SCC at base of Tongue

Well unfortunately I was diagnosed with a marble size tumor on the base of my tongue (Squamous Cell Carcinoma) it has effected 3 Lymph nodes on the right side of my neck, which swelled up or I would have never known.  Going today for the first Doctors Appointment after diagnoses, Just wanted to say thanks for making this group, I have found a lot of info, I am still scared to death but at least I know I am not alone (unfortunately).  This same Cancer killed my mother on Feb 22, 2014 it grew a tumor out of her vaginal canal it was not pleasant to watch progress, I hope I have better luck with treatment.  I have high hopes I am a strong 46 year old 5'11 & 220lbs, just hate to see my family have to go through this with me, but nothing to do but look ahead with high hopes.

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Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hi dave and welcome although

    hi dave and welcome although i'm sorry you need to be here.  my condolenances for your mom.  this is a cruel disease.  i also lost my mom to cancer, 37 yrs ago.  i just want to let you know we will be here to help you make this journey and we'll answer any questions we can.  no question or topic is off limits here. 

    God bless you,

    dj

  • corleone
    corleone Member Posts: 312 Member
    Hello Dave

    I also was 46 years old when diagnosed, although for a different cancer (nasopharyngeal – behind the nose). Three years later, I am doing pretty well. Make sure you are seen by oncologists with experience, working at a big cancer center, makes a big difference in terms of treatment plan and outcome. Be prepared to take notes during meeting with doctors, and even better if someone can accompany you, to do that. As you move along with the treatment plan, feel free to ask questions on this forum; many went through treatment for the same cancer you have, and might be able to provide suggestions that doctors or nurses might know, but not necessarily share with you when needed.

  • ratface
    ratface Member Posts: 1,337 Member
    Textbook Case

    Hi Dave, you are pretty much the poster child for this disease, typical diagnosis with spread to one side of the nodes. They said mine was pencil eraser size.  You sound healthy otherwise. You will do fine. Welcome to the Boards, Lots of great stuff to read here that can help.All the best! 

  • dimpleworks
    dimpleworks Member Posts: 1
    Hi Dave -
    My brother has

    Hi Dave -

    My brother has finished treatment over a year ago - sounds very similar to your condition.  In my opinion, the only thing I wish we had done differently is going to a major cancer center for a treatment plan.  Please take the time to do that if you do not live in a major metropolitan area.  He is cancer free but still managing the effects of radiation on his jaw.  Best of luck to you!

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Hello Dave

    Well, as P-51 often says, welcome to the group that no one wants to join. You sound much like me nearly 11 years ago. Base of Tongue cancer with lymphnode involved. I will keep this short, you will get thru this with the help of your Doctors, Nurses, Family and Friends.

    Post your concerns here and someone that has traveled the road you are on now will reply.

    My Best to You and Everyone Here

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome to our little

    internet home....you have found a great place to ask questions, get tips and tricks for getting through treatment, and vent or just talk.  Everybody you hear from on this forum came in scared to death....that come with the territory of hearing the dreaded "c word".  Took me weeks to be able to put the word cancer and my name in the same sentence....they just didn't go together.  A lot of us didn't have a clue anything was amiss, until we got a lump on our necks....

    Treatment can be rough....but it's temporary.  I'm three years out at the end of this month, and my life is pretty much as normal as it ever was. 

    Stick close to this board, and understand that there is no question that is off limits. 

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

    Welcome Dave and sorry you need to be here. However, you won't find any place better. Marble is better than most are so that means it was found early. It is a rough road to go down, but many have been down it before and we will all help as we can. Mine was just above vocial cords 3cc x2.5 cc T3;N0; M0 and they thought it was a T4; N2 before surgery so I got lucky and it was not as bad as they thought. You might want to start putting on some extra pounds and drink lots of water and swallow all through treatment. Keep swallowing is very important as you can forget how to. Will add you to my prayer list and keep you and your family in my thoughts. You are not alone.

