diagnosis

hi

  i went to a ENT doc may 20, they did a scope up nose into throat , the nurse said it doesnt look like cancer ....

    i went back to see the doctor a week later he did the same , he said it looks like cancer , 

 so we scheduled a biopsy june 15 , all tests came back negative , so we scheduled another biopsy july 7 

he said he was going to go real deep this time , we get the results back negative again , he said damn it

 looks like cancer , so after 2 months of not knowing whats going on , and some high quality pain 

   he tells me to go to university of michigan hospital .... they look down my throat and say yep its cancer 

  they do a biopsy , 5 days later i get the results .... STAGE IV scc of the larynx .

     i cannot belive this other ENT missed this for over 2 months , and i dont belive it would be this advanced ,

      now time is crutial ! 

 

                take care thanks                          

Comments

  • DarcyS
    DarcyS Member Posts: 81 Member
    Not unusual

    Sorry to hear about your diagnosis.  Your story is not unusual.  My husband had several scopes, biopsies and all came back negative after a CT scan showed scc.  It wasn't until went to U of M and U of C two monghs later that he had a positive biopsy and they saw the tumor in his right piriform sinus during a scope.  His diagnosis was ssc of the piriform sinus stage iv with two lymphnodes involved.  T1N2bM0

    It is also not unusual to be diagnosed at stage IV with head and neck cancer.  I remember the feeling well of how could they have missed it and how much time was wasted but it sounds like you are in the right place now.  

    My husband is now almost 4 years post treatment and life is good. 

    This is an excellent site filled with caring and knowledgeable people who will help you through your journey.  

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    welcome to the club

    cooter,

    Now you know and the 2 month delay is more normal than we like to believe, but may not matter anyway.  Let’s just move along and take care of things, in a timely fashion.

    The first ENT did not get a positive biopsy, which is common.  He thought it looked like cancer and did recommend a 2nd opinion.  Some H&N members spend years trying to figure things out.

    I do not know about your cancer, but scc often takes years to present itself.  Don’t beat yourself up about the delay.  Instead, prepare!  Prepare to meet this head-on with the goal of winning.  It can be done.

    Try reading the superthread, it is time to get smart, we all had to do it.

    Time is crucial and so are you!

    Best of luck.

    Matt

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

     

    Sorry to hear that but sometime they do miss the target, the good part is that you know the truth now and can do something about it; and the best place is here on CSN. Also is always pays to have a second opinion.

     

     

     

    Welcome to our family here on CSN

     

    Tim

     

  • cooter
    cooter Member Posts: 12
    execellent

    thanks for your replys , i didnt have a very positive outlook on my condition , 

       the 2 months of not knowing made me numb ,

       after reading your replys i am in a better place !!!!!

      i know i can beat this , just like everyone here 

        thanks a million !!!!!!!

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    Positivity a Must

    Hi Cooter........ It sucks I know but you have an answer so now is the time to prepare.  Read the Superthread and past Posts.  Such a wealth of information.  Great group here, so ask, question, vent......you can do this!

  • RottiesMom
    RottiesMom Member Posts: 167
    Hi Cooter!

    First, welcome...this forum is full of warm, caring, loving, and knowledgeable people. I am grateful I found it!  I was diagnosed May 20 with SCC Stage IV tonsil cancer metastized to 2 lymph nodes  (T1N2bM0).  This was after 2 months of my doctor thinking it was a swollen lymph gland.  So it does happen.  My treatment was 3 cycles of chemo ( cisplatin ) 3 weeks apart and 35 radiation trestment.  I have 2 radiation treatments left and I am done.  Reading posts here and asking questions has helped me so much through this journey.  Drivingdaisy is correct.  Staying positive is a must!  You are in the right place!  You will beat this!!

    Joanne

  • cooter
    cooter Member Posts: 12
    edited August 2016 #8
    THANK YOU

    Everyone here is so awesome , thanks for the advice ....

      reading everybodys posts has helped alot , gaining knowledge , knowing what to expect !!

        im ready to fight the good fight !

           thank you 

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited August 2016 #9
    Larynx Cancer

    We were at our granddaughter's wedding when my husband told me he was having trouble with an on and off ear ache and some swallowing problems.  When we returned he went to the doctor and he said it was an ear infection and gave him drops to use but said if not better within a week to see an ENT.  He went to the ENT (one that we had used with our children) and when he came home he told me that our local ENT upfront said it was cancer but that he wanted a CT scan before doing a biopsy.  All this took place in a month's time period then another couple of weeks before treatment started.  My husband was diagnosed with larynx cancer Stage III SCC due to the size of the tumor.  PET scanned showed no spread.  He underwent 35 radiation and 3 chemo treatments (Cisplatin).  Wish we had gotten a second opinion from a head and neck specialist.  Treatment didn't work and he was referred to a specialist.  He then underwent surgery (9 months after diagnosis) and we were told up front that due to the radiation he might have a hard type healing but thankfully he healed without a problem.  There are several on here that have larynx cancer.  There is another site that gives good information on this type of cancer and that is Web Whispers. 

    Radiation and chemo treatment is hard and side effects are hard (we were told that head and neck radiation is the worse there is) but just remember everyone reacts differently to treatment.  Unfortunately a year after surgery my husband was diagnosed with a second primary at the cervical of his esophagus and then spread to his right lung.  Our specialist told us that it wasn't a spread from the larynx cancer and I have often wondered if it was due to the radiation.

