Just diagnosed with squamous cell carcinoma of the tongue 1/27/15

Hi I'm so overwhelmed by all this. I was just given the diagnosis of squamous cell carcinoma on the right underside of my tongue the drs told me it's stage two. I had a CAT scan and they said they don't see it any lymphnodes they want to take a chunk of my tongue and remove the lymphnodes in my neck. I'm so scared I've never been put under anesthesia before. My stomachs in knots I just look at my little two yr old cry. Can aomeone give me some kind of hope. The drs are so monotoned. I try to stay positive but when ever I google something about my cancer it sounds so bleak. I want to be strong for my family. 

«1

Comments

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

    Welcome to the H&N, and sorry you need to be here. At this stage, don't google, it's to easy to get the wrong sites. We have a Superthread at the top that is a read only [ Link to make it easy: http://csn.cancer.org/node/261072 ]

    My first question is are you going to a local Dr or to a Major haspital for cancer and do this all the time. Depending where you live and how far you want to drive, it can matter. http://health.usnews.com/best-hospitals/rankings/cancer .

    You will want to go to someone who has done many of these and has a tumor board. [That is where all the Dr are together and all decide what it best. Radiologist; Surgen; Oncologist; pathologist; and even nutritionist].

    Next: This is beatable and so many have before you. Stage two is good that means you cought it early. The removel of the lymph nodes is scarry, but it's not that bad. They took 86 out of me and I slept through it, The surgery as well. You wake up and it's over. You are going on a bumpy road, but you will make it. They want to remove it and they will rebuild it as well. 

    When you go to your doctor please take someone with you just to help listen. They will say something and you will go blank, and might not hear it right. For your questions, write them down and hand them to the Dr. He should answer all of them for you. My Dr wrote the answere and handed it back.

    There is many here that have had the same as you do, BOT. You will get answere and support you will need to get through this. Will add you to my prayer list. 

    Mine was stage 3 T3,N0,M0 SCC of the larnyx, and had the tumor removed and 86 lymph glands, and my voice box. Had a Prosthesis put in [TEP]so I can still talk.  You will survive this.  

    PS: It's ok to be scared, we all were too. Just take one day at a time, and only today matters.

    Bill

  • MrsBD
    MrsBD Member Posts: 615 Member
    Hope

    Hi, Joy.

    I'm glad you found this site because you will read lots of success stories and get great advice on any problem you might have. In July, I was diagnosed with Stage 4 SCC at the base of my tongue and cancerous nodes on both sides of my neck. Like you, I started Googling and found pretty dire statistics. It was terrifying. When I saw the oncologists, they said we had better than a 90% chance of a cure. Your cancer was caught even earlier, it wasn't found in your lymph nodes, you are in good health, and, if you have a two year old, you're younger than I am. You can beat this! I did not have surgery, but there are people on this site who have. I did have chemo and radiation. A month ago, I was told there is no evidence of cancer anymore! 

    Being scared is normal. There will be a whole team to help you through this time. Talk to the nurses. They are wonderful and will help you prepare for treatment, take care of any pain you may have, and generally be your cheerleaders. Ask to see a social worker who will be able to help you with transportation, finances, and other worries. Let your church and employer know. They will want to be there for you too. And be sure to check in here. The people on this site have been awesome during my journey. 

    I will keep you in my prayers.

    Beth 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hi, joy, and welcome to the

    hi, joy, and welcome to the family although it makes us sad each time we get a new member.  i'm so sorry you have to fight the fight but stay off google, it is not a good place.  you will find the best information right here because you get it from experienced cancer fighters/survivors!  when you look at your precious 2-yr old, tell yourseld, that is your reason to fight.  and you will win this fight.  it is not an easy road, but you will make it.  we will all be here for you to encourage you, pick you up when you're down, cry with you, laugh with you, celebrate small and large things with you, and cheer you on from the sidelines.  you've joined a good family since you needed one that knows and understands the journey you are about to embark on.  right now your head is spinning and you're trying to come to grips with the realization of what you've been told.  you will be strong once your head stops spinning.  but, anytime you need to vent, cry, hollar or whatever, you can do it here.  we understand.  i am praying for you Joy, and I hope your nerves will calm down some so you can think about this rationally.  check out the superthread at the top of "topic" list.  there is fantastic information in there about everything.  and feel free to ask any question here, nothing is off limits.  check back in and let us know how you are doing.  we will be waiting to hear.  in the meantime, please don't research on the internet, most of that info is very outdated.

