to manage it);

    I had 2 bad pains, the first was a bad PEG tube which had to be replaced around week 5, then it was ok,  The second was neck burn during weeks 6, 7 & 8, it was terrible until I got the correct cream, then it was only an inconvenience.

    what should my wife (my primary caregiver expect (tips please);

    read the superthread, seek help if needed, tell your team everything that is going on, find time to herself, get use to sound of hacking, coughing, choking, buy some ear plugs (lol)

    I have purchased a journal to keep notes, prescriptions, etc, anything else I can do to prepare?

    There is a list of must haves in the superthread, be prepared, week-ends can last forever.

    how will this affect my ability to meet with others (church, civic group responsibilities, meeting with friends, etc.).

    Do what you can do.  It is great to get out and do some things.  You are going to be week and tired.

    Good luck,

    Matt

    Thanks Matt

    Matt,

     

    Thanks, I am deep into reading the Superthread and so grateful for you comments.

    Bob

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    bob, you and ur wife come

    bob, you and ur wife come here often with any question and concerns.  someone is usually here to help and answer you immediately.  we are always willing to help, pray, encourage, listen, and whatever esle you need.  u've found a great site with great people.  wishing you the very best and fewest side effects possible.  keep us posted on ur progress.

    God bless you,

    dj

  • KB56
    KB56 Member Posts: 318 Member
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    Preparing for treatment

    Bob, the good news is you seem to have caught it early and your long term prognosis should be excellent but you are in for the battle of your life.  It will be tough but stay positive and lean on your friends, family and this site for support.   Mine started in my right tonsil and had spread to the lymph nodes in the right side of my neck and was stage 4 when we found it.   I m six months from my last treatment and have had 2 clean scans and all in all feeling pretty good.  The long term survival rate for the HPV type cancers is excellent so you have a few tough months ahead but long term your future should be very bright!

    You are preparing for battle and my brother and I used to joke about my battle checklist:

    1) go to the dentist and get a thorough checkout and get a fluoride tray that you will use every night.   The radiation plays hell on your teeth/saliva glands so brush and floss often, and use the flouride tray every night as it will help. 

    2) many different opinions on PEG tube (feeding tube) but I had one and was so tha thankful I did.   i lost 30 pounds with the tube and can't imagine how much I would have lost if I didn't have it.    My wife is a nurse with a gastro intestinal group and those doctors strongly recommended it and I'm glad I did it.   You can also take your meds through it and can stay hydrated which is key.  

    3) sign up for a site called "caringbridge".   It allows you to keep in touch with friends and family and in your words let them know how you are doing.  They can also post words of encouragement, notes back to you as well.    It will save your wife from having to give the same update multiple times a day ( which will happen anyway) and I found it very therapeutic in putting what I was going through in words.  

    4) the tonsillectomy will hurt but my ENT wouldn't let them start chemo or radiation until 3 weeks after my tonsillectomy as they wanted to give it a chance to heal before they started the treatments   I lost 12 poundos during the tonsillectomy recovery and my ENT said 10 pounds was the norm so you won't have a chance to "fatten up" before starting treatment so the PEG tube will help here as well. 

    5) my oncologist recommended Erbitux as my chem drug.   Much less toxic that previous chemo drugs and very effective against HPV type cancers.  the biggest side effect was acne but that will pass before you finish treatments.  After the first couple of sessions I handled it pretty well 

    6) the radiation for me was brutal and was really tough.   Everyone handles it a little different but for me it was tough.   With the support if friends and family I made it through 34 treatments and it worked.   You'll most likely have several different symptons along the way and the doctor will give you meds and suggestions to help with each of them but get prepared mentally as it will be tough.  The first couple of weeks aren't too bad but radiation is a cumlative thing so the more sessions you get the more side effects you'll start to develop.    They will do everything g possible to only radiate areas that need it to save saliva glands and other tissue but it will definitely be challenging at times.  

    Get get prepared mentally, learn all that you can learn about the disease and treatments and ask questions when you have any.  Everyone on this site has pretty much walked in your shoes and been down the same road your are preparing to start.   You can and will make it.    Everyone handles the treatments and reactions differnt but between the great folks on this site most will have experienced what you will experience and can really help so don't hesitate to reach out.  