    Bill

  • hwt
    hwt Member Posts: 2,328 Member
    wmc said:

    Welcome to the H&N Group

    Welcome Dave and sorry you need to be here. However, you won't find any place better. Marble is better than most are so that means it was found early. It is a rough road to go down, but many have been down it before and we will all help as we can. Mine was just above vocial cords 3cc x2.5 cc T3;N0; M0 and they thought it was a T4; N2 before surgery so I got lucky and it was not as bad as they thought. You might want to start putting on some extra pounds and drink lots of water and swallow all through treatment. Keep swallowing is very important as you can forget how to. Will add you to my prayer list and keep you and your family in my thoughts. You are not alone.

    Bill

    Welcome Dave

    Sorry for the loss of your Mother. I lost my Mom last October. You can beat this! I will keep you in my prayers.

    Candi

  • MrsBD
    MrsBD Member Posts: 615 Member
    SCC BOT

    Welcome to the group. I had SCC, BOT which had spread to a lymph node on both sides of my neck. It's almost ten months since treatment ended and I feel pretty normal again. Treatment is tough, but we're tougher! Come here whenever you have questions.  We're here with advice, support, and prayers. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Welcome

    Hi Dave,

    Welcome to the H&N forum, so sorry you are here, but we have walked (metaphorically) in your shoes and can relate to your condition.

    There is a bunch to learn but you will catch on easy.  I am sure you have questions, so ask away.

    Don’t forget, check out the Superthread.

    Matt

  • Dave45042
    Dave45042 Member Posts: 17
    1st Dr. Appt

    The new Dr. canceled any surgery, he is doing a biopsy of the tumor and then Radiation and Chemo to try and fight it, if that doesn't work then surgery and more rediation and chemo, does that sound about right, its not a big cancer center, I live in the middle between Cincinnati and Dayton Ohio this Dr. is out of Cincinnati, should I seek a bigger place, travel would be a hardship & burden on my family, I feel I will be a big enough burden already.  Thank you for the great big welcome everyone

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Dave45042 said:

    1st Dr. Appt

    The new Dr. canceled any surgery, he is doing a biopsy of the tumor and then Radiation and Chemo to try and fight it, if that doesn't work then surgery and more rediation and chemo, does that sound about right, its not a big cancer center, I live in the middle between Cincinnati and Dayton Ohio this Dr. is out of Cincinnati, should I seek a bigger place, travel would be a hardship & burden on my family, I feel I will be a big enough burden already.  Thank you for the great big welcome everyone

    Options and locations

    Dave,

    As you read many of the posts, you will find that not all patients had the exact procedure done on them. Some of us had Surgery first, followed by Radiation and Chemo, some Surgery with only radiation to follow. Others had only Chemo and Radiation to treat their issues. Others had the Rad's and Chemo first, then they had Surgery. The end result is to rid the patient of the cancer.

    With that said, you as the patient should feel comfortable with your decision and how comfortable you are with your Doctor(s). As you posted, your new Doctor canceled any surgery and will schedule Chemo and Radiation as your treatment plan. Many here have done this and are doing just fine.

    I was given the same option, but in my mind, I wanted the tumor out completely and had the Surgery to remove it, and part of my tongue as I had Base of Tongue cancer. With my choice came some other issues that I deal with daily. I only had Radiation as the follow up  and Chemo was held as a back-up in the event I had reoccurance which did not happen.

    As another survivor posted many years ago after he visited 4 different Doctors and all had a different approach. He finally asked the last Doctor how come so many different ways? The Doctor gave him the example of a Baker, each have the same ingredients, they each add the ingredients at different times to get the end result of a baked cake.

    Do what suits your needs the best, my one neighbor was treated locally for tonsil cancer and he is an 18 year survivor. I traveled to the city which wasn't too awful far away because my local ENT knew the Surgeon and I am nearing my 11 year mark, both of us are fine. He had surgery followed by radiation only like I had.

    My Best to You and Everyone Here

  • Dave45042
    Dave45042 Member Posts: 17
    MarineE5 said:

    Options and locations

    Dave,

    As you read many of the posts, you will find that not all patients had the exact procedure done on them. Some of us had Surgery first, followed by Radiation and Chemo, some Surgery with only radiation to follow. Others had only Chemo and Radiation to treat their issues. Others had the Rad's and Chemo first, then they had Surgery. The end result is to rid the patient of the cancer.

