Squamous cell carcinoma of base of tongue also involving lymph nodes

Options
tkred5
tkred5 Member Posts: 16
My brother was diagnosed a week ago with squamous cell carcinoma of the base of the tongue (primary site) and also has spread to lymph nodes on both sides os the neck. He's a non-smoker (always has been). Information on the Internet is conflicting with regards to treatment and survival rates. Just looking for accurate and hopefully optimistic information. I'm scared-- he's my big brother and I don't want to lose him. He has appointment with oncologist this week as well as a PET scan. Staying positive, optimistic and keeping it together, but really starting to freak out on the inside.
«1

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    google scary

    tkred5,

    Welcome to the H&N forum, so sorry you find yourself here.

    I was stage IVa, scc, base of tongue with lymph node and hpv+ and after surgery, rads and Erbitux I am still ticking, 2y3m post treatments.

    It is a scary place to be f or your brother, but there are more survival stories everyday.

    You may want to skim  the superthread for information.

    Good luck, your brother should be alright (soon).

    Matt

  • tkred5
    tkred5 Member Posts: 16
    Options
    CivilMatt said:

    google scary

    tkred5,

    Welcome to the H&N forum, so sorry you find yourself here.

    I was stage IVa, scc, base of tongue with lymph node and hpv+ and after surgery, rads and Erbitux I am still ticking, 2y3m post treatments.

    It is a scary place to be f or your brother, but there are more survival stories everyday.

    You may want to skim  the superthread for information.

    Good luck, your brother should be alright (soon).

    Matt

    Matt, thank you so much. It
    Matt, thank you so much. It is the success stories I am looking for. What is a super thread and how do I get to it?
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    tkred5 said:

    Matt, thank you so much. It
    Matt, thank you so much. It is the success stories I am looking for. What is a super thread and how do I get to it?

    superthread

    top of the page.

    currently, right above your thread

  • wmc
    wmc Member Posts: 1,804
    Options
    Sorry to hear this.

    Welcome to the group no one wants be at. But it is the best suport group you will find.

    Mine was larnyx cancer stage 3 SCC, so I will let the outhers advise and answer BOT cancer, but survival is really pretty good. I would sugest reading the superthread at the begining of this. Also, go to a major haopital that has Tumor boards. Go to the best hospital you can for treatment, it is worth it. Hrer is a list:

    http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

    Best of luck and let your brother know we will be praying for you both. Be strong it is very hard on the caregivers but it is doable.

    WMC  10.13

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    Options
    Base of Tongue cancer

    Good Day tkred5,

    Sorry to read that you are here on behalf of your brother, welcome to the club nobody wants to be in.

    As mentioned already, this is beatable. It is hard to not google for information once you hear the words-cancer, I've done the same thing in the past. After my treatments and surgery, I found this site. One person suggested that we not believe everything we read as allot of the Data is outdated.

    I found my cancer in 2004 when I placed my hand under my chin one morning. Many of us have some sort of a side affect from the surgery or treatments, usually they are manageable. There are many survivors that visit here and will be able to answer your questions as your brother travels the road we have been down. So, you are getting actual information verses someone reading it and passing it on.

    SASH that visits here is roughly 15 years out of treatment and there are others here longer then that. Many people move on from this site as the combination of surgery and followup treatments are different then when they had their's.

    My Best to Both of You  and Everyone Here

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Options
    tkred5, my cancer was

    tkred5, my cancer was different so can't advise but wanted to say, "Welcome" and i'm sorry you need to be here.  many here will be able to help you.  we will all be here for you and help you as your brother goes down this road.  let your brother know this is a good place for questions, venting, encouragement, celebrating, crying, whatever one is feeling at any given time.  maybe he will want to join and get in on all the fun....lol.  stay positive and have hope and faith.  your brother will survive this just as so many of us have.  it will be a little rough at times, but he will do it.  please let us know how the Pet scan comes out and the tx plan the docs come up with.  keeping you and your brother in my prayers.

    God bless you,

    dj

  • tkred5
    tkred5 Member Posts: 16
    Options

    tkred5, my cancer was

    tkred5, my cancer was different so can't advise but wanted to say, "Welcome" and i'm sorry you need to be here.  many here will be able to help you.  we will all be here for you and help you as your brother goes down this road.  let your brother know this is a good place for questions, venting, encouragement, celebrating, crying, whatever one is feeling at any given time.  maybe he will want to join and get in on all the fun....lol.  stay positive and have hope and faith.  your brother will survive this just as so many of us have.  it will be a little rough at times, but he will do it.  please let us know how the Pet scan comes out and the tx plan the docs come up with.  keeping you and your brother in my prayers.