     

    best of luck as you start the fight,

    keith

  • donfoo
    donfoo Member Posts: 1,773 Member
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    Proactive is the ticket

    Bob,

    First, sorry about the diagnosis but it is what it is. Second, congratulations on being proactive to learn and get prepared for a very intense treatment plan. Third,

    • what questions should I absolutely ask my doctors
      Many suggest getting a second opinion at a NCI designated CCC. These facilities are know to have a fully integrated approach to your care and treatment. Even if you do not do this make sure your care is team based and that your case is reviewed by tumor board. If your doctor does not participate in a team based approach, I would look for a provder who does.
    • what has worked best for others regarding surgery, chemo and radiation;
      What works best is what is recommended and in adherence to the standard of care as defined in the NCCN guidelines.
    • what should I avoid doing, eating, medications, etc;
      Keeping on weight is an issue all face. Eat anything and everything you possibly can digest. Bacon, ham, lard, eggs, whatever. This is no time to consider if food is heatly as all food consumed is far better than any food avoided.

    • how do chemo and radiation change one's everyday life;
      You will most likely be sick as hell during treatment. Chemo can lay you down for a couple days or a week or more. My cycle was three weeks and just as I was finally shaking off the side effects, the next round was waiting. Radiation side effects just accumulate and grind you down. Plan on 10-12 weeks to feel the uptick. Remember, this only applies if such treatment is recommended; some just do surgery, others all combinations.

      It is fine to get prepared but also don't get ahead of yourself. Be knowledgable but wait to have the conversation before letting your thoughts run wild.

    • tell me about the pain I should expect (what type, when does it begin, duration, how best to manage it);
      Again, pain is totally dependent on the specific treatments you receive and also your own unique medical history and condition and makeup. This is where the "everyone is different" quote comes in. In fact, everything about your cancer and treatment is unique; you can only learn what can happen and be prepared to adjust based on you.

    • what should my wife (my primary caregiver expect (tips please);
      Some feel better if a second set of ears is at the appointments. Personally, the better prepared and personally involved the patient is like you, the less the need to drag her along. If you are up to speed you will be firing the questions, know the typical range of responses, so it is much less likely you will miss much. Of course others including the caregiver may find comfort attending and hearing themselves.  Some appointments and treatments benefit wtih a driver getting you home, so make sure to ask if they do not mention those times.
      The most important role of the caregiver is to ensure you address the three golden goals: HYDRATION - NUTRITION - PAIN MANAGEMENT. If you do nothing else and can only remember three things, this is the list. You cover these three areas and you will get through this in as good a shape as possible. Period.

    • I have purchased a journal to keep notes, prescriptions, etc, anything else I can do to prepare?
      That should be fine. There will be lots of paperwork so get a couple binders with tabs. A three hole punch will be clunking along all the time. Staying organized with the paperwork is a big deal. Calendar is obvious to keep track of all the appointments. Use pencil as they are subject to change.

    • how will this affect my ability to meet with others (church, civic group responsibilities, meeting with friends, etc.).
      This all depends on how you feel. Make reasonable effort to maintain your current routine but do not think twice and surrender when your body says you need to sleep or rest.

     

    • As both my wife and I are retired, this will become my full time job but I think diversions will be important, yes or no?
      Not sure what can be more of a diversion than planning and going through cancer treatment and recoverying your heath. Between this new diversion and your current routine you won't have any time to pick up a new sport or take that trip to Vegas.

      You are doing great so far, hang in there, keep your eyes and ears open, be prepared, get educated primarily to ensure you do not get "blindsided" or suprised as so often happens.