    God bless you,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    welcome

     Joy,

    Welcome to the H&N forum, where being scared is normal.

    I was stage IVa, scc, bot, hpv+ and they took out a chunk of tongue and did a jugular  vein dissection followed by Erbitux and radiation and I am still kicking and feeling well.  (almost 3 years post)

    This site is full of good folks which have stood where you are standing.   Treatments are sometimes tough, but doable.

    I wish you luck,

    Matt

  • joy39
    joy39 Member Posts: 4
    wmc said:

    Welcome to the H&N Group

    Welcome to the H&N, and sorry you need to be here. At this stage, don't google, it's to easy to get the wrong sites. We have a Superthread at the top that is a read only [ Link to make it easy: http://csn.cancer.org/node/261072 ]

    My first question is are you going to a local Dr or to a Major haspital for cancer and do this all the time. Depending where you live and how far you want to drive, it can matter. http://health.usnews.com/best-hospitals/rankings/cancer .

    You will want to go to someone who has done many of these and has a tumor board. [That is where all the Dr are together and all decide what it best. Radiologist; Surgen; Oncologist; pathologist; and even nutritionist].

    Next: This is beatable and so many have before you. Stage two is good that means you cought it early. The removel of the lymph nodes is scarry, but it's not that bad. They took 86 out of me and I slept through it, The surgery as well. You wake up and it's over. You are going on a bumpy road, but you will make it. They want to remove it and they will rebuild it as well. 

    When you go to your doctor please take someone with you just to help listen. They will say something and you will go blank, and might not hear it right. For your questions, write them down and hand them to the Dr. He should answer all of them for you. My Dr wrote the answere and handed it back.

    There is many here that have had the same as you do, BOT. You will get answere and support you will need to get through this. Will add you to my prayer list. 

    Mine was stage 3 T3,N0,M0 SCC of the larnyx, and had the tumor removed and 86 lymph glands, and my voice box. Had a Prosthesis put in [TEP]so I can still talk.  You will survive this.  

    PS: It's ok to be scared, we all were too. Just take one day at a time, and only today matters.

    Bill

    Hi Bill thank you for the

    Hi Bill thank you for the link it looks like the closest cancer hospital is in tampa. Right now I've been seeing a maxalfacial dr at shands in Gainesville he's the only one I've seen 

  • wmc
    wmc Member Posts: 1,804
    joy39 said:

    Hi Bill thank you for the

    Hi Bill thank you for the link it looks like the closest cancer hospital is in tampa. Right now I've been seeing a maxalfacial dr at shands in Gainesville he's the only one I've seen 

    It might be worth thinking about.

    Tampa is only about 130 miles. I went 230 miles to Stanford in California and for me it was worth it. However my Son is 28 which makes it easer for me. They aranged for my wife and son to stay in an appartment across from the hospital at a very good rate, while I was in the hospital. Some can even set it up for nothing and assist with the bill's.

    Something to check into. At least for a second opinion.

    Bill

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Hi Joy

    It is overwhelming but it is what it is and you need the mindset that it is time to do battle. I say it many times...................If I can do it so can you. I had stage 4 base of tongue, they took my epiglottis, part of my tongue, a few lymph nodes, and my uvula. I just celebrated 5 years of being cancer free last week after I visited my doc. I went to Philadelphia 75 miles away from home because that is where the local doc sent me.

    There are many fine folks on this site that can get you through anything all you have to do is ask.  Ridgt now google is not your friend all you will find there is old news and bad news. Now if your looking for the latest fashions for your two year old google that.

    Stay positive and stay strong............you found the best place on the web to help with your battle.