    God bless you,

    dj

    Thank you all so much for
    Thank you all so much for your comments. It gives me hope knowing there are many who have beat this. I have seen Sash's comments in other threads. He's a character :) Will advise on pet scan and tx as we find results.
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    Welcome to the club nobody

    wants to join.  You've stumbled into the best forum on the internet.....YEAH!  The folks here are smart, informative, and supportive....they are also a positive bunch Smile.....most everybody has been through treatment, or are going through it now.  Your brother will be alright.  This side of the tunnel is very scary....so much unknown out there to get through.   It takes a while for a person to be able to put their own name into a sentence along with the word cancer, and have it "go together".....

    Your brother has a lot of hustle and bustle yet to go before the treatment actually starts.....he's going to be very busy with proddings, pokings, look-see's, discussions.....different Drs. etc etc. 

    I'm just about two years out, and here I am, too......there are lots of survivors on this board.  I was told right from the git-go to stay off of Google.....and I took that advice to heart (still do).....

  • hwt
    hwt Member Posts: 2,328 Member
    Options

    Welcome to the club nobody

    wants to join.  You've stumbled into the best forum on the internet.....YEAH!  The folks here are smart, informative, and supportive....they are also a positive bunch Smile.....most everybody has been through treatment, or are going through it now.  Your brother will be alright.  This side of the tunnel is very scary....so much unknown out there to get through.   It takes a while for a person to be able to put their own name into a sentence along with the word cancer, and have it "go together".....

    Your brother has a lot of hustle and bustle yet to go before the treatment actually starts.....he's going to be very busy with proddings, pokings, look-see's, discussions.....different Drs. etc etc. 

    I'm just about two years out, and here I am, too......there are lots of survivors on this board.  I was told right from the git-go to stay off of Google.....and I took that advice to heart (still do).....

    Welcome

    Sorry you had the need to find us. Plenty of BOT survivors here. Personally, mine was lower jaw. My advice is to take it as it comes and deal with it. Agree with Phrannie to avoid the Inernet. 

    God Bless,

    Candi

  • cureitall66
    cureitall66 Member Posts: 913
    Options
    Welcome....

    Welcome! I have a loved one that was dx Aug 2012 with Stage IV, SCC BOT, 2 lymph nodes involved, HPV+(your sibling will likely be tested for this), and non-smoker.  He was dx Aug 2012 and did 35 rads and 7 wks chemo (once a week on chemo).  His tx ended Nov 2012 (end).  He has been out from tx 19 months. The tx was tough, but doable.  Today, he is able to do just about everything he did before.  Swallowing and taste are back at about 95%, breads are not easy for swallowing.  He keeps a water bottle at his side 24/7 as he experiences a lot of dryness.  

    You will find this forum very helpful.  If your brother doesn't have any interest of joining, then maybe you could be his "go between" for questions and answers.  There are plenty of folks here that can help him with just about anything.  Reviewing the Superthread is very helpful, I would encourage you to read through it.  Also, one of the things he will probably want to do is get stocked up on some Ensure or Boost to keep his calorie consumption up.  He may end up with a feeding tube that most of the folks here needed.  His throat will likely get swollen about 4-5 wks into tx and he will not enjoy eating and drinking as he once did. Make sure he keeps plenty of water during tx so he does not get dehydrated.  Also, drinking/swallowing is deeply encouraged to keep those swallowing muscles used.  IF he does not use them he may LOSE that ability.  This is very important, so be sure to pass it onto him.  He will likely get radiation burns from the tx and the nurses may prescibe a burn cream called Silver Sulfadiazine and works wonders.  It helps with the pain and healing.

    He will do just fine.  There are plenty of folks here to lend a hand day or night.  You will find many long time survivors (15-20 yr) that pop in and out on here to help others out. And you will find folks that are 5-6 yrs out and of course, newbies that have the tx fresh in their heads as to what they did.  So, with this variety, you will get the needed support you'll need.

    What a wonderful thing for a sibling to step out there and get information for a brother that you love so dearly....and wanting to help.  This forum will give great comfort for you and him, so stick around, you will be glad you did.