      Don

     

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Asking questions about

    about subject matter we're not familiar with is tough.  I took both of my sisters with me, and my little sis recorded both the Oncologist and the RO....I had a lot more questions once things started.  I found that my Oncologist was a very newsy guy, and my appointment with him lasted nearly 3 hours....he listed every possible side effect, assured me that I was going to be ok....and that they'd take very good care of me....they did.  The RO was possitively glib.....saying the only drawback with rads would be a bad sunburn....Ah....but my Onc took such care of me, they pretty much took over all the side effects from the rads, too.  Looking back the things I needed to know most were.....how will we control nausea.....neck burns, and what about this feeding tube business.  I had a tube placed before treatment, but when the time came to use it....nobody had told me diddly squat HOW to use it.

    As long as you feel like doing things, do them!  As time passes, you'll find your energy draining, but still it's good to get out a little....take a walk, go for a drive.....but believe your body when it tells you to rest.  For now eat anything and everything you want...go for your favorites while you can still taste them.....I ate dozens of cheeseburgers and had lots of Mexican food before treatment started....I don't like them much anymore so I'm glad I ate them while they were my favorites Smile.

    Pain is relative to each and every person.....plus everybody is different in how their bodies are affected by treatment.  I basically skated through rads and the first 3 chemo's (I had large dose Cisplatin every 3 weeks, and 35 rads)....my throat never got very sore, and my neck skin held up till about the 4th week, but still it never got like Matts or Tim's.  Because I had NPC, I had adjuvent chemo....that was 3 more large dose Cisplatins with added 5FU after rads were over.....that's when things got dicey for me....5FU gave me hamburger mouth.....and I was totally dependent on the tube to eat or drink.  3 weeks after the last chemo tho, I was back to eating and drinking.  Your responsibility is to to keep your Drs. up to speed on how you feel.....if you're nauseated tell them, if your throat is highly painful, let them know......if your neck starts peeling and cracking they will help you get through that.  There are a lot of meds out there to make this experience less painful.  One thing they did make me stop taking was anti-oxidents.....no Vit E, fishoil, etc.....I quit taking all supplements during treatment.

    While you are getting chemo they will be testing your blood often.....they are looking for lowered red blood cells, white blood cells, platlets, hemogloblin......these are what says how social you can be and what all you can do (of course, how you feel will also dictate what your social life might be like).  Lowered white cells means your immune system is down.....stay away from sick people and places where sick people go....like the grocery store, work, etc.  Lowered red cells will make you feel weak, and tired.....lowered platlets means they don't want you falling your head, or doing sword tricks because your clotting abilities are compromised.

    My main caretaker was my husband.....he had no clue about how to caretake anything.....but he learned and was great at it.  He pestered me to eat, and I ate (usually scrambled eggs, that's all he knows how to cook Laughing).....he pestered me to sleep and I slept.....he took me to the Onc every single day to get my amafostine shot, then came back and took me to rads.....What the patient needs to remember is that your caretaker is going through this, too....and it's worse being a caretaker than it is being the patient.....Even on the days I had a hard time being grateful for anything, I drummed up gratitude for my husband's care and let him know.  I also made sure he did the things he likes to do.....he wasn't my maid, nor did I feel that he should be with me 24/7.....

    You've been dropped into a foreign country, you didn't ask to go to...... where you don't know the language or the customs..... but you're going to find that you figure things out quickly.....the language will become familiar, and getting through the day by day will start to seem normal....and then poof, it's over and healing begins.  And as I said above.....diversions are important.....a walk, a drive, seeing friends.....take your mind off of cancer for a little while.....make plans for the future (a trip to somewhere you've always wanted to go).

    You're going to get through this and come out the other side.....maybe a little abi-normal (that's John's (Skiffin) word)......but hey, you'll still be on this side of the dirt, and your love of life will be enhanced.

     

  • hwt
    hwt Member Posts: 2,328 Member
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    Asking questions about

    about subject matter we're not familiar with is tough.  I took both of my sisters with me, and my little sis recorded both the Oncologist and the RO....I had a lot more questions once things started.  I found that my Oncologist was a very newsy guy, and my appointment with him lasted nearly 3 hours....he listed every possible side effect, assured me that I was going to be ok....and that they'd take very good care of me....they did.  The RO was possitively glib.....saying the only drawback with rads would be a bad sunburn....Ah....but my Onc took such care of me, they pretty much took over all the side effects from the rads, too.  Looking back the things I needed to know most were.....how will we control nausea.....neck burns, and what about this feeding tube business.  I had a tube placed before treatment, but when the time came to use it....nobody had told me diddly squat HOW to use it.