          Jeff

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    Old Data on Google

    Hi Joy,

    I can only echo all the sound advice that has been posted here. I did what most people do, google what is out there and as you stated, it looks bleek. Someone here told me years ago to not google as it was old information. They were correct.

    Actually the only number you should concern yourself with is the number 1 (YOU). Like the others mentioned, we are here to help you down this path and reach the finish line. The road is a bit bumpy, but doable.

    I had Base of Tongue cancer, part of my tongue removed, a radical neck disection with 30 some lymphnodes removed where 2 were involved. After surgery, I had Radiation only. Chemo was held back as a safety net in the event of recurrence which did not happen. I just passed my 10 year mark.

    Once you are happy with your Doctor(s) and a plan is in place, your mind should settle down somewhat. Hopefully your mind slows down before that, but that is when my mind stopped racing, after I knew what plan of attack we had.

    My Best to You, Your Family and Everyone Here

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome to the club

    nobody wants to join, Joy.  There is not a person here who wasn't scared silly when they first got here....not a single one!  Everything was normal just a week ago, then boom!  we find ourselves caught in the center of a word we never expected to hear....CANCER!!  I remember well.....but like you, I found this group before I started treatment....I asked hundreds of questions....I let everyone know how I was feeling.....and I found not only great information here, but so much support and kindness.  Also, the people here are so smart....they know things even the Drs. don't know on how to make this journey even more doable than it already is.  You're going to be alright. I might add....the first thing I did was drop Google searches, as per the advice I got from here....and right away my life became easier. 

    There is SO MUCH HOPE!!  You're young, you're Stage II, you have much to live for.....that's just the bottom line of hope, with much more hope to add on to it.  Treatment isn't a walk in the park....but you will see as others pop in and talk, that there are many, MANY here who have been around for a long time after getting this disease and gettign through it.  My Dr. told me up front that I'd get over this.....that something else will cause my demise somewhere down the road.....but it won't be this.  I had Stage III, Nasopharyngeal Carcinoma (NPC in the venacular).  No surgery, but I was told if my lymph nodes didn't go down during rads and chemo I'd get surgery when treatment was over.  I am now 2 1/2 years out of treatment....three years next month I got the diagnosis.   

    Pre surgery, eat all you can of whatever you want.....extra weight has now become your friend...the more fattening the better....how fun :).  Once treatment starts rules are drink, drink, drink....eat, eat, eat.....rest rest rest.  You're going to make it through this, and out the other side.....you will live to see your baby grow up!!  All done with a "one day at a time" attitude....you can do this!!

    There is at least one other person on here who went to Shands in Gainsville.....Krashpad....he doesn't post here often, but I see him a lot on Facebook.  I can introduce you if you want.

    If you stick close to the group, tho.....I can attest that you have found the best Head and Neck Cancer group on the internet....there are so many smart, smart people here.

    p

  • Sailor123
    Sailor123 Member Posts: 97
    Hi Joy:
    I'm sorry to hear you

    Hi Joy:

    I'm sorry to hear you are on this rollercoaster.  It will get easier to accept after a little time passes.  These are words none of us are ever prepared to hear.  You must be young to have a toddler.  You can get through this and even get back to normal, so don't be too frightened. I would recommend not googling about your cancer.  There is so much scary information on the internet and it is not specific to your case.  You are very LUCKY it is in stage 2.  

    I would be reluctant to have any lymph nodes removed.  Especially since they don't think the lymph nodes are involved.  You will need them to fight off cancer in the future.  They are your best line of defense.  Every doctor has a different approach, therefore it is important to get another opinion.  My lymph nodes were involved and we still managed not to take any out.  The chemo took care of them. (I'm not a medical professional but did a lot of reading and know the lymph nodes are important for fighting cancer in the future.) Its at least worth asking about.

    There is a tendancy to rush into treatment and I wish I had taken a little more time to make decisions in the beginnning.  If you are inclined, get yourself a second opinion.  The docs you have seen are monotone but there is another out there who you may relate to and who might take a different approach.

    Keep the questions coming and keep your chin up.  I finished treatment 9 months ago and am back to my normal life.  I feel REALLY good most of the time and its almost like it never happened.

