Advice, Help, Newbe

JGavin
JGavin Member Posts: 14
in Head and Neck Cancer #1

Hi.  I am new here.  It's been a rough two months.  I had a tumor removed from my thigh, came back benign and I was elated.  In the time it took to have the tumor removed from my thigh, I found two masses on the BACK of my neck, and once everything was done and settled with the thigh tumor, I went and had the neck masses looked into.  After tests, tests, and more tests and countless doctor visits, the two masses in the back of my neck were removed and came back benign.  What brings me here today is that when I saw an ENT about the two neck masses, he had made a joke and said, "If I were you, I would be focusing on the large lymph node you have in the front of your neck."  I was so caught up in the two masses on the back of the neck that I didnt even notice the enlarged lymph node on the front left side of my neck.  I feel like with all the problems I have had I am at my wits end with this lymph node.  I also noticed that my left tonsil is larger than the right and it appears in a lobular form, where the right tonsil is round.  So to sum up, a large left lymph node, and a large left lobular tonsil. My fear is that this is HPV SCC, or possibly lymphoma.  I am a 28 year old female.  Married for 7 years and with two young daughters.  The lymph node and tonsil do not hurt.  But my left inner ear does only when I swallow a d has for a while now.  I do not know my odds of getting HPV SCC.  Everything I read focused on males 30 to 50 years of age.  But as far as younger women, I know it is possible, I am just trying to find out the likelyhood and what my chances are and the prognosis.  Is there anyone here who has been in a long remission with the cancer?  A lot of the research I find say 90% 2 year remission, but a lot of studies don't go beyond that.  What about 5 years, 10 years, so on.  I guess because this cancer is still new that is why there is still a lot to learn.  I am not diagnosed yet, but I am thinking it is a likely possiblilty for me.  It's now been well over a month and the lymph node is only growing, with no sign of any cold infection and is non tender.  My tonsil has not gotten bigger, but like I said, is very noticably larger than the right tonsil and lobular in shape.  I went to see another ENT and he said he would do a tonsilectomy to "ease me mind" my fear is that if this is a HPV SCC would there be a need to eush in for an additional surgery to get any remaining tissue?  Since this ENT is going into it as nothing more than an tonsilectomy, I am concerned the proceedure will not be done as it should be when cancer is suspected.  It also seems that a lot of ENT's are really not familair with the HPV SCC.  Any insight would be much appreciaited.  Thank you for your time.  

JGavin

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Comments

  • meaganb
    meaganb Member Posts: 244 Member
    #2
    First of all, its not xancer

    First of all, its not xancer until they say its cancer. I was diagnosed with ACC last year at 27. I also am married with a young child. My ENT thought the tumor was benign. He only removed it b/c it was cauding ear pain. Lo and behold, it was cancer, but for our age group that is definitely the exception & not the norm. I went through radiation after surgery & am cancer free a year later. I would definitely find an ENT that will take your concerns seriously. Having surgery to remove lymph nodes is no walk in the park but if it is cancer, its certainly better to know than to just sit and wonder. Maybe they can biopsy the lymph node before doing full on surgery to remove it or tonsils. I have also heard that recovery from a tonsilectomy us not easy.Find a doctor you trust and move forward from there. Chances are its probably nothing but better to be safe than sorry. Also, I'm wondering why the first ENT mentioned the swollen lymph nodes but didn't do anything about it?

  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    It aint cancer until they say it is cancer


    that is our motto here. if you are not confident in this docotor, get another opinion. look for an ENT thatis knowledgeable in head and neck cancers. maybe call a cancer center close by and ask them for recommendations. I pray that this is a minor problem as the others were.