    As long as you feel like doing things, do them!  As time passes, you'll find your energy draining, but still it's good to get out a little....take a walk, go for a drive.....but believe your body when it tells you to rest.  For now eat anything and everything you want...go for your favorites while you can still taste them.....I ate dozens of cheeseburgers and had lots of Mexican food before treatment started....I don't like them much anymore so I'm glad I ate them while they were my favorites Smile.

    Pain is relative to each and every person.....plus everybody is different in how their bodies are affected by treatment.  I basically skated through rads and the first 3 chemo's (I had large dose Cisplatin every 3 weeks, and 35 rads)....my throat never got very sore, and my neck skin held up till about the 4th week, but still it never got like Matts or Tim's.  Because I had NPC, I had adjuvent chemo....that was 3 more large dose Cisplatins with added 5FU after rads were over.....that's when things got dicey for me....5FU gave me hamburger mouth.....and I was totally dependent on the tube to eat or drink.  3 weeks after the last chemo tho, I was back to eating and drinking.  Your responsibility is to to keep your Drs. up to speed on how you feel.....if you're nauseated tell them, if your throat is highly painful, let them know......if your neck starts peeling and cracking they will help you get through that.  There are a lot of meds out there to make this experience less painful.  One thing they did make me stop taking was anti-oxidents.....no Vit E, fishoil, etc.....I quit taking all supplements during treatment.

    While you are getting chemo they will be testing your blood often.....they are looking for lowered red blood cells, white blood cells, platlets, hemogloblin......these are what says how social you can be and what all you can do (of course, how you feel will also dictate what your social life might be like).  Lowered white cells means your immune system is down.....stay away from sick people and places where sick people go....like the grocery store, work, etc.  Lowered red cells will make you feel weak, and tired.....lowered platlets means they don't want you falling your head, or doing sword tricks because your clotting abilities are compromised.

    My main caretaker was my husband.....he had no clue about how to caretake anything.....but he learned and was great at it.  He pestered me to eat, and I ate (usually scrambled eggs, that's all he knows how to cook Laughing).....he pestered me to sleep and I slept.....he took me to the Onc every single day to get my amafostine shot, then came back and took me to rads.....What the patient needs to remember is that your caretaker is going through this, too....and it's worse being a caretaker than it is being the patient.....Even on the days I had a hard time being grateful for anything, I drummed up gratitude for my husband's care and let him know.  I also made sure he did the things he likes to do.....he wasn't my maid, nor did I feel that he should be with me 24/7.....

    You've been dropped into a foreign country, you didn't ask to go to...... where you don't know the language or the customs..... but you're going to find that you figure things out quickly.....the language will become familiar, and getting through the day by day will start to seem normal....and then poof, it's over and healing begins.  And as I said above.....diversions are important.....a walk, a drive, seeing friends.....take your mind off of cancer for a little while.....make plans for the future (a trip to somewhere you've always wanted to go).

    You're going to get through this and come out the other side.....maybe a little abi-normal (that's John's (Skiffin) word)......but hey, you'll still be on this side of the dirt, and your love of life will be enhanced.

     

    Bob

    Sorry that you had the need to find this forum but you will be glad you did. My approach was "take it as it comes and deal with it". Not everyone gets every side effect so it can be wasted worry. I didn't get the neck burn til post tx and mine turned dark and peeled but never broke open and never hurt. I also dodged a huge bullet with the mucus issues and never got nausea but took drugs to prevent. With that being said, it certainly wasn't a walk in the park. Worst thing for me was lip sores. Mid tx I slept about 20 hours out of every 24, forcing myself to get up to eat and take a brief walk. Week 5-6 post tx, I got all of my energy back plus some, likely from a needed 65 pound weight loss. My husband gained weight from everything I thought I wanted to eat but then didn't want or mostly couldn't eat.  

