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Base of Tongue Symptoms

wellington90
Posts: 20
Joined: Sep 2013

Hello,

What was everyone's symptoms as far as your BOT cancer was concerned?  Did anyone have tongue pain or any kind of pain with this or was it just noticed by a swollen lymph node?  Any long time survivors on here?  If so, which treatments did you choose?

 

Thank you

phrannie51's picture
phrannie51
Posts: 3727
Joined: Mar 2012

I had NPC, not BOT....so can't help with symptoms....but there are many survivors here who had BOT....they will fill you in on the symptoms. 

I can tell you that you have found the best group on the internet....knowledgeable, smart, kind, and....humorous....  Not a better bunch of folks on the internet. 

p

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

have u been diagnosed or just experiencing what u think r symptoms?  i hope it is nothing.  there r several bot patients here who will be able to help you.  let us know how it turns out.  saying a prayer that all will b ok.

dj

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

One of my husband's cancer was BOT. Initially, he had no tongue symptoms, only swollen neck lymph nodes. BOT was determined through biopsy after ENT discovered black spot on back of tongue during exam. PET revealed lymph, BOT, Nasopharyngeal, plus second different cancer in lung. His was NOT A TYPICAL CASE for treatment as he had many other medical problems. After many delays, the lung rad was done first as that cancer was more aggressive. He lost his ability to swallow and had a PEG. His treatment plan was to have chemo & then begin H&N rad concurrently. His poor body was too beat up and he did not tolerate the chemo. Unfortunately, the outcome was not good.

I repeat, his case was not typical & I did not post to scare you, only to say that there were no tongue symptoms in the beginning. As Phrannie said, there are MANY survivors here that will give you more info.

Luv,

Wolfen

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

Yes, I had BOT cancer in 1998.  No symptoms at all.  It presented with a single rock-hard lump in a lymph gland.  I had a neck dissection for the nodes, and radiation for the BOT cancer.  Surgery was  not an option ffor the primary, as it was too close to my swallowing mechanism.  Do you have a confirmed diagnosis of BOT cancer?

 

Pat

Truman's Dad
Posts: 1
Joined: Sep 2013

I've visited this board several times over the last three years, but this is my first time posting. During this period, I've really grown to appreciate the genuine concern shared by all of the board members. 

I was diagnosed with squamous cell March 2010 and began treatment (6 Chemo/Cisplatin & 35 Radiation treatments) in April. My last treatment was June 14, 2010. Funny how you remember that date. 

Most recent pet scan was June 15, 2012 and it was clear. Funny how you remember that date as well.

I really wanted to respond to Wellington 90's post regarding symptoms. I had a sore throat that never went away and lymph node inflamation in neck. Lastly, there was a gnawing feeling that something just wasn't right. I went to primary care doc and received antibiotics. No improvement, so I called ENT who also happened to be a personal friend. He ordered pet scan and biopsy and subsequently found the primary tumor. From there, he orchestrated my care plan with the oncology docs.

Although I had the upmost faith in my ENT and oncology docs, I did get a second opinion from head and neck doc at Vanderbilt, who recommended same plan of care.    

I hope that this helps.

yensid683
Posts: 227
Joined: Apr 2012

SCC BOT, stage IVa, no symptoms really, my first was an altered sense of taste, sweet had a bitter/metalic taste.  Fast forward a couple of months and I had a sore throat with lymph nodes, my ENT snaked a flexible camera through my nose and told me I had a tumor on the base of my tongue.

1 week later I had a punch biopsy of the tongue and left oraphraryngeal wall (felt like my tonsils had been reinstalled and then chopped out) and it confirmed the diagnosis.

Pet scan showed lots of involvment, but no spread beyond the neck, round of induction chemo, (kidney failure) so a change to IMRT with weekly chemo.  Feeding tube, infusion port and all the typical side effects with loss of saliva, loss of taste and killer sore throat, but now some 15 months out of treatment and I"m largely back to normal, saliva is not what it was but continues to improve.

I hope things turn out well for you

 

CivilMatt's picture
CivilMatt
Posts: 2959
Joined: May 2012

Wellington,

I am currently a survivor of BOT and of the H&N forum.  My first clue (that got my attention) was a swollen lymph node on the left side of my neck (date: 11-11-11).  A fine needle biopsy to the lump, a scope of the HPV encampment on the base of my tongue, followed by a Jugular Vein dissection and tongue surgery it was confirmed I had won the cancer lottery.

Hopefully, it will be proven you just ate too spicy of food.

Best of luck,

Matt

P.S. Truman’s Dad, welcome aboard, I am glad to hear you are doing well!

wellington90
Posts: 20
Joined: Sep 2013

Civil Matt,

What do you mean by HPV encampment on the base of your tongue?  Was this your tumor? 

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

My symptoms started as if it was an impacted wisdom tooth--which it was.  The tooth was extracted but the symptoms didn't go away--in fact they got worse.  That's when I was sent to an ENT, and he diagnosed the BOT cancer.  The pain turned out to be pressure on the tri-facial nerve from the tumor, not the tooth.  Just be sure to check out all possibilities.

mike

 

wellington90
Posts: 20
Joined: Sep 2013

Mike,

Did you have a lymph node involvement?  How did the ENT diagnose you? With scope?

Wellington90

wellington90
Posts: 20
Joined: Sep 2013

Mike,

Did your tumor show up on a CT scan initially?  Was the tumor pressing on your tri-facial nerve a lymph node or the actual BOT tumor?  Did the ENT see your tumor with a flex scope?