    Ask away....

    God Bless,

    ~C

  • jim and i
    jim and i Member Posts: 1,788 Member
    Options
    Praying for your brother and

    Praying for your brother and family. This is one of the hardest things you will go through but doable. You have come to the right place for support, encouragement, prayers and advice. Maybe your brother will sign on too.

     

    Debbie

  • tkred5
    tkred5 Member Posts: 16
    Options
    jim and i said:

    Praying for your brother and

    Praying for your brother and family. This is one of the hardest things you will go through but doable. You have come to the right place for support, encouragement, prayers and advice. Maybe your brother will sign on too.

     

    Debbie

    We are at the Dr. This

    We are at the Dr. This morning And he has a endoscope later today. They said he has to go see a dentist. ?????  I read on here that the treatment can effect the teeth. I'm trying hard to get my mom on this site (she also has cancer--bladder). She did not take the news about the dentist too well and I am not sure if my brother was aware the procedure could effect his teeth. Does anyone know if they will pull teeth before or after he starts treatment?  Will update as we find things out today.  Also, I think my brother (we'll just call him Ajax because that's his favorit futbol team) would truly benefit from this group. You are all so kind and knowledgeable, but I don't know how to go about convincing him to get on here. Any suggestions?  

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    Options
    tkred5 said:

    We are at the Dr. This

    We are at the Dr. This morning And he has a endoscope later today. They said he has to go see a dentist. ?????  I read on here that the treatment can effect the teeth. I'm trying hard to get my mom on this site (she also has cancer--bladder). She did not take the news about the dentist too well and I am not sure if my brother was aware the procedure could effect his teeth. Does anyone know if they will pull teeth before or after he starts treatment?  Will update as we find things out today.  Also, I think my brother (we'll just call him Ajax because that's his favorit futbol team) would truly benefit from this group. You are all so kind and knowledgeable, but I don't know how to go about convincing him to get on here. Any suggestions?  

    Condition of Teeth before treatments

    tkred5,

    The short answer to your question about seeing a Dentist prior to Radiation treatments is to remove any borderline teeth prior to the RAD's. If any teeth need to be removed, it is best done before the RAD's as our DNA chances from the Radiation and the healing process is much longer and we need to be in a Hyperbaric chamber for many dives per-say in order for the gums and bone to heal.

    I saw the Cancer Team Dentist prior to my treatments. He stated that my teeth at the time were borderline, all of them. So he asked me if I wanted to keep them or remove them. I chose to keep them but I am locked into doing Flouride Treatments daily, which your brother will also if he keeps his teeth.

    The main thing here is what condition his teeth are in at the moment, the flouride treatments are just an extra step each day.

    My treatments ended roughly 9 1/2 yrs ago and I still have all my teeth that I had prior to treatments.

    My Best to You, Your Brother, Mother, & Everyone Here

  • hwt
    hwt Member Posts: 2,328 Member
    Options
    tkred5 said:

    We are at the Dr. This

    We are at the Dr. This morning And he has a endoscope later today. They said he has to go see a dentist. ?????  I read on here that the treatment can effect the teeth. I'm trying hard to get my mom on this site (she also has cancer--bladder). She did not take the news about the dentist too well and I am not sure if my brother was aware the procedure could effect his teeth. Does anyone know if they will pull teeth before or after he starts treatment?  Will update as we find things out today.  Also, I think my brother (we'll just call him Ajax because that's his favorit futbol team) would truly benefit from this group. You are all so kind and knowledgeable, but I don't know how to go about convincing him to get on here. Any suggestions?  

    tkred5

    Teeth can become an issue with radiation. If Ajax has any unstable teeth, they will need to be extracted before tx. If he has a good set of teeth, they may suggest floride trays to keep them as strong as possible. Once the jaw bone has been radiated, some/not all have dental issues. They like to address existing dental issues beforehand. After radiation, if a tooth goes bad he may need to undergo hyperbaric oxygen tx before a dentist will do an extraction. The pretreatment dental exam is routine and intended to prevent problems down the road.

    Ajax and your Mom will need to do things on their own terms. You can tell them you found a good site that they might find helpful, it's people that have been through or are going through the exact same thing. My experience has been many compasionate helpful people here. So many more advantages to being positive. we've made the journey and know it can be difficult but doable. 

    If Ajax does not want to participate, please continue to ask questions on his behalf.  We have several active caregivers that post.