    Love to you.

    Shirley

     

  • Sailor123
    Sailor123 Member Posts: 97

    Welcome to the club

    nobody wants to join, Joy.  There is not a person here who wasn't scared silly when they first got here....not a single one!  Everything was normal just a week ago, then boom!  we find ourselves caught in the center of a word we never expected to hear....CANCER!!  I remember well.....but like you, I found this group before I started treatment....I asked hundreds of questions....I let everyone know how I was feeling.....and I found not only great information here, but so much support and kindness.  Also, the people here are so smart....they know things even the Drs. don't know on how to make this journey even more doable than it already is.  You're going to be alright. I might add....the first thing I did was drop Google searches, as per the advice I got from here....and right away my life became easier. 

    There is SO MUCH HOPE!!  You're young, you're Stage II, you have much to live for.....that's just the bottom line of hope, with much more hope to add on to it.  Treatment isn't a walk in the park....but you will see as others pop in and talk, that there are many, MANY here who have been around for a long time after getting this disease and gettign through it.  My Dr. told me up front that I'd get over this.....that something else will cause my demise somewhere down the road.....but it won't be this.  I had Stage III, Nasopharyngeal Carcinoma (NPC in the venacular).  No surgery, but I was told if my lymph nodes didn't go down during rads and chemo I'd get surgery when treatment was over.  I am now 2 1/2 years out of treatment....three years next month I got the diagnosis.   

    Pre surgery, eat all you can of whatever you want.....extra weight has now become your friend...the more fattening the better....how fun :).  Once treatment starts rules are drink, drink, drink....eat, eat, eat.....rest rest rest.  You're going to make it through this, and out the other side.....you will live to see your baby grow up!!  All done with a "one day at a time" attitude....you can do this!!

    There is at least one other person on here who went to Shands in Gainsville.....Krashpad....he doesn't post here often, but I see him a lot on Facebook.  I can introduce you if you want.

    If you stick close to the group, tho.....I can attest that you have found the best Head and Neck Cancer group on the internet....there are so many smart, smart people here.

    p

    Phrannie:
    I love your new

    Phrannie:

    I love your new picture.  You look so healthy and young.  Did you change your hair color?

    I would echo your words to the new girl, but caution her to avoid sugar.  I knew I would need to gain weight when diagnosed and I immediately started eating sees candy and doghnuts.  I was later told that was the worst thing I could have done.  I should have known better but, oh well!

    CONGRATULATIONS!  Almost three years.  You are home free.

    Shirley

  • joy39
    joy39 Member Posts: 4
    Sailor123 said:

    Hi Joy:
    I'm sorry to hear you

    Hi Joy:

    I'm sorry to hear you are on this rollercoaster.  It will get easier to accept after a little time passes.  These are words none of us are ever prepared to hear.  You must be young to have a toddler.  You can get through this and even get back to normal, so don't be too frightened. I would recommend not googling about your cancer.  There is so much scary information on the internet and it is not specific to your case.  You are very LUCKY it is in stage 2.  

    I would be reluctant to have any lymph nodes removed.  Especially since they don't think the lymph nodes are involved.  You will need them to fight off cancer in the future.  They are your best line of defense.  Every doctor has a different approach, therefore it is important to get another opinion.  My lymph nodes were involved and we still managed not to take any out.  The chemo took care of them. (I'm not a medical professional but did a lot of reading and know the lymph nodes are important for fighting cancer in the future.) Its at least worth asking about.

    There is a tendancy to rush into treatment and I wish I had taken a little more time to make decisions in the beginnning.  If you are inclined, get yourself a second opinion.  The docs you have seen are monotone but there is another out there who you may relate to and who might take a different approach.

    Keep the questions coming and keep your chin up.  I finished treatment 9 months ago and am back to my normal life.  I feel REALLY good most of the time and its almost like it never happened.

    Love to you.