    With that said, you as the patient should feel comfortable with your decision and how comfortable you are with your Doctor(s). As you posted, your new Doctor canceled any surgery and will schedule Chemo and Radiation as your treatment plan. Many here have done this and are doing just fine.

    I was given the same option, but in my mind, I wanted the tumor out completely and had the Surgery to remove it, and part of my tongue as I had Base of Tongue cancer. With my choice came some other issues that I deal with daily. I only had Radiation as the follow up  and Chemo was held as a back-up in the event I had reoccurance which did not happen.

    As another survivor posted many years ago after he visited 4 different Doctors and all had a different approach. He finally asked the last Doctor how come so many different ways? The Doctor gave him the example of a Baker, each have the same ingredients, they each add the ingredients at different times to get the end result of a baked cake.

    Do what suits your needs the best, my one neighbor was treated locally for tonsil cancer and he is an 18 year survivor. I traveled to the city which wasn't too awful far away because my local ENT knew the Surgeon and I am nearing my 11 year mark, both of us are fine. He had surgery followed by radiation only like I had.

    My Best to You and Everyone Here

    thanks

    Thanks for that info, I also want the tumor out of me, I will have to check on what options my Dr. will go for and if not satisfied find a new one.  As I first stated my mother had the radiation and chemo first and it didnt help, then they removed the tumor but it grew back within weeks.  I would have a better peice of mind with the tumor removed and then follow up treatments.

  • ditto1
    ditto1 Member Posts: 660
    Dave45042 said:

    thanks

    Thanks for that info, I also want the tumor out of me, I will have to check on what options my Dr. will go for and if not satisfied find a new one.  As I first stated my mother had the radiation and chemo first and it didnt help, then they removed the tumor but it grew back within weeks.  I would have a better peice of mind with the tumor removed and then follow up treatments.

    Hey Dave

    welcome to the site no one wants to need, but if needed is the greatest site to help you get thru this which you will.  Sorry about your mother.  I had Base of Tongue, Chemo 33 rads, no feeding tube, I was DX in March 2012.  As the others have said there is no place better than this site to get information, and as we all have learned stay away from DR. GOOGLE, most of the information is out dated and does not make sense or can just scare you.  The one thing I would tell you is do not over rush things, take your time and seek out you best options.  Myself and others were frustrated with what seemed like forever to get the process started.  For me it was about 60 days from being DX and to starting treatment.  In reality that is not unusual, so time is not your enemy at this point so discuss all your options with your team (I say team because many have the ENT, Radiologist, and Oncologist working as a team to plan out your treatment)  Either way it is a rough course to follow but as others have said doable and we will be here 24/7.

  • rhondap45042
    rhondap45042 Member Posts: 5
    MarineE5 said:

    Options and locations

    Dave,

    As you read many of the posts, you will find that not all patients had the exact procedure done on them. Some of us had Surgery first, followed by Radiation and Chemo, some Surgery with only radiation to follow. Others had only Chemo and Radiation to treat their issues. Others had the Rad's and Chemo first, then they had Surgery. The end result is to rid the patient of the cancer.

    With that said, you as the patient should feel comfortable with your decision and how comfortable you are with your Doctor(s). As you posted, your new Doctor canceled any surgery and will schedule Chemo and Radiation as your treatment plan. Many here have done this and are doing just fine.

    I was given the same option, but in my mind, I wanted the tumor out completely and had the Surgery to remove it, and part of my tongue as I had Base of Tongue cancer. With my choice came some other issues that I deal with daily. I only had Radiation as the follow up  and Chemo was held as a back-up in the event I had reoccurance which did not happen.

    As another survivor posted many years ago after he visited 4 different Doctors and all had a different approach. He finally asked the last Doctor how come so many different ways? The Doctor gave him the example of a Baker, each have the same ingredients, they each add the ingredients at different times to get the end result of a baked cake.