    Debbie

  • JGavin
    JGavin Member Posts: 14
    #4
    meaganb said:

    First of all, its not xancer

    First of all, its not xancer until they say its cancer. I was diagnosed with ACC last year at 27. I also am married with a young child. My ENT thought the tumor was benign. He only removed it b/c it was cauding ear pain. Lo and behold, it was cancer, but for our age group that is definitely the exception & not the norm. I went through radiation after surgery & am cancer free a year later. I would definitely find an ENT that will take your concerns seriously. Having surgery to remove lymph nodes is no walk in the park but if it is cancer, its certainly better to know than to just sit and wonder. Maybe they can biopsy the lymph node before doing full on surgery to remove it or tonsils. I have also heard that recovery from a tonsilectomy us not easy.Find a doctor you trust and move forward from there. Chances are its probably nothing but better to be safe than sorry. Also, I'm wondering why the first ENT mentioned the swollen lymph nodes but didn't do anything about it?

    Thank you for your response!

    Thank you thank you thank you for your response!  I have asked myself that question about the first ENT for the last month.  As a result, I refuse to go back to him.  The ENT who is performing the tonsilectomy was one that I had chosen because he was younger and a lot of research seems to report that it's a lot of the younger ENT's who are familiar with the HPV SCC because it is a "newer" cancer.  But this ENT is very hung up on the fact that I am a female, and only 28.  I am seeing another ENT today, but I am not sure what answers I will get from the visit.  I know it's not cancer until they say it is, I am just so hung up on it.  What is ACC?  Was your tumor visable just from looking?   I will keep you in my thoughts and prayers, as I do all people who have cancer.  

  • hwt
    hwt Member Posts: 2,328 Member
    #5
    jim and i said:

    It aint cancer until they say it is cancer


    that is our motto here. if you are not confident in this docotor, get another opinion. look for an ENT thatis knowledgeable in head and neck cancers. maybe call a cancer center close by and ask them for recommendations. I pray that this is a minor problem as the others were.

    Debbie

    Express your concerns

    Express your concerns to the doctor and if you don't get satisfactory answers then get another opinion.

    Prayers that you do not have cancer.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    First & Foremost

    Welcome...

    I think you are putting the horse way ahead of the cart.... You haven't been biopsied or diagnosed as of yet.... More than likely you are asking questions and putting yourself through a bunch of unwarranted anxiety and worry...

    Yes, women get HPV+ cancer as much as the men, in my opinion and expereince here over the years..., and that's more than two..., actually at four, with many here out in the decades post treatment.

    For an ENT to say that he'll take your tonsils out to ease your mind is rediculous to me, I'd drop him.

    Go to a reputable facility and ENT with throat cancer expereince, which in itself seems dumb to have to say as any established ENT should have that expereince.

    Survival rates and cure rates are actually very high these days..., much of the interent specifics aren't very accurate or updated I should say..., but they are getting there.

    So my advice, get yourself a good ENT, and go from there...

    What area do you live..., there are many hear that might be able to give you an ENT or facility recommendation...

    Best,

    John

  • JGavin
    JGavin Member Posts: 14
    #7
    Skiffin16 said:

    First & Foremost

    Welcome...

    I think you are putting the horse way ahead of the cart.... You haven't been biopsied or diagnosed as of yet.... More than likely you are asking questions and putting yourself through a bunch of unwarranted anxiety and worry...

    Yes, women get HPV+ cancer as much as the men, in my opinion and expereince here over the years..., and that's more than two..., actually at four, with many here out in the decades post treatment.

    For an ENT to say that he'll take your tonsils out to ease your mind is rediculous to me, I'd drop him.

    Go to a reputable facility and ENT with throat cancer expereince, which in itself seems dumb to have to say as any established ENT should have that expereince.

    Survival rates and cure rates are actually very high these days..., much of the interent specifics aren't very accurate or updated I should say..., but they are getting there.

    So my advice, get yourself a good ENT, and go from there...

    What area do you live..., there are many hear that might be able to give you an ENT or facility recommendation...

    Best,

    John

    Hi John

    Thank you, John!!!  I was hoping you would respond to me!  I have followed your posts for the last few weeks on this forum while trying to research this cancer.  Today I was just at my wits end and started an account to see if I could get more info, as you say a lot of the research that is out there is not up to date.  And yes, the ENT is performing the tonsiectomy to ease my mind.  He also said that that is the only way to know for sure if there is an underlying cause for the larger tonsil.  But like I said, my concern lies with how the surgery will be performed.  

