Recently Diagnosed

Darkdancer333

Hi everyone!!! yesterday I was diagnosed with squamous carcinoma... back of the tongue. I had no symptoms except a swollen gland on the side of my neck. this was about 2cm. 

I only had this for about two weeks.. They said the primary tumor site is most likely at that right tongue base at about 2.5 cm. They said it appears to invade deeply into the posterior tongue musculature. 

Lungs, larynx, oropharynx, nasopharynx all appear normal. 

Chest and arm pits all normal........

When I talked to my primary care she classified it at a stage three because of the lymph node. She said bad news was suspected cancer, good news it was isolated no where else to be found. 

She did list the possibility of radiation, chemo and surgery were all a possibility. 

I have an appointment with the head and throat specialist this coming Tuesday. 

The first thing that ran through my head was how long do i have?? I did smoke for 35 years but have been cigarette free since 2009.... 

 

I thought this was caught at an early stage because my blood work three weeks ago detected nothing, I had no trouble swallowing, sore throat... etc... Just the lump in the neck.

Right now I am in limbo and hate the feeling of not knowing.. What was amazing is i had my cat scan yesterday and 90 minutes late my doctor called me. I wanted the no call

Anyway I figured i would introduce my self and look for a support group... 

Thx

again

swopoe

Sorry you are here. But talk

Sorry you are here. But talk to your doctor this week first. Likely, you will be around for a long time. The treatment is rough, but you can make it through. My husband had rads, chemo, and surgery for his oral tongue cancer, and he is doing great now. This board was a lifesaver for us. See what your doctor says first and go from there. Don’t google cure rates- everyone is different. Seining all my best wishes.

soonermom

Sorry You Are in Our Club

You can make it through.  Please consider selecting a treatment team from a comprehensive cancer center.  It took weeks before there was a treatment plan for my husband as this is complex cancer.  Eat all the foods you enjoy right now!  

Darkdancer333

soonermom said:

Sorry You Are in Our Club

You can make it through.  Please consider selecting a treatment team from a comprehensive cancer center.  It took weeks before there was a treatment plan for my husband as this is complex cancer.  Eat all the foods you enjoy right now!  

I am in Seattle but my doctor

I am in Seattle but my doctor is through Virginia Mason. We have excellent cancer centers such as Fred Hutchinson and Cancer Alliance.

He performs all the surgeries etc. But when it comes to radiation does it really matter where? Even if you have a doctor can you go to another facility for treatment

 I feel healthy I would never have known if it wasn't for the 2cm lymph node. 

MarineE5

Similar signs

Darkdancer333,

I recently passed my 13th year mark of completion of my Radiation treatments for Base of Tongue cancer. I was never a smoker. I too found my cancer due to a tiny bump under my jaw line. Long story made a bit shorter, I went to University of Pennsylvania Hospital and had Surgery first. After healing for a spell, I had 30 Radiation treatments, I had no Chemo as the Surgeon felt he got it all. Chemo was a backup plan which I am glad to report I did not need.

As the others stated, you will get thru this, it is bumpy to say the least, but you can do it. With support from family and friends and the new found internet friends here, we will get you thru this. We listen well when you need to vent and here to lean on as well.

Please keep us posted with your Doctor visits, shout out some of your questions and we will try to answer them for you.

My Best to You and Everyone Here

Darkdancer333

MarineE5 said:

Similar signs

Darkdancer333,

I recently passed my 13th year mark of completion of my Radiation treatments for Base of Tongue cancer. I was never a smoker. I too found my cancer due to a tiny bump under my jaw line. Long story made a bit shorter, I went to University of Pennsylvania Hospital and had Surgery first. After healing for a spell, I had 30 Radiation treatments, I had no Chemo as the Surgeon felt he got it all. Chemo was a backup plan which I am glad to report I did not need.

As the others stated, you will get thru this, it is bumpy to say the least, but you can do it. With support from family and friends and the new found internet friends here, we will get you thru this. We listen well when you need to vent and here to lean on as well.

Please keep us posted with your Doctor visits, shout out some of your questions and we will try to answer them for you.

My Best to You and Everyone Here

Thx all for the support and I

Thx all for the support and I will let you all know what the Doc has to say... I may have to play that song from the Gratefull Dead called "Truckin"!!!!!!!!!