    I had a Hohn catheter vs. a port. And I had a G-tube vs. a PEG. I found neither cumbersome. You may wish to ask your doctor about your options. 

    As far as your wife, be certain she gets some "me time" for herself throughout this journey. My husband (retired) was awesome but one of my happy memories was the day my sisters picked him up and took him to the casino. It did both of us good. Your body will tell you what you can do when it comes to outtings....just take a bottle of water with you!

    Prayers that your journey is an easy one.

    Candi in STL 

  • faithful65
    faithful65 Member Posts: 10
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    hwt said:

    Bob

    Sorry that you had the need to find this forum but you will be glad you did. My approach was "take it as it comes and deal with it". Not everyone gets every side effect so it can be wasted worry. I didn't get the neck burn til post tx and mine turned dark and peeled but never broke open and never hurt. I also dodged a huge bullet with the mucus issues and never got nausea but took drugs to prevent. With that being said, it certainly wasn't a walk in the park. Worst thing for me was lip sores. Mid tx I slept about 20 hours out of every 24, forcing myself to get up to eat and take a brief walk. Week 5-6 post tx, I got all of my energy back plus some, likely from a needed 65 pound weight loss. My husband gained weight from everything I thought I wanted to eat but then didn't want or mostly couldn't eat.  

    I had a Hohn catheter vs. a port. And I had a G-tube vs. a PEG. I found neither cumbersome. You may wish to ask your doctor about your options. 

    As far as your wife, be certain she gets some "me time" for herself throughout this journey. My husband (retired) was awesome but one of my happy memories was the day my sisters picked him up and took him to the casino. It did both of us good. Your body will tell you what you can do when it comes to outtings....just take a bottle of water with you!

    Prayers that your journey is an easy one.

    Candi in STL 

    Thank you plus a question regarding Transoral Endoscopic Surgery

    Candi,  Thanks to you as well as to Matt, dj, Keith, Don, and Phranie.  I am taking your advice and recommendations to heart.

    My question is do you know of anyone who had their tonsil removed (aside from Keith who gave me some valuable information). 

    John Hopkins is advocating surgery for early stage cancers of small size, and I think I qualify.  Transoral Endoscopic Surgery.  Website says: Many patients with smaller tumors in the mouth, throat and voice box may be candidates for tumor removal through the mouth (transoral).  This is a minimally invasive technique that avoids incisions through the neck or face. These procedures result in less swelling, less scarring and a lower risk of infection. It also helps preserve function and appearance. Patients may be able to eat right after surgery, and even if their voice is affected it may be still be functional.   Our team has much experience in transoral surgery using both the laser and the surgical robot (transoral robotic surgery or TORS).  Johns Hopkins was the first center in Maryland to begin TORS and remains a leader in this area.

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/head_neck/cancers/treatment.html

    Grateful for all your help and information

    Bob

     

  • spector551
    spector551 Member Posts: 109
    Options

    Thank you plus a question regarding Transoral Endoscopic Surgery

    Candi,  Thanks to you as well as to Matt, dj, Keith, Don, and Phranie.  I am taking your advice and recommendations to heart.

    My question is do you know of anyone who had their tonsil removed (aside from Keith who gave me some valuable information). 

    John Hopkins is advocating surgery for early stage cancers of small size, and I think I qualify.  Transoral Endoscopic Surgery.  Website says: Many patients with smaller tumors in the mouth, throat and voice box may be candidates for tumor removal through the mouth (transoral).  This is a minimally invasive technique that avoids incisions through the neck or face. These procedures result in less swelling, less scarring and a lower risk of infection. It also helps preserve function and appearance. Patients may be able to eat right after surgery, and even if their voice is affected it may be still be functional.   Our team has much experience in transoral surgery using both the laser and the surgical robot (transoral robotic surgery or TORS).  Johns Hopkins was the first center in Maryland to begin TORS and remains a leader in this area.

    http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/head_neck/cancers/treatment.html

    Grateful for all your help and information

    Bob

     

    Bob

    Many of us had our tonsils removed after the discovery of the tumor. I had my tonsils removed and the tumor was just over 2 cm. I was Stage 2 with two lymph node involvement on the right side. My tonsils were removed and then they pulled my teeth because they thought I would have a lot of probs with them after radiation. My tonsil removal was not done with any robotic accessory, but by the very skilled had of my ENT and she did a whale of a job and got the entire tumor out with clear margins. Following that was still a diffucult treatment of Cisplatin and radiation for 7 weeks.

