New, but I've been through this before

Katie10485
Katie10485 Member Posts: 41
in Head and Neck Cancer #1

Hello,

ve been reasing sing this forum for the past two weeks and thought it was time to Introduce myself.  Four years ago, my father in law passed away fron oral cancer.  He had a tumor the size of his fist in his jaw and for months thought he was dealing with TMJ.   Less than a head after diagnosis, 12 hour surgery to remove his jaw, chemo and radiation, he passed away.  If was a horriffic and traumatizing event for our family as it happened just two weeks before me and my husband got married.

 

now it seems i am about to go through this again, this time with my own dad.  Dad noticed a small limo on the side of his neck.  Wenr to see an ENT who did biopsy and concluded it was SCC.  Tonsils removed and showed no cancer. PET and CT scans show cancer nowhere else in body, except the one lymph node.  Yesterday he had a neck dissection and doctors removed all lymph nodes on that side of neck and also did a robot surgical procedure on base of tongue Where they "scrape" base of tongue.  Doctor feels high probability that is primary site.  Won't know if it's HPV until results come back (praying it is).  He got a secnod opinion at MSKCC and both doctors recommended same procedure and follow up radiation.  Both doctors said prognosis is "very good" and MSKCC had quoted greater than 75% chance of reaching 5 yrs with no recurrence.  Wound up doing surgery at morristown medical center in nj Yesterday as surgein was highly recommended by MSKCC and other oral cancer experts we know morristown doctor was apparently a pioneer in the robot surgery.

 

feeling very overwhelmed and scared knowing how bad this can be from my father in laws experience. I am do worried about my dad and just praying for this not to be the end for him.  He is 63 and has a lot more life to live.

Comments

  • Katie10485
    Katie10485 Member Posts: 41
    #2
    Sorry for all the typos... On

    Sorry for all the typos... On iPhone!

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    Try not to stress yourself out if you can

    Katie,

    I am sorry you are here to start with, but your Dad has taken all the right steps in battling this beast. One thing that many of us here pass on to others is this, don't read into all the Data that is out there, much of it is old.

    I looked at it this way, the only number I was concerned about was the number 1, (ME) I know it seems a bit selfish, but that is the way I battled this. One step at a time, and followed the recommendations of my Surgeon and Radiation Oncologist.

    I had Base of Tongue cancer 10 yrs  ago, non robotic. This is my anniversary of the Surgery this week. Part of my tongue was removed, radical neck disection followed by 6 weeks of radiation that went a little longer due to treatments over the Holidays and machines breaking down.

    I am a bit older than your Dad, so he will get through this. The recovery period is slow as we need to measure our improvements in weeks, not days, but we improve.

    My Best to You, Your Dad and Everyone Here

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Katie....glad you introduced yourself....

    welcome to this great forum! 

    I'm sure you were traumatized by your father-in-law's oral cancer, and his ultimate demise.....however, your dad's cancer and your father-in-laws cancer sound a world apart to me.  It sounds like your dad is catching it way earlier, or at least he's gotten in to see  Dr. way earlier....and didn't wait months to see if the lump would go away.  What they are proposing sounds like the same treatment most of us went through.....and came out the other side and continued on.  My Dr. didn't give out stats, but he did tell me that my cancer probably wasn't going to be what will kill me in the end.  You'll see, if you stay close to this board, that there are many MANY of us survivors. 

    Stick close to us, ask any and all questions.....we answer everything......

    p

     

  • Katie10485
    Katie10485 Member Posts: 41
    #5
    MarineE5 said:

    Try not to stress yourself out if you can

    Katie,

    I am sorry you are here to start with, but your Dad has taken all the right steps in battling this beast. One thing that many of us here pass on to others is this, don't read into all the Data that is out there, much of it is old.

    I looked at it this way, the only number I was concerned about was the number 1, (ME) I know it seems a bit selfish, but that is the way I battled this. One step at a time, and followed the recommendations of my Surgeon and Radiation Oncologist.

    I had Base of Tongue cancer 10 yrs  ago, non robotic. This is my anniversary of the Surgery this week. Part of my tongue was removed, radical neck disection followed by 6 weeks of radiation that went a little longer due to treatments over the Holidays and machines breaking down.

    I am a bit older than your Dad, so he will get through this. The recovery period is slow as we need to measure our improvements in weeks, not days, but we improve.

    My Best to You, Your Dad and Everyone Here

    Thanks marine!

    Thank you.  You are right he can get through this!

  • Katie10485
    Katie10485 Member Posts: 41
    #6
    phrannie51 said:

    Katie....glad you introduced yourself....

    welcome to this great forum! 

    I'm sure you were traumatized by your father-in-law's oral cancer, and his ultimate demise.....however, your dad's cancer and your father-in-laws cancer sound a world apart to me.  It sounds like your dad is catching it way earlier, or at least he's gotten in to see  Dr. way earlier....and didn't wait months to see if the lump would go away.  What they are proposing sounds like the same treatment most of us went through.....and came out the other side and continued on.  My Dr. didn't give out stats, but he did tell me that my cancer probably wasn't going to be what will kill me in the end.  You'll see, if you stay close to this board, that there are many MANY of us survivors. 