CivilMatt

welcome (maybe) new one

Dd333,

Welcome to the H&N forum, where a lump on the neck is the ticket for the BIG show.  That little (or big) lump will bump you past the bouncers and right to the front of the line. You are (weird) lucky.

My tongue was invaded too.  I chose the surgery followed by rads  and Erbitux to slay the dragon.

All other areas remained neutral, except the one lymph node on my neck.

I was stage IVa, SCC, BOT, HPV+.

You did not give me enough information to determine with any accuracy the number of remaining years you have till you are called home, that is if you follow through with treatment.  My general formula is:  Number Of Years Left To Live = (100 – CURRENT AGE).  I use the calculator on my phone to do the math; you may use the one on your computer if needed.

If blood tests readily revealed cancer at an early stage, then blood tests would be more popular.  Your lump was the warning, it is just  too bad for all H&N members with a “lump alarm” that it  did  not go off sooner.  Like the period of time it takes for a frozen turkey dropped on your toe to hurt, which is instantly.

Now the tricky part, did you have a positive biopsy for cancer? It is the gold standard around here.  I may have jabbered on for nothing.

Best of luck to you.

Matt

 

Darkdancer333

CivilMatt said:

welcome (maybe) new one

Dd333,

Welcome to the H&N forum, where a lump on the neck is the ticket for the BIG show.  That little (or big) lump will bump you past the bouncers and right to the front of the line. You are (weird) lucky.

My tongue was invaded too.  I chose the surgery followed by rads  and Erbitux to slay the dragon.

All other areas remained neutral, except the one lymph node on my neck.

I was stage IVa, SCC, BOT, HPV+.

You did not give me enough information to determine with any accuracy the number of remaining years you have till you are called home, that is if you follow through with treatment.  My general formula is:  Number Of Years Left To Live = (100 – CURRENT AGE).  I use the calculator on my phone to do the math; you may use the one on your computer if needed.

If blood tests readily revealed cancer at an early stage, then blood tests would be more popular.  Your lump was the warning, it is just  too bad for all H&N members with a “lump alarm” that it  did  not go off sooner.  Like the period of time it takes for a frozen turkey dropped on your toe to hurt, which is instantly.

Now the tricky part, did you have a positive biopsy for cancer? It is the gold standard around here.  I may have jabbered on for nothing.

Best of luck to you.

Matt

 

Hi

Hi

 

Im 63

I know she said i was stage 3 but that was the internal medicine doctor

I see the docotor tuesday so i can clarifty all this psycho babble

here is the report they went by

CT of the neck and chest with IV contrast: 2/8/2018

   

Exam Reason:evaluate approx 2x3cm right ant cervical lymph node/mass

Clinical/Surgical HX:former smoker, asymptomatic aside from neck lump

100cc Omni350 IV

   

TECHNIQUE: After the intravenous administration of 100 cc of

Omnipaque 350 contrast, 1.25 mm axial images were acquired using

helical CT technique from the skull base through costophrenic sulci.

Coronal, sagittal and thick slab coronal MIP reformations were

performed.

   

Total Exam Dose-Length Product (DLP): 671 mGy-cm.

   

COMPARISON: None.

   

NECK FINDINGS:

-On the right, corresponding to the palpable abnormality, there is a

large partially necrotic level 2A lymph node, just below and slightly

posterior to the submandibular gland. This node measures 2.6 x 2.4 x

2.0 cm in size. It has some rim enhancement. The appearance is highly

suspect for a node involved by squamous carcinoma. No other enlarged

or abnormal appearing lymph nodes are identified elsewhere within the

neck.

   

-The primary tumor site is most likely at the right tongue base.

There is a superficial ulcerated mass with epicenter at the right

tongue base. Some but may cross midline superficially on the left. It

does appear to invade deeply into the posterior tongue musculature,

best seen on series 3 image 79., And series 602 image 68. The mass is

approximately 2.5 cm in greatest size. It appears to extend from the

tongue base along the glottic surface of the epiglottis, best seen on

the sagittal images.

   

   

-No masses identified in the anterior oropharynx, nasopharynx or

larynx.

-Parotid glands and submandibular glands appear normal bilaterally.