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I had base of tongue. They cut a chunk out and removed my epiglotis 4 1/2 years ago. My symptoms were diagnosed originally as acid reflux which I didn't understand because food was getting stuck on the tumor and I had to do the Moe, Larry, and Curly shuffle to get it to go down. After surgery the surgeaon wanted me to do radiation. Painfull, yes but thank God for Oxycodone. I now wish I had some of that when I divorced my first wife now that was painfull. Keep in mind we all react differently to treatment so my pain (no not the first wife) could be different than yours. Four of my front bottom teeth went bad from the radiation but the good news is this rotted while I was above ground.

Life is good

      Jeff

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Four of my front bottom teeth went bad from the radiation but the good news is this rotted while I was above ground.

What did you get done to fix the hillbilly grin? I like the look but it is not for everyone. don

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

I had BOT tonsillar cancer. The major symptom was the swollen lump on the side of my neck. However, in the weeks and months preceding my diagnosis I had a mild sore throat and earache on that side, my voice took on a funny sound or quality and talking felt strange, and when I ate food particles went up the back of my throat into my postnasal passages. Generally, I just felt lousy. I was tired, weak, and achy, like I had the flu but without the normal flu symptoms.

One other thing...I spit out blood on a couple occasions. The first time was very early on in the development of the cancer, about 6 months before I was actually diagnosed. It was at night and I was lying in bed and suddenly noticed the taste of blood in my throat and mouth. No pain, just blood. I thought it was a nosebleed, but anterior and so not coming out my nose. It was bright red blood and I spit it out. The bleeding continued and then stopped after a few minutes. Then it happened again like that on 2 or 3 occasions over the following months. Never very severe, just bright red blood that showed up in my throat all of a sudden, unprovoked, and then stopped again in short order. I went to a doctor after the first episode of bleeding and she said she thought it was due to allergies and dry air. Looking back now I'm sure it was due to the cancer. It has never happened again since starting treatment.

jim and i's picture
jim and i
Posts: 1627
Joined: May 2011

Jim had BOT stage four with two lymph. No surgery as tumor went past midline. Treatment was 35 rads and 3 chemo, however the chemo was damaging his kidneys so they had to stop after two. Then he recieved 3 rounds of erbatox. His symptoms started with trouble swallowing; diagnosed as reflux and they stretched his esophagus two times over two years. Then he started to get a severe pain in his left ear. Sent to ENT who said it was nerve damage. He recommended cyber knife to severe the nerve. Surgeon said that is not the problem. Three years later and three ENTs later PC ordered a CT scan and they found a 4cm tumor. Told to be agressive with treatment. I pray your symptoms are nothing serious.

Debbie 

MarineE5
Posts: 754
Joined: Dec 2005

Wellington,

My subtle symptom was my constant clearing of my throat during one winter and thru the summer. I thought I had a mild cold and a constant tickle in my throat during the winter, which I in turn took cough drops for. During the summer, I thought I was just allergic to the pollen,etc.

One morning while on vacation, I rested my right jaw on my right hand while sitting at the kitchen counter and felt a tiny bump along my right jaw bone line. It was about the size of a BB pellet. I waited 2 weeks to see if it went away and then went to my family Doctor. I generally don't run to the Doctor for every little bump or bruise, so he sent me to an ENT Doctor. Long story made short, he scoped me and took 2 biopsies, I had a tumor on the Base of my Tongue. 

My Best to You and Everyone Here 

wellington90
Posts: 20
Joined: Sep 2013

 

Did the ENT notice the tumor when he used the flex scope or did he just randomly biospy and

find it?

phrannie51's picture
phrannie51
Posts: 3727
Joined: Mar 2012

Have you made an appointment with an ENT because you are having symptoms of some kind?  Do you have a lump in your neck, or pain in your tongue?  My ENT did the needle biopsy right in his office.....numbed the area of my neck, then took many samples.  He called me back within a couple days with the bad news.  There are many different types of biopsies.  If you're worred about something, then get thee to a Dr.  The chances are it's not cancer, but the sooner you get in, the sooner you will know or get a huge relief that your worst fears are not coming true.

p

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

The first thing the ENT did was a needle biopsy of the neck (swollen lymph node) to see if that was cancer. Once it was confirmed, he went back and they did a scope (as he was sure it was tongue or tonsil that was the primary) and found the tumor on the base of his tongue. He then took a biopsy of the tongue to confirm.

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

My loved one was diagnosed with BOT and never had any symptoms relating to his tongue. He noticed a swollen lymph node and after 10 days of antibiotic therapy and no change, he was then sent for a needle biospy that confirmed it was cancer.

~C

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

In my case, last October I went to my PCP complaining of a full feeling in my throat and hoarsness.  No pain.  He brushed it off as acid reflux and told me to take Prilosec for 2 weeks.  I did not puch for more tests and wished I had listened to my body and gut.  Then a swollen lymph node appeaared after Easter this April.  I gave it a month to go away and it did not.  It was tender and just felt different.  Finally got an ultrasound ordered by PCP and saw an ENT who did not scope me which he should have to find the primary tomor on my tongue base.  Even went to my dentist for a check up, exam, panorex to rule out a tooth infection.  All MD's have since said "you did not fit the profile"  of someone with head and neck SCC.  I have told them all hey I am the new profile!  Look for this in other people like me.

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