    Stick close to us, ask any and all questions.....we answer everything......

    p

     

    Thanks

    Phrannie- you are right they are different cases but it is hard not to draw comparisons.  My father in law passed away this time of year and went through his surgery this time of year so it is reliving a bad case of déjà Vu.  The doctors have said this was caught early, although I think this is stage 4 due to lymph node involvement.  I am trying hard to stay positive but it is so hard when I have these bad memories!  I go through phases of confidence to phases of doubt and worry.  I have re read the survivor posts on this forum a lot to keep me positive.   There are many inspiring stories on here.  

  • hwt
    hwt Member Posts: 2,328 Member
    #7
    Katie10485 said:

    Thanks

    Phrannie- you are right they are different cases but it is hard not to draw comparisons.  My father in law passed away this time of year and went through his surgery this time of year so it is reliving a bad case of déjà Vu.  The doctors have said this was caught early, although I think this is stage 4 due to lymph node involvement.  I am trying hard to stay positive but it is so hard when I have these bad memories!  I go through phases of confidence to phases of doubt and worry.  I have re read the survivor posts on this forum a lot to keep me positive.   There are many inspiring stories on here.  

    Katie

    Sorry you had the need to find us. Lots of optimism here. I had mandible cancer with lymph node involvement, like your father in law nearly 3 years ago and am here to speak of it. I believe God has a plan for each of us. Take it one day at a time. My journey has not always been easy and continues. Just had second surgery but last PET clean!  Family has been my biggest blessing.

    Candi 3x survivor

  • Katie10485
    Katie10485 Member Posts: 41
    #8
    hwt said:

    Katie

    Sorry you had the need to find us. Lots of optimism here. I had mandible cancer with lymph node involvement, like your father in law nearly 3 years ago and am here to speak of it. I believe God has a plan for each of us. Take it one day at a time. My journey has not always been easy and continues. Just had second surgery but last PET clean!  Family has been my biggest blessing.

    Candi 3x survivor

    Candi,

    I know what you have gone through then, and that is not easy at all.  God bless you for everything you have been through!

     

    i guess my remaining question to all of you experts- is SCC as my father has it beatable?  curable?  Should i be optimistic or what should i prepare for?

     

    thank you for all your help.

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    Katie10485 said:

    Candi,

    I know what you have gone through then, and that is not easy at all.  God bless you for everything you have been through!

     

    i guess my remaining question to all of you experts- is SCC as my father has it beatable?  curable?  Should i be optimistic or what should i prepare for?

     

    thank you for all your help.

    Yes

    It is beatable and curable

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #10
    welcome

    Katie,

    Welcome to the H&N forum, where we are the most bearable and curable group, anytime of the year.

    Except for fleeting thoughts of my demise, I never dwelt on the negative.  This is a rough enough road without seeing the bad aspects and then concentrating on them.  I prefer to tell you it is very doable and knowing that the bad you may see is short term with better days ahead.

    Repeat after me ‘this is not the end”

    Peace,

    Matt

  • Katie10485
    Katie10485 Member Posts: 41
    #11
    CivilMatt said:

    welcome

    Katie,

    Welcome to the H&N forum, where we are the most bearable and curable group, anytime of the year.

    Except for fleeting thoughts of my demise, I never dwelt on the negative.  This is a rough enough road without seeing the bad aspects and then concentrating on them.  I prefer to tell you it is very doable and knowing that the bad you may see is short term with better days ahead.

    Repeat after me ‘this is not the end”

    Peace,

    Matt

    Thanks Matt!

    Matt thank you!!  As my dad said before he left for surgery yesterday:  "don't worry.  Good things will happen."  I am trying, trying, trying...

  • wmc
    wmc Member Posts: 1,804
    #12
    Welcome to the H&N

    Welcome to the H&N Group and also sorry you need to be here. It is a wonderful group and like they say, open 24/7. Mine was stage 3 of the larynx SCC with no HPV. Had neck dissesion on both sides and took 86 glands out, all clear just a precaution. AS for you Father, yes it is beatable. It can be a rough road but it is doable and so many have and won. 

    Write your's or your Fathers questions down and hand them to the doctor. The doctor will say something and you will lose all train of thought. It is Ok to record on your phone as well. If you have questions just ask and someone will be able to explain it. If you get scared, which is normal, just come and vent. Writing it down seems to help and it is better to be able to ask those who have been their and do understand what you are feeling.  You both will survive this and you will get support here. We'll add you both uor prayer list.

    Bill

  • Katie10485
    Katie10485 Member Posts: 41
    #13
    wmc said:

    Welcome to the H&N

    Welcome to the H&N Group and also sorry you need to be here. It is a wonderful group and like they say, open 24/7. Mine was stage 3 of the larynx SCC with no HPV. Had neck dissesion on both sides and took 86 glands out, all clear just a precaution. AS for you Father, yes it is beatable. It can be a rough road but it is doable and so many have and won. 

