My Introduction & Sharing About Squamous Cell Carcinoma

Bimmerknut

I officially became a member of this club two weeks ago when I was diagnosed with Level 1 Squamous. A few notable and relatable things are that I am a 60-year old man. Okay, TOMORROW I will be 60. I am a survivor of non-hodgkins lymphoma as of 2006. I quit smoking in 1991 and to say I drink alcohol lightly is putting it mildly. I rarely drink and when I do it's one or two and almost always to accomodate a meal.

I also have Barrett's Esophagitis and it IS relvant to my story, so that is where I'll begin. I was diagnosed with Barrett's in 1997. The short of it is I lose 80% of the food I eat. When that food comes back up, so do the stomach acids. Those stomach acids have over the years eaten the enamel on my teeth and I've lost a handful. In the past year, I've been working with a very good dentist to perform root canals and use crowns to save the teeth that I can and then go to dentures.

About four months ago, I while we were doing a root canal, I mentioned that my tongue was becoming irritated on the side by a sharp portion of tooth. She ground the sharp edges of a tooth and it was better. Another month later and I was still having problems. We tried to grind again. Suddenly a callous/lesion formed and become very thick and constantly painful. Everything to do with my mouth hurt. Eating, swallowing, chewing, spitting, talking, sucking on a straw and even lying in bed on that same side. This chronic pain had led to sleep deprivation and utter fatigue and exhaustion. I'm disabled through a back injury but I'm in my senior year at my local university and it has greatly affected my ability to study, read and take part in oral presentations.

My dentist finally referred me to an ENT doctor who took a biopsy and the result has landed me in your club of people sharing what thier experiences are. Treatment is set for surgery on June 6th. He is going to remove a football-shaped portion of my tongue and have it set to the lab while I'm still sedated to make sure he gets it all. I'm okay with all of this! But, the pain has also been deep down near my jaw-bone and I have very mild but frequent ear-aches. I'm fearing that it has gone into my lynph nodes. I'm also fearing that the spot on my jaw, below my tongue cannot be exised and that would mean chemo and radiation. My oyhrt bout with cancer was in my ukpper groin. Getting chemo and radiation in the head and neck area frankly leaves me unneasy.

I'm still sleep-deprived every night. It's wearing me down. I'm a HUGELY optimistic person and I know that God HAS me in this! My faith is immense! Even that being said, there is a certain amount of depression that has crept in slowly. I know that it is not clinical depression, but depression nonetheless from sheer exhaustion.

Normally, most people would apologize for being long-winded, but I am a creative writing major and I take certain prides in that. So without boring you all further, I'd be very pleased to hear your comments and associations. Also, is there anything that any of you do at home that has helped the discomfort? Heat packs? Cold packs? Salt-water rinses? I'm pretty stuck to soft foods as chewing is now a chore due to the pain and the lack of most of my teeth which are used for mastication.

Thanks all for plundering through my post. I pray you all recieve the Grace of swift and complete healing!

~Bim

 

KTeacher

Welcome

Welcome to our little club that no one wants to join.  You have been through quite a lot already.  Most of us have had radiation to head and neck area, no fun but doable.  Stick around and we will help you get through this.  You might want to check out the Superthread to get prepared for surgery and post.  Also information on radiation if you need to go that route.

longtermsurvivor

Hi Bim

As others have said, welcome to the club.  One aspect of your story confuses me.  Don't worry about this because I'm frequently confused:)  You've already had a biopsy that shows SCC.  And although you haven't said it directly, your worries about spread to other areas does not make it clear you have had a complete workup yet, including CT and PET scans, etc. But surgery is planned, which is a local excision.   I have trouble following the logic here.  Local exicsion is curative if this cancer is very early, lacking deep local invasion or metastasis.  If either of the above is present, however, it is not curative and radical surgery or radiation is going to be the treatment of choice.  I guess what I'm saying is I'm not certain why the current plan includes this local resection.  what am i missing here?

 

best to you

 

Pat

debbiejeanne

bim, i just want to say

bim, i just want to say welcome to our family and i'm glad you found us.  we will help you as you go thru your journey.  you have had a lot to deal with already.  people should never have to fight this darn disease but definitely not more than once :0( but many of us have and some are still fighting.  you will get thru this.  h&n tx is rough but you will get thru and we will help you.  that Barrett disease sounds really rough! i'm sorry you have to deal with that on top of cancer.  i'm praying for God to bless you with the strength you need to get thru tx while dealing with that.  also praying you have very few side effects.  please let us know how you do along the way.  also praying that the cancer is NOT anywhere else.  sending positive thoughts, prayers and excellent mojo to you.  we'll be watching your progress.  Happy Birthday!!!

God bless you,

dj

Grandmax4

I agree with

Longtermsurvivor, if you havent had all the scans that shows the surgical team..where the cancer is exactly, why is your ENT doing surgery? I had radical neck dissection in 2011 and my epiglottis was removed, along with lymph nodes. I was very blessed that the cancer had not gotten into my lymph system and no radiation or chemo was needed.

My suggestion would be a second opinion, hopefully, you are near a large cancer center, that does this testing everyday and then meet and see what is the best treatment for you

Best of luck and  we are always around to help you on your journey

 

PJ47

Sorry you have to join our group

First of all a very Happy Birthday to you!  I rember when I was a young 60 y.o lol. 