-Mild calcified plaque at carotid bifurcations.

-The thyroid gland appears normal.

   

CHEST FINDINGS:

   

Lungs: No significant nodules or infiltrates. There is a small

densely calcified granuloma in the posterior basilar left lower lobe

approximately 4 mm in size, otherwise the lungs are clear.

Pleura: No thickening or fluid.

Mediastinum/Hila:No adenopathy.

Axilla: No adenopathy.

Heart: Normal size. Substantial coronary artery calcifications, and

likely a stent in the proximal LAD

Bones/Chest Wall: Negative.

   

Upper Abdomen: Visualized portion is grossly unremarkable.

   

IMPRESSION:

1. Necrotic appearing right 2A lymph node strongly suspicious for

involvement by squamous carcinoma. Primary tumor site is likely at

the deep right tongue base with extension onto the surface of the

epiglottis and possibly superficial extension across midline to the

left tongue base.

2. No findings suspicious for metastatic disease in the chest.

 

Darkdancer333

hi matt ... I am 63 to i

hi matt ... I am 63 to i figure a few more years lol I tried to post the results of ct scan but its under review. Anyway my internal medicine doctor is the one who broke the grand news She classified me as stage 3 ... I see the ear nose and throat specialist Tuesday  hope fully biopsy is done then

Kimpallis

welcome I am also new to all this

 

Apologies In advance ( grammar/spelling  sucks, I’m typing on an iPhone just had my surgery and I’m on pain killers and I have add) 

 

 

Hi my name is kim And I’m 34 years old I Am non smoker hpv- negative. I had leouplakia for years but dentist didn’t think it was an issue then I went to a new dentist  and he said I should get it biopsy and while waiting to get it done I had gotten what doctors  thought was hand foot  and mouth then they thought cold sores etc even the ENT thought it was nothing turned out it was SCC  took for ever to get labs and results at the military hospital luckily the surgery seemed to complicated to do at the army hospital and he refers me to a bigger hospital  here I am today I just had a neck dissection and partial glossectomy on the right side of my tounge on 5/feb18  at first a lot smaller on the scans I was t1 N0M0  but wjwni changed doctors I was T2NOMO before surgery I am waiting to find out about what next when the tumor board meets this week and my follow up is the 16th of this month. It’s great they found it early and so far I’m recovering and reading As much as I can from this surgery. All I can say is good luck and ask as many questions as you can and if they recommend  surgery  now when it’s this early go for it and get it all out. I was in the hospital for 2 Days by my choice I could have left after a day but they took out a little more tounge than expected but I feel great and look forward to Everday. Feel free to message me if you have questions as I am still new to all this  myself 

Darkdancer333

Kimpallis said:

welcome I am also new to all this

 

Apologies In advance ( grammar/spelling  sucks, I’m typing on an iPhone just had my surgery and I’m on pain killers and I have add) 

 

 

Hi my name is kim And I’m 34 years old I Am non smoker hpv- negative. I had leouplakia for years but dentist didn’t think it was an issue then I went to a new dentist  and he said I should get it biopsy and while waiting to get it done I had gotten what doctors  thought was hand foot  and mouth then they thought cold sores etc even the ENT thought it was nothing turned out it was SCC  took for ever to get labs and results at the military hospital luckily the surgery seemed to complicated to do at the army hospital and he refers me to a bigger hospital  here I am today I just had a neck dissection and partial glossectomy on the right side of my tounge on 5/feb18  at first a lot smaller on the scans I was t1 N0M0  but wjwni changed doctors I was T2NOMO before surgery I am waiting to find out about what next when the tumor board meets this week and my follow up is the 16th of this month. It’s great they found it early and so far I’m recovering and reading As much as I can from this surgery. All I can say is good luck and ask as many questions as you can and if they recommend  surgery  now when it’s this early go for it and get it all out. I was in the hospital for 2 Days by my choice I could have left after a day but they took out a little more tounge than expected but I feel great and look forward to Everday. Feel free to message me if you have questions as I am still new to all this  myself 

I think this is a great

I think this is a great support site. I go so the specialist Tuesday all we are going by at the moment is the cat scan and what my primary doctory has informed me. Yesterday I felt like a cold was coming on but rest lol today i feel great.

