CSN Login
Members Online: 15

Newly Diagnosed: Squamous Cell Carcinoma (Level 4) - Tonsil suspected

spitfirecole
Posts: 3
Joined: Aug 2007

Last Thursday, my doctor called with the biopsy results of the curious "swelling" found on the right side of my neck . . . squamous cell carcinoma.

CT Scan showed that 3 lymph nodes on that side of neck have become enlarged.

This was tough because I originally thought I had mono or a viral infection. It was awful weird to be praying for mono.

When the cancer diagnosis dropped, we still weren't sure of primary, but CT scan showed a slight enlargement in nasopharynx.

I immediately went to UPenn Cancer Center in Philly. Excellent docs so far. They are rechecking my slides, and did an initial scope today through my nose. The most signficant finding was my tonsil, looks like it could be the problem, and I'm going in for ENT & biopsy.

Based on lymph node involement on my neck, it looks like this will be Stage 4, and prognosis for that is tough. It's been good to hear stories of other Stage 4 people with tonsillar cancer pulling through. I'd love to hear more . . . and I would really love to be one!

I'm doing ok with everything 90% of the time, but I get those down moments. My family and support group are doing great, but it's hard on them. I can only imagine how tough things will be when the treatments begin.

I am thrilled to have found this discussion board.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

I am a recent newcomer to this board too and my advice is don't fool around with this. Step up and be your own best healthcare advocate. In a nutshell, my situation was much like yours. In Dec. I had a CTScan of sinus area trying to figure out why at the age of 57, never allergic to anything, but had developed a low-grade sinus drainage, ear plugging, etc. Scan showed all normal. Feb-Mar I had a knot on my left neck just below jawbone. Grew to golfball size in about 2 months. ENT sent me for MRI, showed benign branchial cleft cyst. ENT says options are do nothing, biopsy in place or remove but no hurry. My wife and I pushed to get it out. ENT took it on 5-14, said it appeared healthy and normal. On 5-21 Path report says primary tumor, Adenocarcinoma in a BCC, extremely rare and can be nasty to deal with. ENT wants 2nd opinion which we got from MD Anderson in Houston. In their opinion it was not a cyst rather it was lymph nodes with squamous cell carcinoma AND they found HPV16 markers indicating it had metastasized FROM the tonsil area. July 25, ENT goes in with scopes of throat, sinus and esophagus, all normal EXCEPT left tonsil which is inflammed. Took it and adenoids, Path report verified primary site of SCC, HPV positive. Unfortunately the ENT could not get all of the malignant cells at the base of the tonsil without serious neck dissection which would have been very rough on me. He opted to not put me through that because SCC-HPV positive is very easy to treat in place. SO, here I am mid-Aug, about to start 35 IMRT treatments with 1/wk. Cisplatin. Not going to be fun but doable and my rad oncol says cure rate of 80-90%. There is a lot more to my story in the way of things my wife and I pushed for that really made a difference. But, suffice it to say, step up and get your options and decide but do it promptly. My CT from Dec did not go low enough to see the tonsil area. My MRI from April did not go high enough. I asked about PET scan full body but that didn't happen until after the T&A 7/25. Praise the Lord it showed no sign of cancer except the tonsil excision site. So, to a certain extent I am pissed that I am probably close to a year down the road from a time where a simple T&A may have ended all of this. We'll never know. My rad oncol says easily 1/3 of the cure is attitude. Keep it positive, push for answers, ask all the questions you can think of, TAKE LOTS OF NOTES. But, don't delay. ASK ABOUT A PET SCAN. Others here referr to it as God's GPS for cancer and they are right. Hopefully this is very early and can be dealt with swiftly and surely. Keep on this Board because there are some amazing, much more experienced contributors here that will surround you with compassionate advice and historical reference. They have really made the difference in my life in such a short time. Be well..............stay in touch. JK

TereB
Posts: 288
Joined: Apr 2003

Hi, Sorry about the diagnosis and as scary as it can be, it is not the end.

I have a different head/neck cancer and had a lump on my neck which I hoped was a little infection. Needless to say, it wasn't.

You already have good things in your favor: Good doctors, your attitude and a support group. It is very normal to feel down at times so don't worry about it, just give yourself time to be a little worried and then move on. I'm glad your family and support group are doing great and, of course, it would be hard on them too because they care about you. Things might be tough when treatment starts but you will discover some inner strength that you probably didn't know you had and you will do fine, the same for your family and friends.

The discussion board is good, you get answers fairly quick and you can check the survivor's chat room too. They have all been through similar things, they are nice and are good with support.

There may be difficult times ahead but I'm sure you are going to do just fine. Youll be in my prayers!

All the best,
Tere

Peter8
Posts: 2
Joined: Aug 2007

Sounds like you and I are in the same boat. I was diagnosed in July and have had 2 dissections of my neck and a tonsilectomy. The cancer was found in my right tonsil and a lymph node, but my pet scan came back with great results. I have had a port inserted and a feeding tube, plus I have had one chemo treatment and I am having my 4th radiation treatment later this morning. I am claiming I am cancer free and the treatments are a clean up crew to make sure this doesnt come back. We can run this race together if you wish. I am with you on the down times, but hang in there and have Faith.

Peter

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

Me too i have just been diagnosed with the same thing sept mine is in my mouth hasnt spread yet to my nodes (thank god) im not going to have surgery i will be starting my rads and chemo on 10th....am going for my mask fitting and feeding tube next week...we will beat this

spitfirecole
Posts: 3
Joined: Aug 2007

My PET results came back showing cancer only in the lymph nodes on the right side of my neck. No obvious signs of cancer anywhere else.