  • JGavin
    JGavin Member Posts: 14
    #8
    Skiffin16 said:

    First & Foremost

    Welcome...

    I think you are putting the horse way ahead of the cart.... You haven't been biopsied or diagnosed as of yet.... More than likely you are asking questions and putting yourself through a bunch of unwarranted anxiety and worry...

    Yes, women get HPV+ cancer as much as the men, in my opinion and expereince here over the years..., and that's more than two..., actually at four, with many here out in the decades post treatment.

    For an ENT to say that he'll take your tonsils out to ease your mind is rediculous to me, I'd drop him.

    Go to a reputable facility and ENT with throat cancer expereince, which in itself seems dumb to have to say as any established ENT should have that expereince.

    Survival rates and cure rates are actually very high these days..., much of the interent specifics aren't very accurate or updated I should say..., but they are getting there.

    So my advice, get yourself a good ENT, and go from there...

    What area do you live..., there are many hear that might be able to give you an ENT or facility recommendation...

    Best,

    John

    Hi John

    Thank you, John!!!  I was hoping you would respond to me!  I have followed your posts for the last few weeks on this forum while trying to research this cancer.  Today I was just at my wits end and started an account to see if I could get more info, as you say a lot of the research that is out there is not up to date.  And yes, the ENT is performing the tonsiectomy to ease my mind.  He also said that that is the only way to know for sure if there is an underlying cause for the larger tonsil.  But like I said, my concern lies with how the surgery will be performed.  

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #9
    JGavin,
    i too am concerned

    JGavin,

    i too am concerned why first ENT did nothing.  Go to a teaching hospital in your area i am in the Philadelphia area and went to University of Pennsylvania and saw Dr. Weinstein(personality sucks, but Genius) i was 28 newly married female wanting to have children!  I was dx with NPC(nasopharyngealcarcinoma) stage 3, it was a SCC type viral cancer.  Today i am cancer free and 42(today!) so the answer as to whether or not it curable YES it is.  Stay off internet and get to good Doc instead of dxing yourself, i did that for years about other things and caused tons of wasted time worrying about what turned out tobe nothing!

     

    keep us updated and God Bless!

      Rachel 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    JGavin said:

    Hi John

    Thank you, John!!!  I was hoping you would respond to me!  I have followed your posts for the last few weeks on this forum while trying to research this cancer.  Today I was just at my wits end and started an account to see if I could get more info, as you say a lot of the research that is out there is not up to date.  And yes, the ENT is performing the tonsiectomy to ease my mind.  He also said that that is the only way to know for sure if there is an underlying cause for the larger tonsil.  But like I said, my concern lies with how the surgery will be performed.  

    Tonsilectomy

    I'd presume that he could take a biopsy without taking the tonsils out, FNA or some other mode...

    But, as for the tonsils coming out..., it's not really that bad for the first few days.., you still are limited to soft foods, runny mashed potatoes & gravy, soft mac n cheese, etc...

    It's about the 3 - 10 days or so that has the most pain and more intense..., but they'll give you liquid meds to help.

    All of that crap about ice cream wasn't true with me, LOL... I couldn't stand anything too hot, or cold during recovery.

    Also, he should be able to tell you immediately if it's cancer..., or at least mine did.., he knew before I woke from surgery. It did take a few weeks to get results back as for HPV+.

    Anyways, I didn't mean to come across harsh..., just don't get ahead on yourself as for it being cancer.

    More than likely at your age, the odds of it being at least HPV+ are pretty low, I'd presume.

    Best,

    John

  • JGavin
    JGavin Member Posts: 14
    #11
    Skiffin16 said:

    First & Foremost

    Welcome...

    I think you are putting the horse way ahead of the cart.... You haven't been biopsied or diagnosed as of yet.... More than likely you are asking questions and putting yourself through a bunch of unwarranted anxiety and worry...