I know its a process but life is precious and I as you will can get through this in flying colors. Keep on trucking !!!!!!!!!!

aak16

Doesn't sound too bad

Darkdancer,

Your CT results basically say that you have a mass on your tongue which probably spread to the one lymph node. I did a quick Google search (I know, people will tell you not to!) and apparently there are other reasons for necrosis of the lymph nodes. However, if it's right near the mass on your tongue, that might be the more likely cause. BUT you won't know for sure until you have all of your tests/appointments with your doctors.  While you may have cancer that has spread to a lymph node, it sounds like it's still pretty contained, so I'd assume any treatment plan your doctors come up with will take care of it. Like others said, treatment will be rough but you will probable be fine at the end of it! Are you getting a biopsy??

Darkdancer333

aak16 said:

Doesn't sound too bad

Darkdancer,

Your CT results basically say that you have a mass on your tongue which probably spread to the one lymph node. I did a quick Google search (I know, people will tell you not to!) and apparently there are other reasons for necrosis of the lymph nodes. However, if it's right near the mass on your tongue, that might be the more likely cause. BUT you won't know for sure until you have all of your tests/appointments with your doctors.  While you may have cancer that has spread to a lymph node, it sounds like it's still pretty contained, so I'd assume any treatment plan your doctors come up with will take care of it. Like others said, treatment will be rough but you will probable be fine at the end of it! Are you getting a biopsy??

hi 

hi 

i go see the Oconologist tomorrow so i will bombard him with questions .. 

My primary care doctor said that was the good news ... contained hadn't spread anywhere.

Bad time of year to have this, going  to interfere with me and the wife cross country skiing..........

Peneloppe

Good luck tomorrow, tape the

Good luck tomorrow, tape the consultation, it helps to listen to what was said once the stress is over.

dwp155

Welcome!

I am 63 and currently 10 weeks post treatment.  Same diagnosis except mine was stage 4 - (you will find in our type of cancer the staging is really unimportant and varied acording to my oncologist) Like you have been told treatment is tough but doable.  If I had to give you advice, start putting on weight (I put on 10 and lost 26 total) and keep positive.  I have been blogging during my treatment if you want to see a daily perspective check out www.cancerguy.blog.  If I can help - please let me know.

Don

OKCnative

*Sorry, Long Comment!

*Sorry, Long Comment!

The bad news is you've found yourself in a place where you need to introduce yourself to a Cancer Survivor Network. The good news is, this site is full of posts because we've all pulled through it or are successfully going through it right now!

My diagnosis sounds identical to yours; I noticed an enlarged neck lymph node and was subsequently diagnosed with SCC at the base of my tongue (a bit larger than yours) and stage 3.

I'll jump to the end and then backup - I'm 4.5 months post treatment and virtually back to 100%. My only negative post treatment symptoms at this time are occasional dry mouth (mostly just at night) and a slight lump feeling when I swallow (scar tissue). The positive post treatment symptoms (yes, there can be an upside) are that I no longer have a craving for sweets (I eat them and enjoy them, I just don't crave them anymore), I can't stand the taste of soda pop any longer (the syrup tastes like those really cheap diet sodas you get at the dollar store) and I used to drink diet Dr. Pepper all day long. I'm also holding at my ideal weight at 170lbs and was 185lbs prior to treatment (I intentionally bulked up to 200+ pounds right before treatment started).


A couple of things it looks like you've yet to encounter.... I assume your docs will look to perform a biopsy to confirm the SCC prognosis and confirm either HPV+ or - status. Assuming the biopsy comes back positive for SCC and regardless of the HPV status, you'll then discuss treatment options - I say "options" because that's the language you're docs should also use because you do have options with a SCC confirmed diagnosis. Those primary options include; tumor surgery, lymph node surgery, chemo and radiation. Some people get one, multiple or all of those options.

While every diagnosis is unique to an extent, the treatment plans can vary widely - even from doctor to doctor.

I can not stress this enough - meet with as many doctors as you need to so that you feel 100% confident in your team and your plan. Don't just sit in the doctor's office and nod.