The doc took some blind biopsy tissue samples and just as the lymph nodes involvled would suggest . . . I have nasopharynx cancer (NPC). I feel good that we've identified the primary site, and actually if you have to have head/neck cancer with neck lymph node involvment, NPC is better than other options. My primary tumor is so small that it doesn't even show as a legion on my CT Scan or register on the PET . . . which seems like good news. I could either be Staged with II or IV, depending on the size of the lymph node lesions. Until my doctor tells me one way or the other, I'm not playing any guessing games.

The good news is that even stage 4 NPC has like a 40-52% 5-year surivival rate, which is more of a comfort than some of the numbers I was looking at. Of course, a number is just a stat and even a 2% chance to live is a chance to live and you can make it. I was already living to be one of those 2 - 20%.

My doctor told me that I have a "good chance" to beat my cancer. My family and friends are rallying around me, and I have a very upbeat outlook and faith to help keep me positive and in the fight.

For everyone who reads this message, who may be diagnosed the first time, keep your chin up. Attitude is everything. Love life and those around you. Comfort yourself and know that a stranger out there cares for you and hopes/prays that you find peace, love and health!

launicahog
Posts: 6
Joined: Aug 2007

My one year anniversary for the modified radical neck dissection is this Sunday. Squamous cell carcinoma, tumor under left jaw bone with a couple of lump nodes along for the ride. The primary source was the left tonsil. Stages out at a 4.
My simple advice after reading your original message is don't get totally depressed when dealing with statistics and percentages. They are helpful in a big picture kind of way, but the numbers that will be truely important to you are the ones specifically dealing with you. Your overall health, your mental attitude, your cancer, your treatment, your doctors. As an example the stats said a low 30% survival rate for the type of cancer and stage I'm at, yet "my stats" are in the 70 to 80% range. Big difference. Also keep in mind the 5 year survival rates are for statistical comparisons, it's not that you only have 5 years to live. The comparisons are done over a 5 year period.
Keep doing what you have already have started. Research the internet, ask every question of the doctors you can think of (and yes, ask them about the survival rate statistics), don't feel sorry for yourself for there are many people much worse off, and most importantly know that you can get through this. It's tough, but you will be surprised how you will bounce right back.

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

My oncologist told me to never look at the statistics as everyone's cancer is different. My type of cancer is very rare and aggressive. I was told that there were no studies done on my cancer so chemo was ruled out. I read on the internet that I had a 30% or less change to survive 5 years. He said my chances for survival are great and recurrance very low. So good luck to you, you will be in my prayers. Shelly

mikec59
Posts: 2
Joined: Jan 2011

Hi,

I just read your story. I had the same thing in Sept. 2008 at UPENN. Did you also see Dr. Weinstein? That's who I was treated by. Had to have the radical neck surgery. Tumor was to big for robotic surgery. How did you make out. Great staff, I'm sure you had good doctors all around. Dr. Quon for radiation? If you don't mind, let me know. Thanks.

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Mike,

Thought I'd let you know that I've been reading these boards for a little over a year, and don't recall ever seeing Launica post. Many people visit and post on this site for a while, then "outgrow" the site, and move on. Good chance you'll hear from others here with similar situations, even if they weren't at UPENN. Glad you made it to the site - the folks here are great. Do well.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Mike,
Mark was/is treated at UPENN, same docs. Love them!!!! SCC Stage IV HPV+ left tonsil, radical neck.

Skiffin16's picture
Skiffin16
Posts: 8122
Joined: Sep 2009

This post started back in 2007.....

kingcole42005's picture
kingcole42005
Posts: 177
Joined: Oct 2010

I thought it was a mistake! There have been a couple like that. How funny.

jparker11's picture
jparker11
Posts: 2
Joined: Jun 2011

Hi Mark, KIMBA 1505

I just found this web site and wanted to hear how your treatment is going. I just posted my story and am looking for advice and suggestions to treatment. I live just outside of Baltimore and will be going to Johns Hopkins Bayview for the treatment.

I hope this email finds you well and enjoying life.

Cheers,
Joe

Rick C
Posts: 1
Joined: May 2012

I am stage a 4 tonsilar cancer survivor, I had mine removed a year and a half ago. I go in for a routine PET scan tomorrow, my 4th since the operation. So far, everything has been good. I didn't realize that anything was wrong until I was shaving one morning and noticed a hard lump on my neck. My neck muscle had been twitching off and on for a couple of weeks. I had a good friend who had just passed away from throat cancer and I wasn't going to take any chances. Withing 10 days after I called and made an appointment with an ear, nose, and throat doctor, I had the surgery. I lost the neck muscle, nerve, and some of the back of my tongue but, I am able to talk and eat. The radiation treatment took away my taste and left me with dry mouth but, it is returning. Just do what your doctors tell you and keep up a very positive attitude. The one thing I noticed during treatments, the ones with the best attitudes had the better survival rates. My nurses told me this also.

God bless you my friend.

Skiffin16's picture
Skiffin16
Posts: 8122
Joined: Sep 2009

Just to say again, this thread started back in 2007, lay dormant until 2011, and has had any other posts recently.

But...., on a positive note...

Welcome Rick...

I was STG III SCC Tonsils, HPV+ and a secondary lymphnode...that was January 2009. Since then all is good and hoping to stay that way.

I have regained around 100% of my taste, and nearly 95% of saliva...more than likely yours will come back to some degree as well...

Here is a link to the SuperThread, tons of great info, all compiled my survivors here and set to a thread by Dawn (Sweetblood22);

SUPERTHREAD

Best,
John

Tim6003's picture
Tim6003
Posts: 1501
Joined: Nov 2011

....sound all too familiar ....glad you are posting to the forum ...always good to hear other stories ...

Tim

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2015 © Cancer Survivors Network