    Wishing you peace and comfort

  • lornal
    lornal Member Posts: 428
    Missed

    As others have said, being diagnosed at stage 4 is not at all uncommon.

    I was diagnosed at stage 4 TWICE.  2007 & 2014.  And, I'm still here kicking & screaming.

    Tough treatment - but worth it. 

    My second was hypopharnx, and I had to have a laryngectomy.  Scary, live changing, survivable.

    Lorna

  • cooter
    cooter Member Posts: 12
    Ladylacy said:

    Larynx Cancer

    We were at our granddaughter's wedding when my husband told me he was having trouble with an on and off ear ache and some swallowing problems.  When we returned he went to the doctor and he said it was an ear infection and gave him drops to use but said if not better within a week to see an ENT.  He went to the ENT (one that we had used with our children) and when he came home he told me that our local ENT upfront said it was cancer but that he wanted a CT scan before doing a biopsy.  All this took place in a month's time period then another couple of weeks before treatment started.  My husband was diagnosed with larynx cancer Stage III SCC due to the size of the tumor.  PET scanned showed no spread.  He underwent 35 radiation and 3 chemo treatments (Cisplatin).  Wish we had gotten a second opinion from a head and neck specialist.  Treatment didn't work and he was referred to a specialist.  He then underwent surgery (9 months after diagnosis) and we were told up front that due to the radiation he might have a hard type healing but thankfully he healed without a problem.  There are several on here that have larynx cancer.  There is another site that gives good information on this type of cancer and that is Web Whispers. 

    Radiation and chemo treatment is hard and side effects are hard (we were told that head and neck radiation is the worse there is) but just remember everyone reacts differently to treatment.  Unfortunately a year after surgery my husband was diagnosed with a second primary at the cervical of his esophagus and then spread to his right lung.  Our specialist told us that it wasn't a spread from the larynx cancer and I have often wondered if it was due to the radiation.

    Wishing you peace and comfort

    thanks ladylacy

    i will check out web whispers 

      my best wishes to you and family

  • cooter
    cooter Member Posts: 12
    edited August 2016 #12
    lornal said:

    Missed

    As others have said, being diagnosed at stage 4 is not at all uncommon.

    I was diagnosed at stage 4 TWICE.  2007 & 2014.  And, I'm still here kicking & screaming.

    Tough treatment - but worth it. 

    My second was hypopharnx, and I had to have a laryngectomy.  Scary, live changing, survivable.

    Lorna

    lornal

    thanks for the info 

      im ready for this fight 

       stay strong!!!!

  • Fritz
    Fritz Member Posts: 106
    edited August 2016 #13
    Stage IV

    Cooter:

    I too was diagnosed with Stage IVA tonsil cancer on March 1, 2016. Unfortunately, our cancers tend to show symptons late in the game.  I noticed slight irritation in the back of my throat in mid December with strep-like white patches appearing in late December. By mid February, a lymph node on that side of the neck began to grow. Diagnosed with Stage IV on March 1. Like many others on this site, late Stage III or Stage IV is very common as very few symptons arise in the earlier stages.

    Hang in there though.  Even at these late stages, this type cancer is very curable. I had surgery to remove tonsils, part of tongue base and parts of soft palate. I just completed chemo and radiation treatments on July 15, 2016. Waiting on future good news now on post PET in early October.

    Good luck to you on your upcoming journey and continue to use this site for advice as it will serve you well.

    Freddie

  • cooter
    cooter Member Posts: 12
    Fritz said:

    Stage IV

    Cooter:

    I too was diagnosed with Stage IVA tonsil cancer on March 1, 2016. Unfortunately, our cancers tend to show symptons late in the game.  I noticed slight irritation in the back of my throat in mid December with strep-like white patches appearing in late December. By mid February, a lymph node on that side of the neck began to grow. Diagnosed with Stage IV on March 1. Like many others on this site, late Stage III or Stage IV is very common as very few symptons arise in the earlier stages.

    Hang in there though.  Even at these late stages, this type cancer is very curable. I had surgery to remove tonsils, part of tongue base and parts of soft palate. I just completed chemo and radiation treatments on July 15, 2016. Waiting on future good news now on post PET in early October.

    Good luck to you on your upcoming journey and continue to use this site for advice as it will serve you well.

    Freddie

    freddie

    best of luck to you 

      thanks for the info 

     

  • robswife87
    robswife87 Member Posts: 209
    Cooter

    Try not to worry. Most Oral type cancers are diagnosed as, what you can say as late. Little to no signs until it spreads to lymph nodes and even then cancer is usually not the first thought. Many go through several rounds of antibiotics before being referred out. By the time you get to the specialist, and then a scope and biopsy and then to the tumor board and meetings with all your doctors and then possible surgery then the whole plan is then laid out. It takes what seems like forever, but it all works out. 

    We were a little luckier and faster than most as a personal friend is the head nurse in the Otolarygoloy Oncology dept where we needed to be, so she put the rush on. But everyone else here is usually a couple of months before the real treatmetn begins.

    My husband had the lymph node swelling for 10 months before he decided to do anything about it and over 3 years out and he is NED. 

    You have cancer, now hurry up and wait.

    Sandy

  • Barbaraek
    Barbaraek Member Posts: 626
    edited August 2016 #16
    Cooter, add me to the list

    of those who are wishing you strength on your journey to beat cancer. As you have discovered...this is a great site with lots of info and support. Visit as much as you need to, and know that we are all keeping you in our prayers.

    Barbara