    Do what suits your needs the best, my one neighbor was treated locally for tonsil cancer and he is an 18 year survivor. I traveled to the city which wasn't too awful far away because my local ENT knew the Surgeon and I am nearing my 11 year mark, both of us are fine. He had surgery followed by radiation only like I had.

    My Best to You and Everyone Here

    Dave45042

    Marine,

     

       Can I ask what are the daily issues you face because of your decision?  I am Dave's wife and we want to get very educated and base our decision on knowledge.  The end result is we just want to Dave to be healthy but want to know the pros and cons of everything.

  • MarineE5
    MarineE5 Member Posts: 1,030 Member

    Dave45042

    Marine,

     

       Can I ask what are the daily issues you face because of your decision?  I am Dave's wife and we want to get very educated and base our decision on knowledge.  The end result is we just want to Dave to be healthy but want to know the pros and cons of everything.

    rhondap45042

    Hi,

    I just saw your post and we are about to eat, so I will reply tonight in a bit, but it will be thru the e-mail system here on this site. I type slow and it might get a little long as I sometimes ramble, but as I mentioned, I will reply tonight.

    My Best to Both of You and Everyone Here

  • rhondap45042
    rhondap45042 Member Posts: 5
    MarineE5 said:

    rhondap45042

    Hi,

    I just saw your post and we are about to eat, so I will reply tonight in a bit, but it will be thru the e-mail system here on this site. I type slow and it might get a little long as I sometimes ramble, but as I mentioned, I will reply tonight.

    My Best to Both of You and Everyone Here

    Pain Meds

    So apparently, pain is a big issue with Dave's throat.  Dr's do not readily give out pain pills.  Just wondered what you guys all get for pain?

  • KTeacher
    KTeacher Member Posts: 1,103

    Pain Meds

    So apparently, pain is a big issue with Dave's throat.  Dr's do not readily give out pain pills.  Just wondered what you guys all get for pain?

    Glad you joined

    Glad you joined our group also.  There will be times that you will need support.  You asked about pain meds.  I found that the cancer doctors had no problem giving prescriptions for pain and nausea meds.  For awhile my medicine area looked like a druggie!  I haven't heard of one person on the forum getting addicted.  When the time comes you just don't stop some meds, you have to get a smaller dose until you are off.  Pain meds play havoc with bowels, make sure he is taking a stool softener or you will have another problem to deal with.  Take care of yourself also, you won't be able to take care of your husband if you get sick.

  • MrsBD
    MrsBD Member Posts: 615 Member

    Pain Meds

    So apparently, pain is a big issue with Dave's throat.  Dr's do not readily give out pain pills.  Just wondered what you guys all get for pain?

    Pain Meds

    As the radiation therapy progresses, different side effects can cause pain. For mucositis, or mouth sores, many of us used a prescription rinse called Magic Mouthwash. I had a very sore throat and no PEG tube so liquid Hydrocodone and Fentanyl patches were prescribed to get me through the worst of it. I know one person who only took Tylenol. Every person's response to radiation is different and so is the tolerance for pain. It's important to stay on top of the pain so your husband can get the hydration and nutrition he needs to heal.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Dave45042 said:

    1st Dr. Appt

    The new Dr. canceled any surgery, he is doing a biopsy of the tumor and then Radiation and Chemo to try and fight it, if that doesn't work then surgery and more rediation and chemo, does that sound about right, its not a big cancer center, I live in the middle between Cincinnati and Dayton Ohio this Dr. is out of Cincinnati, should I seek a bigger place, travel would be a hardship & burden on my family, I feel I will be a big enough burden already.  Thank you for the great big welcome everyone

    hi dave.  i was treated at

    hi dave.  i was treated at the Barrett Center in cincinnati as i live in cinti.  when i had radiation, i had it done in a very small place as that is where i was refered.  i did not know about this site so therefore, i went throguh tx not knowing anything or that i had options.  i'm glad you will be more knowledgable as you take this journey.  if i can help you get through this, please let me know.  i will be praying for you and your family.

    God bless you,

    dj