    Write your's or your Fathers questions down and hand them to the doctor. The doctor will say something and you will lose all train of thought. It is Ok to record on your phone as well. If you have questions just ask and someone will be able to explain it. If you get scared, which is normal, just come and vent. Writing it down seems to help and it is better to be able to ask those who have been their and do understand what you are feeling.  You both will survive this and you will get support here. We'll add you both uor prayer list.

    Bill

    thanks Bill

    Bill, thanks for your prayers and words of encouragement.  my mom has been going to all appointments and she is good about taking notes.  When I think of questions, i write them down so i can give my parents one list of questions I want to have asked.  Our next step is now wait for results of the surgery to see extent and confirm if base of tongue was primary site, and if HPV positive. 

  • denistd
    denistd Member Posts: 597
    #14
    SCC

    Hi Katie, I had SCC of the throat, stage 3, my latest check up on the throat was July 3rd of this year. Met with the ENT who said " Okay, it's been 5 years ago you had throat cancer and as far as I am concerned your throat cancer is cured, I don't need to see you again unless there is a problem" he said that and I thought it was pretty cool, not sure if cured is the word to use, but I'll take it. Denis

  • Katie10485
    Katie10485 Member Posts: 41
    #15
    denistd said:

    SCC

    Hi Katie, I had SCC of the throat, stage 3, my latest check up on the throat was July 3rd of this year. Met with the ENT who said " Okay, it's been 5 years ago you had throat cancer and as far as I am concerned your throat cancer is cured, I don't need to see you again unless there is a problem" he said that and I thought it was pretty cool, not sure if cured is the word to use, but I'll take it. Denis

    Congrats

    Denis, wow congrats on 5 years!! Thats amazing and I hope my dad will be in the same place as you 5 years from now.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    Hi Katie

    Wow you have been through a lot in dealing with your Father in law and now your own Dad. As a dad I want to let you know keep loving him no matter the outcome. My time was up in 2006 with a 3rd recurring but I am still here, why I don’t know, maybe it was all the prayers of my friends and family. Be strong and be there when he needs you, like most of us dads we will never tell you we need you some how you need to read it in our face. I hope it is OK for me to keep you both in my prayers as for me prayer is the miracle of my life. Welcome to CSN H&N

    Tim Hondo    

  • Sunshine60
    Sunshine60 Member Posts: 81
    #17
    unknown primary

    Hi Katie,

    My husband was dx with SCC stage 3 last year- with an unknown primary.  He also found a hard lump in his neck, was dx and had removed along with 28 other lymph nodes.  All negative. Took out his tonsils several wks later, negative. BOT/HPV- negative.   So, the doctors at the cancer center said, "we're  done chasing the primary, time for tx."   We are 14 months past his last tx, which was 35 radiation sessions to one side of the neck, no chemo and he continues to be negative for any cancer. He is followed every 3 months by our ENT oncologist and his Radiation Oncologist, scoped every time.  His CAT scan was negative as well.  While he has some lasting effects from the radiation ( radiation damage inside throat) he overall does well.  We get anxious before his appts, but in the end, we both know we have no control over the future. We simply apply our beliefs and faith each day that all will be ok.

    While I don't post very much, I come to this site every week.  It is consoling to me, and always gives me a sense of belonging to a group that has been there and continues to thrive despite their horrible experiences.    You are not alone, someone will always catch you here. :)

    Blessings coming your way!

    Shelley

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #18
    katie, welcome to our club

    katie, welcome to our club where we hate to see new members..lol.  i'm so sorry about your father in law.  it sounds like his cancer was found very late for the tumor to be so huge.  it also sounds like they caught your dad's much earlier, great news.  your dad will get thru this.  he has a rough ride ahead of him, but there are MANY of us who have traveled that road and we are still here to tell our stories.  I had stage 3 cancer of the larynx.  At present, I am 2.5 yrs cancer free.  you must stay positive so your dad can stay positive.  a positive attitude is needed to get thru treatment.  come here with all your questions and concerns, we will do our best to answer them.  you're also welcome to come here to vent, cry, celebrate and anything else you may feel.  also, if your dad wants to join, we'd love to have him too.  hang in there katie and know that your dad WILL MAKE IT.  let us know how he does thru tx and know that we will be on the sidelines cheering him on!!

    God bless,

    dj

  • Katie10485
    Katie10485 Member Posts: 41
    #19
    Thank you

    Thank you everyone.  Your prayers and positive comments mean everything to me.  This week we will know the pathology results of the surgery and hopefully there will be some good news.

  • wmc
    wmc Member Posts: 1,804
    #20
    Katie10485 said:

    Thank you

    Thank you everyone.  Your prayers and positive comments mean everything to me.  This week we will know the pathology results of the surgery and hopefully there will be some good news.

    Please let us know...........

    Hopping for good results, but please let us all know how he is doing, we all care.

    Fingers crossed and still praying.

    Bill

  • Katie10485
    Katie10485 Member Posts: 41
    #21
    wmc said:

    Please let us know...........

    Hopping for good results, but please let us all know how he is doing, we all care.

    Fingers crossed and still praying.

    Bill

    thank you so much, Bill!  I

    thank you so much, Bill!  I will keep you all updated.  Stitches out Thursday and hopefully we know more then.

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