    Shirley

     

    Thank you all so much for

    Thank you all so much for responding to my post I felt so alone in this. I know I'm not. It just feels like it. I promise not to google anymore and come to ya'll for advice. I was wondering why they wanted to take my lymph nodes if they weren't affected. I do feel that I'm being rushed by the drs I'm almost 40 and I know nothing good comes from rush decisions. I think I'm going to try and contact the Moffett cancer center in tampa it's atop ranked hospital. ( Thanks again Bill for the idea)my insurance denied cancer treatment center of America, but the patient advocate gave me phone numbers to the national cancer institute and American cancer society. I'm just curious how to utilize those institutes for information. Have they helped anyone on here. 

    my husband and older children are being very supportive. I have a 20 year old daughter and a 15 year son plus my 2 year old little guy.

    Should I expect to too loose a lot of weight going through everything?

    How soon after surgery do they start rad or chemo?

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    Sailor123 said:

    Phrannie:
    I love your new

    Phrannie:

    I love your new picture.  You look so healthy and young.  Did you change your hair color?

    I would echo your words to the new girl, but caution her to avoid sugar.  I knew I would need to gain weight when diagnosed and I immediately started eating sees candy and doghnuts.  I was later told that was the worst thing I could have done.  I should have known better but, oh well!

    CONGRATULATIONS!  Almost three years.  You are home free.

    Shirley

    No Sailor, I didn't color my hair...

    but since I've been keeping it short, it looks darker (except all the grey of course).  Thanks for making me feel SO GOOD!!  Wrinkles are all still there, but I've gained 3 lbs, and pushed them out a little...LOL. 

    I'm still eating ice cream everyday....a little sugar isn't going to hurt anything....and if there's a way to pack in a whole lot of calores with just a few bites, it's ice cream!! Tongue Out 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    joy39 said:

    Thank you all so much for

    Thank you all so much for responding to my post I felt so alone in this. I know I'm not. It just feels like it. I promise not to google anymore and come to ya'll for advice. I was wondering why they wanted to take my lymph nodes if they weren't affected. I do feel that I'm being rushed by the drs I'm almost 40 and I know nothing good comes from rush decisions. I think I'm going to try and contact the Moffett cancer center in tampa it's atop ranked hospital. ( Thanks again Bill for the idea)my insurance denied cancer treatment center of America, but the patient advocate gave me phone numbers to the national cancer institute and American cancer society. I'm just curious how to utilize those institutes for information. Have they helped anyone on here. 

    my husband and older children are being very supportive. I have a 20 year old daughter and a 15 year son plus my 2 year old little guy.

    Should I expect to too loose a lot of weight going through everything?

    How soon after surgery do they start rad or chemo?

     

    questions

    Joy.

     

    Should I expect to too loose a lot of weight going through everything?

    Most of us do, for me about 47 pounds

     

    How soon after surgery do they start rad or chemo?

    Anywhere from a few weeks to few months, for me 1.5 months following surgery.

     

    Keep moving forward.

    Matt

  • Sailor123
    Sailor123 Member Posts: 97

    Welcome to the club

    nobody wants to join, Joy.  There is not a person here who wasn't scared silly when they first got here....not a single one!  Everything was normal just a week ago, then boom!  we find ourselves caught in the center of a word we never expected to hear....CANCER!!  I remember well.....but like you, I found this group before I started treatment....I asked hundreds of questions....I let everyone know how I was feeling.....and I found not only great information here, but so much support and kindness.  Also, the people here are so smart....they know things even the Drs. don't know on how to make this journey even more doable than it already is.  You're going to be alright. I might add....the first thing I did was drop Google searches, as per the advice I got from here....and right away my life became easier. 

    There is SO MUCH HOPE!!  You're young, you're Stage II, you have much to live for.....that's just the bottom line of hope, with much more hope to add on to it.  Treatment isn't a walk in the park....but you will see as others pop in and talk, that there are many, MANY here who have been around for a long time after getting this disease and gettign through it.  My Dr. told me up front that I'd get over this.....that something else will cause my demise somewhere down the road.....but it won't be this.  I had Stage III, Nasopharyngeal Carcinoma (NPC in the venacular).  No surgery, but I was told if my lymph nodes didn't go down during rads and chemo I'd get surgery when treatment was over.  I am now 2 1/2 years out of treatment....three years next month I got the diagnosis.   

