Recently Diagnosed

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.

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 

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??

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

*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!

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

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...