Also, read this board inside and out. You'll find that your docs are well meaning but they miss a lot when it comes to how you will personally deal with your treatment and the side effects. I've found far more valuable information on this board than I received from my cancer center. Read this board and make a list of tips others have shared and start getting things in order. Also note any questions you have for your doc and take that list to appointments. Don't be afraid to take charge of your treatment. I changed docs during mine early on and I'm so glad I did. Also, I am so thankful I recorded all of my doctor visits so I could review them later. You'll be surprised how differently you remember things or how much you don't remember at all because of the shock of it all and the fact it can be overwhelming.

That's my general advice I'd give to anyone and I doubt many here would disagree with it.

 

Now, I'll give you MY OPINION based solely on my experience (take from it what you will).....



First, have you been scoped? (tiny camera placed up your nose and then down your throat to look for the tumor). My first ENT never attempted to scope me - wanted to go straight to neck dissection and just biopsy the removed nodes. I fired him immediately.

My second ENT immediately scoped me (could not confirm the tumor but did see a mass of blood vessels on one side of the base of my tongue). Based on what he saw, he then suggested a needle biopsy of the enlarged neck node. He did that in his office with only mild discomfort (think getting blood drawn and they miss it the first time and gotta dig a bit - uncomfortable but definitely bearable). I got the results of the biopsy the next day - positive for SCC.

My ENT then suggested I make an appointment with the local cancer center and not an individual oncologist. His opinion was this is very treatable, curable and survivable if done correctly and he prefers a team approach that cancer centers offer over individual oncologists.

I went to the Stephenson Cancer Center in Oklahoma. My oncologist immediately scoped me again. She saw the same mass of blood vessels and said, "that's the tumor, I just need to biopsy it for confirmation and to verify it's the primary." She then set me up for a biopsy of the base of my tongue. This is alot more involved than a needle biopsy. They put you under and it's actual surgery that takes 10 days or so to fully recover from (as in pain at the biopsy site - otherwise you're good to go the next day). She also sent off parts of the biopsy for HPV testing. The biopsy showed the BOT tumor was the primary and it was HPV+.

My doc then discussed treatment options; robotic surgery on the tumor at the base of my tongue or no surgery at all, radiation of the tumor and lymph nodes, removal of lymph nodes and chemo. 

Her recommendation was; no surgery at all (tongue or nodes), radiation of tumor and nodes and chemo at the same time. The teams thought was that SCC BOT even at stage 3 or 4 is not only very treatable but very curable (80-90+% cure rate at that center). They also felt confident that surgeries can cause more harm than good and that there was no reason to cut first. They said they are extremely successful at treating first and then deciding if surgery is needed later once things have shrunk as much as they are going to.

We decided on a treatment plan; 35 daily radiations of my head in three locations, plus Cisplatin chemo. I did not want a chemo port, so instead of chemo 2 days a week I only came in 3x (once every 3 weeks and received all day long massive doses).

You'll find that many people on this board had the exact same treatment plan.

I also refused to have a PEG feeding tube installed. That decision actually was most influenced by a person who posts here (Andy13460). I followed his recovery on this board and I wished for the same and I noticed he didn't do the feeding tube and had no regrets. That is the one thing my docs really wished I would have reconsidered at the time. They claim that 80% of patients have the tube. I promised that if it became medically necessary that I would. It didn't. I credit the no feeding tube for my very quick recovery, ability to eat anything I wanted within weeks of treatment ending and the fact I have my taste buds still.

Again, just my opinion as someone who basically sailed through treatment; Cross your fingers for an HPV+ diagnosis. HPV cancers react universally better to treatment than non HPV cancers. Avoid surgery if it is an option at all. Having your tongue cut on can lead to permanent complications talking and eating and means additional discomfort and rehabilitation. Avoid neck dissection if possible. It too is yet another surgery with scars, discomfort and lifelong issues you'll have to deal with. Lymphedema just being one of them. Avoid a PEG tube if possible. PEG tubes pre-treatment are definitely an American thing. It was extremely difficult to manage my caloric intake without a tube (throat pain) but it also ensured that I continued to use my throat throughout treatment. This meant I required no rehabilitation and my muscles never forgot how to swallow. If you have access (legally or illegally) to THC (marijuana) in the form of edibles, patches or cream then consider it. I did all three (illegally and I don't care) and 100% credit it for the fact I NEVER had to take any pain medicine or opioids and not once did I throw up. I was prescribed liquid hydrocodone but that was only taken in tiny doses to calm a cough I'd occasionally get that would not otherwise subside and would cause dry heaving. Find something you can tolerate to get your calories in. It is crucial that you eat and drink. I found Boost VHC was ideal for me. 530 calories in only 8 ounces (8 swallows 4x a day). Taste terrible but it's temporary.