    Pre surgery, eat all you can of whatever you want.....extra weight has now become your friend...the more fattening the better....how fun :).  Once treatment starts rules are drink, drink, drink....eat, eat, eat.....rest rest rest.  You're going to make it through this, and out the other side.....you will live to see your baby grow up!!  All done with a "one day at a time" attitude....you can do this!!

    There is at least one other person on here who went to Shands in Gainsville.....Krashpad....he doesn't post here often, but I see him a lot on Facebook.  I can introduce you if you want.

    If you stick close to the group, tho.....I can attest that you have found the best Head and Neck Cancer group on the internet....there are so many smart, smart people here.

    p

    Phrannie:
     
    Can you taste ice

    Phrannie:

     

    Can you taste ice cream?  I would eat it all day long if I could taste it.  Can you taste most things?  Hows your saliva production.  I've been getting accupuncture and its helping with both but ever slowly.  Have you had any dental issues?  Maybe I should have private messaged you.

    Shirley

  • wmc
    wmc Member Posts: 1,804
    joy39 said:

    Thank you all so much for

    Thank you all so much for responding to my post I felt so alone in this. I know I'm not. It just feels like it. I promise not to google anymore and come to ya'll for advice. I was wondering why they wanted to take my lymph nodes if they weren't affected. I do feel that I'm being rushed by the drs I'm almost 40 and I know nothing good comes from rush decisions. I think I'm going to try and contact the Moffett cancer center in tampa it's atop ranked hospital. ( Thanks again Bill for the idea)my insurance denied cancer treatment center of America, but the patient advocate gave me phone numbers to the national cancer institute and American cancer society. I'm just curious how to utilize those institutes for information. Have they helped anyone on here. 

    my husband and older children are being very supportive. I have a 20 year old daughter and a 15 year son plus my 2 year old little guy.

    Should I expect to too loose a lot of weight going through everything?

    How soon after surgery do they start rad or chemo?

     

    Why remove Lymph glands in neck...

    There is somewhere between 200 to 300 depending where you get the informatinn from. I had 86 total removed. 48 on my left and 38 on the righ side, none were swollen and all were checked and were clean. Mine was done as a precaution that if the cancer came back[ very small chance of returning] it would not be able to go and spread to my glands, because there gone. Just a precaution for me. Canser can spread through the blood or the lymph system. There is a side effect that my neck is sore and the muscles are tight but i'm safer that way. Remember mine was just above my vocal cords and my larynx had to be removed is also why my neck is sore. I was cut fron ear to ear, and only have a small scar on the left side. I never had radiation. When they were doing the surgery there was a patholigest their testing as they came out. That way they new I was clean. That is an advantage of having a tumor board. All done at one surgery. When I woke up I was in a regular room, never went to ICU. With all that and having to learn to talk and swallow, I was back full time at work where I have to use the phone and talk all day, in 10 weeks. You get the attitude you can and will beat anything they throw at you......And YOU WILL.

    Bill

  • MGC
    MGC Member Posts: 72 Member
    wmc said:

    Why remove Lymph glands in neck...

    There is somewhere between 200 to 300 depending where you get the informatinn from. I had 86 total removed. 48 on my left and 38 on the righ side, none were swollen and all were checked and were clean. Mine was done as a precaution that if the cancer came back[ very small chance of returning] it would not be able to go and spread to my glands, because there gone. Just a precaution for me. Canser can spread through the blood or the lymph system. There is a side effect that my neck is sore and the muscles are tight but i'm safer that way. Remember mine was just above my vocal cords and my larynx had to be removed is also why my neck is sore. I was cut fron ear to ear, and only have a small scar on the left side. I never had radiation. When they were doing the surgery there was a patholigest their testing as they came out. That way they new I was clean. That is an advantage of having a tumor board. All done at one surgery. When I woke up I was in a regular room, never went to ICU. With all that and having to learn to talk and swallow, I was back full time at work where I have to use the phone and talk all day, in 10 weeks. You get the attitude you can and will beat anything they throw at you......And YOU WILL.