     

    God bless,

    Jamie

  • ronlyn0412
    ronlyn0412 Member Posts: 4
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    Bob, prayers to you and your

    Bob, prayers to you and your family... I was diagnosed on 18 Dec. with stage 3 squamous cell carcinoma in the lymph nodes in my neck...One mass is 3.5 cm and solid..I am having a PET scan friday to determine if it has spread and surgery on the 10th..I will be having 7 weeks of radiation 5 days a week and once a week chemo...be very open and direct with all doctors and include your family

  • ronlyn0412
    ronlyn0412 Member Posts: 4
    Options

    Bob

    Many of us had our tonsils removed after the discovery of the tumor. I had my tonsils removed and the tumor was just over 2 cm. I was Stage 2 with two lymph node involvement on the right side. My tonsils were removed and then they pulled my teeth because they thought I would have a lot of probs with them after radiation. My tonsil removal was not done with any robotic accessory, but by the very skilled had of my ENT and she did a whale of a job and got the entire tumor out with clear margins. Following that was still a diffucult treatment of Cisplatin and radiation for 7 weeks.

     

    God bless,

    Jamie

    Bob prayers out to you..I was

    Bob prayers out to you..I was diagnosed with stage 3 squamous cell carcinoma in my lymph nodes in my neck on 18 Dec.. I have a pet scan next week and surgery the following week and then 7 weeks of radiation and chemo

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

     

    Looks like you got all the info already so I will just welcome you to the family my friend

     

    God Bless

    Hondo

  • faithful65
    faithful65 Member Posts: 10
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    Hondo said:

    Hi Bob

     

    Looks like you got all the info already so I will just welcome you to the family my friend

     

    God Bless

    Hondo

    Thank You

    Thank you to the many who have provided so much valuable information.  I meet my Radiologist tomorrow, meet the Surgeon on Monday.  Praying that I might be a candidate for Transoral Endoscopic Surgery as that seems the least invasive way to go.  Still trying to figure out basis as to why some people get radiation and some get radiation/chemo afterwards.

    Bob

  • MarineE5
    MarineE5 Member Posts: 1,032 Member
    Options

    Thank You

    Thank you to the many who have provided so much valuable information.  I meet my Radiologist tomorrow, meet the Surgeon on Monday.  Praying that I might be a candidate for Transoral Endoscopic Surgery as that seems the least invasive way to go.  Still trying to figure out basis as to why some people get radiation and some get radiation/chemo afterwards.

    Bob

    Bob

    Many times we are given options for surgery/ radiation/and or Chemo. depending on the staging, size of tumor, location,etc.

    I had Base of Tongue and my Surgeon had not started using the Robotic Surgery yet, 2004. Depending on the Lymphnodes involved,if any, you still may need a neck disection. No lymphnodes involved, no neck disection. I had Radiation after my Surgery (2 lymphnodes involved from over 30 removed) I asked why no Chemo and the Cancer Team told me that they wanted to keep it as a safety net in the event of reaccurance, which did not happen.

    My Best to You and Everyone Here

  • faithful65
    faithful65 Member Posts: 10
    Options
    MarineE5 said:

    Bob

    Many times we are given options for surgery/ radiation/and or Chemo. depending on the staging, size of tumor, location,etc.

    I had Base of Tongue and my Surgeon had not started using the Robotic Surgery yet, 2004. Depending on the Lymphnodes involved,if any, you still may need a neck disection. No lymphnodes involved, no neck disection. I had Radiation after my Surgery (2 lymphnodes involved from over 30 removed) I asked why no Chemo and the Cancer Team told me that they wanted to keep it as a safety net in the event of reaccurance, which did not happen.

    My Best to You and Everyone Here

    MarineE5

    Thanks for your note, that explains a lot.