All that said, treatment is grueling and nothing can really prepare you for it - other than the realization it's temporary and a necessary evil with a highly likely positive outcome.

Good Luck and feel free to private message me anytime!

johnsonbl

Darkdancer333 said:

hi 

hi 

i go see the Oconologist tomorrow so i will bombard him with questions .. 

My primary care doctor said that was the good news ... contained hadn't spread anywhere.

Bad time of year to have this, going  to interfere with me and the wife cross country skiing..........

Sorry you are here...

Good luck through this...  You're situation was similar to mine...  By the time I had my neck disection it had spread to 2 lymph nodes...none bigger than 2cm.  They found the primary in my left base of tongue...  no bigger than 4mm across.  Who knew something so small could cause so many problems.

Lots of people have already discussed HPV and such so I won't bore you with more.  Hopefully you get good news...  Good luck!

 

Brandon

johnsonbl

Darkdancer333 said:

hi matt ... I am 63 to i

hi matt ... I am 63 to i figure a few more years lol I tried to post the results of ct scan but its under review. Anyway my internal medicine doctor is the one who broke the grand news She classified me as stage 3 ... I see the ear nose and throat specialist Tuesday  hope fully biopsy is done then

Staging...

I commented down below but wanted to add one more comment.  Staging is deceiving...  They just redid the staging for head and neck cancer...there is one set of rules for HPV+ vs. HPV-.  Your stage 3 above is likely for HPV-.  Based on the characteristics you describe you'd likely be classified as a Stage 1 if it's HPV+.  It's not actually well known that this is a thing...my pathology report actually listed both classifications because it was a transition period.  I was Stage 4 in the old and Stage 1 in the new.  Get ready to learn more about all of this than you ever would have thought...  

MikefromWinthrop

Darkdancer333 said:

hi 

hi 

i go see the Oconologist tomorrow so i will bombard him with questions .. 

My primary care doctor said that was the good news ... contained hadn't spread anywhere.

Bad time of year to have this, going  to interfere with me and the wife cross country skiing..........

bad time of the year

funny you should say this, my treatment began during the fall salmon runs and trout season, bad time for me , anyway, good luck, OKC has it down very well, although my biopsy of the tongue I was awake and it was done through my nose, quite the experience.

Darkdancer333

The Doc went as well as

The Doc went as well as expected. My tumor is average they so and the cureable rate is 85%. He said most like im HPV positive because of how it came about and my age etc. I think my treatment will be similar to your is the biopsy is correct. We taled about your treatment and he totally agreed on the non-surgery. Aslo he is against PEG unless absolutelty necessary. He wants me to work on my throat in the process. Week from Friday is biopsy and we will know the HPV status then. Wednesday is PET scan and before radiation starts he wants my dentes to do a full gum cleaning..  Now it looks like off to the races. 

The nurse was telling me i did my homeowork well thx to people here and my research. The wife has been in worse shape than I. But after seeing DOC she feels better.

OKCnative

Darkdancer333 said:

The Doc went as well as

The Doc went as well as expected. My tumor is average they so and the cureable rate is 85%. He said most like im HPV positive because of how it came about and my age etc. I think my treatment will be similar to your is the biopsy is correct. We taled about your treatment and he totally agreed on the non-surgery. Aslo he is against PEG unless absolutelty necessary. He wants me to work on my throat in the process. Week from Friday is biopsy and we will know the HPV status then. Wednesday is PET scan and before radiation starts he wants my dentes to do a full gum cleaning..  Now it looks like off to the races. 

The nurse was telling me i did my homeowork well thx to people here and my research. The wife has been in worse shape than I. But after seeing DOC she feels better.

Get started on treatment soon

Get started on treatment soon and you'll be done and on your way to recovery before the the summer has even really gotten hot! Good luck! It's gonna be hell but it's so worth it.