    Bill

    Welcome to the board

    Rememeber everyone is different. I was originally diagnosed T4,N2c, then i went to Stanford like Bill (430 miles and worth it). They downgraded it to T3, N2b MO whatever that is. SCC right tonsil and BOT HPV+, multiple lymph nodes in neck and shoulder as well.  I had simultaneous chemo and radiation but no surgery at Stanford, stayed in the same Apt as Bill accross the street. I still question the no surgery but I don't doubt the doctors. It has been almost 5 years now NED. My Doctors and many others at Stanford are part of many on going studies about this and they said/claimed based on studies that the results for overal survivablility and re-occurrence were the same for me regardless of surgery. Those studies and many more are all there on the Stanford website. Check them out

    One thing for sure, there is a ton of great people on this board and great resources here as well that definatley make your journey better. I do not post much but I read a lot and this board is really really helpful.

     

    Mark

     

  • thennies61
    thennies61 Member Posts: 285
    Welcome and you have come to

    Welcome and you have come to the right place.Jan 29 of 2014 I had alittle over half of my tounge removed because of a tumor.They also took some lymph nodes but all was clear.Went though radition and that trial drug.They used some muscle from my thigh to rebuild the tounge.It hasn't been easy but it is very doable.I went to a speach and swallowing specialist and as everything is healing I have seen a denist about new teeth which means back to the specialist.But all in all evrything is going foreward.Just stay positive sometimes easier said then done but you will get better just let time take it's time.

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

     

    Welcome to the family here on CSN H&N, as you can see you are not alone and you already have many friends here that can give you help and support. We were all like you at one time so it is normal to feel the way you’re feeling. Just hand in there C happens to people every day, the good news is that you can beat it.

     

    Tim Hondo

  • phrannie51
    phrannie51 Member Posts: 4,716
    joy39 said:

    Thank you all so much for

    Thank you all so much for responding to my post I felt so alone in this. I know I'm not. It just feels like it. I promise not to google anymore and come to ya'll for advice. I was wondering why they wanted to take my lymph nodes if they weren't affected. I do feel that I'm being rushed by the drs I'm almost 40 and I know nothing good comes from rush decisions. I think I'm going to try and contact the Moffett cancer center in tampa it's atop ranked hospital. ( Thanks again Bill for the idea)my insurance denied cancer treatment center of America, but the patient advocate gave me phone numbers to the national cancer institute and American cancer society. I'm just curious how to utilize those institutes for information. Have they helped anyone on here. 

    my husband and older children are being very supportive. I have a 20 year old daughter and a 15 year son plus my 2 year old little guy.

    Should I expect to too loose a lot of weight going through everything?

    How soon after surgery do they start rad or chemo?

     

    You are not alone....

    we may be far away in distance, but in spirit and heart, we're right on the bus with you.   As you go through treatment, others will begin theirs....I found a lot of comraderie with people here going through at the same time I was going through it.

    I think it's a good idea to get another opinion from Moffett.....Lymph nodes carry cancer cells....and the most reactive ones are those that are closest to the tumor.  LOTS of people here have had a neck dissection....and from everything I've heard in the last 3 years, surgery is the easiest part of the treatment.  I can't exactly remember how long after surgery they start chemo and rads....seems to me it's about a month. 

    As for losing weight....I've only met a couple of people who didn't lose weight....or say only lost 5 lbs or something.  I figured I did good only losing 17 lbs (I started treatment at 97, and got down to 80 when it was all said and done).  It's not unheard of tho, for people to lose 50, 60, even 90 lbs during the treatment. So you do want to eat now, just to have some extra to lose.  They put a feeding tube in me before I started treatment....tho I didn't use it until rads were over....at that time it was the only way to get water and food into me....except what I forced myself to swallow on a daily basis. 

    Right now, just do what you have to do for this day.....get you appointments with Moffitt, etc....EAT....and do the same tomorrow.  This show is about to get on the road, and when that happens it's still "one day at a time"....and it's quite a ride....but like the rest of us, you'll get through it....and move on with your life.

    p