    Candi 

  • KTeacher
    KTeacher Member Posts: 1,103
    Options
    I wish

    I wish that I had found this site before my first treatment in 2010.  So helpful to meet people going through much the same treatments, helpful hints and encouragement.  Thank you for being proactive for your brother.  Yes, a dentist needs to be seen before treatment, anything that needs to be taken care of needs to be done before treatment begins.  Read the Superthread at the top of the topics, so much information for before during and after treatment.  Football or soccer!  If you are in the UK, we could have Guzzle show up at the door in uniform (he just completed treatment and is amazing in his recovery).

  • gsaddler123
    gsaddler123 Member Posts: 1
    Options
    SCC BOT

    tkred5,

    You have come to the right place. I am a year+ out of treatment and I spent much time here perusing for information during treatment and recovery. Your brother has a tough journey ahead of him but it is very doable.  Support of family and friends I found to be very invaluable. There are many success stories within this site and elsewhere that give reason to be optimistic.

    I kept a blog to keep family and friends updated and they in turn, supplied posts of encourgaement. Very helpful. The blog is at garyscancerblog.wordpress.com.  Treatment and recovery will vary by person, but the blog will give you and your brother an idea of what I went through and what he may expect.

     

    Be informed. Be optimistic. Beat this thing.

     

    Gary

  • bones821
    bones821 Member Posts: 7
    Options

    SCC BOT

    tkred5,

    You have come to the right place. I am a year+ out of treatment and I spent much time here perusing for information during treatment and recovery. Your brother has a tough journey ahead of him but it is very doable.  Support of family and friends I found to be very invaluable. There are many success stories within this site and elsewhere that give reason to be optimistic.

    I kept a blog to keep family and friends updated and they in turn, supplied posts of encourgaement. Very helpful. The blog is at garyscancerblog.wordpress.com.  Treatment and recovery will vary by person, but the blog will give you and your brother an idea of what I went through and what he may expect.

     

    Be informed. Be optimistic. Beat this thing.

     

    Gary

    Yes, this is survivable

    You have my best wishes as you start your treatments.  This type of cancer was also my diagnosis and I was told it was " survivable, curable, and it's gonna get rough."  Truer words were never spoken.  Can I pass along two bits of info?  1.  Do what the Drs. tell you to do.  They've seen it before and they want you to survive and thrive. 2.   Getting a feeding tube sounds scary but it may be the smartest move my oncologist insisted upon.  Some but not many can go through treatment w/o a tube but most will do much better with one. He'll need calories, nourishment, vitamins, etc. and when swallowing becomes (almost) unbearable the tube will be a life saver.  It was for me.  God Bless, stay positive, and never, ever give up.

  • tkred5
    tkred5 Member Posts: 16
    Options
    KTeacher said:

    I wish

    I wish that I had found this site before my first treatment in 2010.  So helpful to meet people going through much the same treatments, helpful hints and encouragement.  Thank you for being proactive for your brother.  Yes, a dentist needs to be seen before treatment, anything that needs to be taken care of needs to be done before treatment begins.  Read the Superthread at the top of the topics, so much information for before during and after treatment.  Football or soccer!  If you are in the UK, we could have Guzzle show up at the door in uniform (he just completed treatment and is amazing in his recovery).

    Who does Guzzle play for?

    Who does Guzzle play for?

  • KTeacher
    KTeacher Member Posts: 1,103
    Options
    tkred5 said:

    Who does Guzzle play for?

    Who does Guzzle play for?

    Police

    He is a police officer and a big soccer (football) fan.

     

  • tkred5
    tkred5 Member Posts: 16
    Options
    Update

    Update- preliminary diagnosis is stage 4A Oropharyngeal squamous cell carcinoma hpv+ with T2 BOT primary and N2C secondary. Dr. Is confident that it has not spread out of the head and neck area, but won't know for sure until pet scan. Having endoscope and biopsy of primary now And will see dentist next week. Preliminary Tx is 33-35 Tx of IMRT radiation (5 days per week) with Cisplatnin chemo once a week. Dr. Gave 80% chance of successful management of primary and secondary without surgery. Outside possibility of node surgery post Tx.  Dr. Said it was not going to be easy, but as each of you have already said, it is doable. I am full of hope and with the information i am gathering from each of you, preparing myself to help coach him through his Tx.  Still hoping I can get him to check out this site.