    Yes, women get HPV+ cancer as much as the men, in my opinion and expereince here over the years..., and that's more than two..., actually at four, with many here out in the decades post treatment.

    For an ENT to say that he'll take your tonsils out to ease your mind is rediculous to me, I'd drop him.

    Go to a reputable facility and ENT with throat cancer expereince, which in itself seems dumb to have to say as any established ENT should have that expereince.

    Survival rates and cure rates are actually very high these days..., much of the interent specifics aren't very accurate or updated I should say..., but they are getting there.

    So my advice, get yourself a good ENT, and go from there...

    What area do you live..., there are many hear that might be able to give you an ENT or facility recommendation...

    Best,

    John

    Oh and John, I am in

    Oh and John, I am in cleveland Ohio.  And I am seeing the ENT's at the Clevland Clinic.  Where are you?  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    rachel12yrsuv said:

    JGavin,
    i too am concerned

    JGavin,

    i too am concerned why first ENT did nothing.  Go to a teaching hospital in your area i am in the Philadelphia area and went to University of Pennsylvania and saw Dr. Weinstein(personality sucks, but Genius) i was 28 newly married female wanting to have children!  I was dx with NPC(nasopharyngealcarcinoma) stage 3, it was a SCC type viral cancer.  Today i am cancer free and 42(today!) so the answer as to whether or not it curable YES it is.  Stay off internet and get to good Doc instead of dxing yourself, i did that for years about other things and caused tons of wasted time worrying about what turned out tobe nothing!

     

    keep us updated and God Bless!

      Rachel 

    There You Go...

    LOL, Rach, there you go blowing my presumption...

    Although, I'll still stick to it, someone in their 20's have a very low percentage of having HPV+ derived H&N Cancer...

    ~JG

  • JGavin
    JGavin Member Posts: 14
    #13
    rachel12yrsuv said:

    JGavin,
    i too am concerned

    JGavin,

    i too am concerned why first ENT did nothing.  Go to a teaching hospital in your area i am in the Philadelphia area and went to University of Pennsylvania and saw Dr. Weinstein(personality sucks, but Genius) i was 28 newly married female wanting to have children!  I was dx with NPC(nasopharyngealcarcinoma) stage 3, it was a SCC type viral cancer.  Today i am cancer free and 42(today!) so the answer as to whether or not it curable YES it is.  Stay off internet and get to good Doc instead of dxing yourself, i did that for years about other things and caused tons of wasted time worrying about what turned out tobe nothing!

     

    keep us updated and God Bless!

      Rachel 

    Happy Birthday!

    Rachel, HAPPY BIRTHDAY!  And God Bless you!   Thank you for the recommendation.  The first ENT was very short with me.  I felt like I was bothering him.  My husband and I were just trying to get answers about the two new tumors in my neck.  And the ENT was very dismissive.  His comment about the lymph node in the front of my neck was very tongue and cheek.  And yes, he did nothing, didn't even look into my mouth, so he never saw the enlarged tonsil.  The second ENT who is removing the tonsils did see the larger tonsil.  But he is so focused on my age and gender and therefore not at all concerned.  Maybe I am over concerned.  The lymph node is large.  noticable just by looking at my neck.  The tonsil on that same side is also larger.  I have also had intermitten hearing loss, but I have had that for going on 7 years and have had MRI's come back clean.  They say the hearing loss sensations are nothing to worry about.  Of course now I am wondering if it had anything to do with a tonsil tumor.  Not to mention the slight pain only when I swallow in my left ear.  

    I will keep you posted!

    Happy Birthday,

    JGavin

  • JGavin
    JGavin Member Posts: 14
    #14
    JGavin said:

    Happy Birthday!

    Rachel, HAPPY BIRTHDAY!  And God Bless you!   Thank you for the recommendation.  The first ENT was very short with me.  I felt like I was bothering him.  My husband and I were just trying to get answers about the two new tumors in my neck.  And the ENT was very dismissive.  His comment about the lymph node in the front of my neck was very tongue and cheek.  And yes, he did nothing, didn't even look into my mouth, so he never saw the enlarged tonsil.  The second ENT who is removing the tonsils did see the larger tonsil.  But he is so focused on my age and gender and therefore not at all concerned.  Maybe I am over concerned.  The lymph node is large.  noticable just by looking at my neck.  The tonsil on that same side is also larger.  I have also had intermitten hearing loss, but I have had that for going on 7 years and have had MRI's come back clean.  They say the hearing loss sensations are nothing to worry about.  Of course now I am wondering if it had anything to do with a tonsil tumor.  Not to mention the slight pain only when I swallow in my left ear.  

    I will keep you posted!

    Happy Birthday,

    JGavin

    I also wanted to add that I

    I also wanted to add that I have never smoked, and can probably count on one hand how many times I have drank.  That was a lot of my reasoning behind this being HPV derived.  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
    JGavin said:

    I also wanted to add that I

    I also wanted to add that I have never smoked, and can probably count on one hand how many times I have drank.  That was a lot of my reasoning behind this being HPV derived.  

    Cleeeeeeveland

    Howard the Duck..., LOL.

    Someone from that area will probably reply to you..., I know there are a few that highly endorse The James in Columbus... Myself I am living in Central Florida..., though I do have relatives in the Cleveland area, as I was born in Mansfield, and grew up in Mount Vernon, LOL...

    Your ENT that's taking the tonsils out may be up to speed on HPV... I'd just ask him  of his expereince with HPV and H&N Cancer... He should be able to tell you immediately if it is cancer, once they are removed.

    My ENT scoped me, sent me for a CT scan, had me come back to his office all the same day..., which was the first I had ever seen him. He told me that he suspected throat cancer, and more than likely as I wasn't a smoker HPV dervived..., that was on Friday.

    The following Monday, he too the tonsils out, did a quick biopsy, determined I was STGIII SCC Tonsil Cancer. He sent the tissue of for further testing, a few weeks later, results confirmed HPV+...

    I live in a small town, but he did his Med School at Harvard, and his intern and resident at John Hopkins... Plus he writes several white papers and participates in many studies... He also has since performed a Syptoplasty on me..., he's awesome.

    Back to your tonsils..., have you had any history...? My daughter whom is around your age had... She had to have her tonsils removed a few years ago... But hers would inflame and have big white spots on them...

    JG

  • CherieLW
    CherieLW Member Posts: 472
    #16
    I'm pretty new to this site

    I'm pretty new to this site and I know that a lot of people here are valuable and helpful when it comes to things like this. I second getting another doc to speak with so you can get another opinion. Best of luck! I'll be praying thngs are okay!

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #17
    Skiffin16 said:

    There You Go...

    LOL, Rach, there you go blowing my presumption...

    Although, I'll still stick to it, someone in their 20's have a very low percentage of having HPV+ derived H&N Cancer...

    ~JG

    According to drs. Then HPV

    According to drs. Then HPV wasnt even known i dont believe in 2000, they blamed it on the EBV virus i never had, i always blaned on chicken pox, who cares right, its been 12 yrs and still here gighting no matter what caused tgat hell! Lol

    love ya John,

    Rachel

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #18
    finding out

    JGavin,

    You are correct to have concerns, but figuring out the exact diagnosis is paramount.  No need to scare yourself any more than necessary.  Best to find an ENT you like and is good and move forward.

    Best

    Matt

  • JGavin
    JGavin Member Posts: 14
    #19
    CivilMatt said:

    finding out

    JGavin,

    You are correct to have concerns, but figuring out the exact diagnosis is paramount.  No need to scare yourself any more than necessary.  Best to find an ENT you like and is good and move forward.

    Best

    Matt

    Update

    I went to see a second ENT.  Not sure if I am more scared or not.  He looked an my tonsils and while he could see that one is larger than the other, he said it is not "significantly larger", so on that end he was not "overly concerned".  However, he is concerned about the lymph nodes.  He is putting in a request with the ENT who is performing the tonsilectomy to also remove the lymph nodes in my neck during that surgery.  This has me a little anxious.  Not over the surgery itself, but over that fact that this ENT feels it is necessary.  Until the 12th on June, which is my surgery consultation I wont have anymore information.  And the tonsilectomy and lymph node removal will not happen until the 17th.  I know that is but two weeks away, but as I am sure anyone can imagine, especially on this site, how painful the wait time is.  So for now my only choice is to hang tight.  I know that it is always best to start with the least invasive plan in these situations, I am am grateful that I wont be doing a lot of watching and waiting.  Part of me wonders if that is why so many people are diagnosed in the later stages?  Because the doctors prefer to do the watch a weight for 6 months or so.  Thank you all for you responses, kind words, support, and prayers.  

     

    JGavin

  • ET@cowboy
    ET@cowboy Member Posts: 15
    #20
    JGavin said:

    Update

    I went to see a second ENT.  Not sure if I am more scared or not.  He looked an my tonsils and while he could see that one is larger than the other, he said it is not "significantly larger", so on that end he was not "overly concerned".  However, he is concerned about the lymph nodes.  He is putting in a request with the ENT who is performing the tonsilectomy to also remove the lymph nodes in my neck during that surgery.  This has me a little anxious.  Not over the surgery itself, but over that fact that this ENT feels it is necessary.  Until the 12th on June, which is my surgery consultation I wont have anymore information.  And the tonsilectomy and lymph node removal will not happen until the 17th.  I know that is but two weeks away, but as I am sure anyone can imagine, especially on this site, how painful the wait time is.  So for now my only choice is to hang tight.  I know that it is always best to start with the least invasive plan in these situations, I am am grateful that I wont be doing a lot of watching and waiting.  Part of me wonders if that is why so many people are diagnosed in the later stages?  Because the doctors prefer to do the watch a weight for 6 months or so.  Thank you all for you responses, kind words, support, and prayers.  

     

    JGavin

    SCC

    Hey Jgavin, I was dx with SCC cancer in a lymph node in the neck. Ended up the original (primary) tumor was in my tonsil. I would have a biopsy of the node prior to surgery on my tonsil.  Just a thought, but a less invasive surgery would be prudent. They new rage in tonsil cancer surgery is Trans Oral Robotic surgery (TORS).  The healing and pain results are better. The pain is less  intense. I would be worried more about a doctor who is operating without a proper diagnosis. If it is not cancer then there is no need to do surgery. Good luck and maybe this will be nothing.

  • meaganb
    meaganb Member Posts: 244 Member
    #21
    JGavin said:

    Thank you for your response!

    Thank you thank you thank you for your response!  I have asked myself that question about the first ENT for the last month.  As a result, I refuse to go back to him.  The ENT who is performing the tonsilectomy was one that I had chosen because he was younger and a lot of research seems to report that it's a lot of the younger ENT's who are familiar with the HPV SCC because it is a "newer" cancer.  But this ENT is very hung up on the fact that I am a female, and only 28.  I am seeing another ENT today, but I am not sure what answers I will get from the visit.  I know it's not cancer until they say it is, I am just so hung up on it.  What is ACC?  Was your tumor visable just from looking?   I will keep you in my thoughts and prayers, as I do all people who have cancer.  

    ACC stands for Adenoid Cystic

    ACC stands for Adenoid Cystic Carcinoma. Its primarily a salivary gland tumor. It wss not visible from the outside but could be felt in my mouth & under my jaw. The tumor was about 2cmx2cmx3cm when it was removed. Surgeon also took 47 lymph nodes which were negative. I had to see several different Drs before anyone took me seriously. I had this awful earache & one ENT tried to refer me to a neurologist. I know its frustrating but keep pushing until you have an answer but also try not to stress. More than likely you are just fine! Keep us updated!

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