Agree with others that a thorough eval/work up is needed if it has not been done including PET/CT.  Also agree with others to go to a teaching hospital/cancer center with tumor board and many eyes that can help make a good treatment plan.  

Echo that stage one is very good and treatable!

Think I read somewhere that Barretts can contribute to head and neck cancer, along with smoking, drinking alcohol, HPV, Epstein-Barr virus, etc.

Would suggest you check with your MD about something to help you get some sleep.  Sleep deprivation can make one depressed as well as chronic pain and the  diagnosis.

Don't know if you have tried Melatonin, but it may help some and has few side effects.  I found it hard to sleep going through treatments for my head and neck cancer so some of this is normal.   

Take care and keep us posted about your progress,

PJ

 

phrannie51

Ok...welcome Bim!!!

Sorry about the duplicate post (due to my over-anxiety to have everybody read it).  Still....you've found the best forum on the interent for support and information.....LOTS of very smart people here!!

I'm going to assume you have or are going to have a PET/CT scan before they start widdling away on your tongue.....is that a wrong assumption?  I'm basing on the fact that I haven't met one person on this forum, nor any other forums who didn't have a scan to show all the Drs. precisely where the cancer is....the entire picture. 

As for the pain in your jaw and ear.....this could be "referred pain" from your tongue.....course only a scan will show that.  I only say this because the only "symptom" I had with NPC (Nasal-pharyngeal Carinoma.....cancer behind the nose).....was a pain in my breast bone.  I thought something might be wrong with my heart....or thymus cancer (all this I gathered from Goggle....LOL).  Never in my wildest imaginings did throat cancer enter my mind.  When a lump appeared in my neck, I thought Lymphoma (another Google gift).....

Don't fret about long-windedness.....you must be doing well in school......your story held my interest .....I'm just sorry it has to be non-fiction.

p

mingo

squamous cell

Hi Bim..I just joined today but I have a long history with scc. I was first diagnosed with scc bladder cancer, stage 4 in 1995. I had a radical bladder surgery at that time at City Of Hope in Duarte. They removed my bladder and made me a new one from part of my intestines. It work out well(no colostemy needed) and I'm very grateful for those excellent surgeons. Five years later in 2000 the scc came back in my right tonsil. It had moved into the lyph nodes so was considerd stage 4 once again. I had some intense rounds of chemo(lost the hair and a lot of weight) followed by a neck dissection where they got all the cancer (God bless those great surgeons at City Of Hope). They wanted to follow the neck dissection with 30 rounds of radiation which I declined. I was afraid of the after affects. They were very unhappy with me but I had 12 great problem free years after that and am very glad I made the dicision I did.  In 2012 the scc came back in the left side of my neck and the tumor was in a place( behind my jawbone) that was determined to be inoperable so I finally had to opt for the radiation. I have had nothing but serious problems since then and right now (2 years later) I have two holes in the roof of my mouth and the back of my throat. I've lost most of my teeth and I have trissmus to the point that I soon will not be able to get my dentures in and out because of the compromised jaw muscles. I'm telling you these things so that you know how serious the post radiation after affects can be in the head and neck area. The doctors won't tell you what I just did. If you have any other option I would suggest you go for it. If you have no other options at least you'll go in with you eyes wide open. I will keep you in my prayers. Also, I want to say a lot of folks come out of the radiation okay but I would question how much they are giving you. Above a certain number of rads can result in the kind of problems I have now. Ask a lot of questions. I wish I would have asked more. Good luck.

wmc

Welcome to the H&N

Welcome to the group and also sory you need to be here. When you said your ENT, did you mean your local or did you go to a major hospital. If not I do sugest that you consider a second opion from a place that has a tumor board. Their you ars seen by all the doctors at the same time and they "all" get together and decide the best for you. Remember level1 is so much better that 2,3,or 4, so that is very good and in your favor. Keep a positive attitude and you will overcome this as so many here have done. Also the pain in your ear is one of the symptons of throat cancer so try not to read to much more into it, it might not really be anything but your doctor needs to know.

Take care you'll beat this:

wmc   Stage3 SSC Larnix and modified radial neck dissection 86 glands with a laryngectomee, no RAD or Chemo;

hwt

mingo said:

squamous cell

Hi Bim..I just joined today but I have a long history with scc. I was first diagnosed with scc bladder cancer, stage 4 in 1995. I had a radical bladder surgery at that time at City Of Hope in Duarte. They removed my bladder and made me a new one from part of my intestines. It work out well(no colostemy needed) and I'm very grateful for those excellent surgeons. Five years later in 2000 the scc came back in my right tonsil. It had moved into the lyph nodes so was considerd stage 4 once again. I had some intense rounds of chemo(lost the hair and a lot of weight) followed by a neck dissection where they got all the cancer (God bless those great surgeons at City Of Hope). They wanted to follow the neck dissection with 30 rounds of radiation which I declined. I was afraid of the after affects. They were very unhappy with me but I had 12 great problem free years after that and am very glad I made the dicision I did.  In 2012 the scc came back in the left side of my neck and the tumor was in a place( behind my jawbone) that was determined to be inoperable so I finally had to opt for the radiation. I have had nothing but serious problems since then and right now (2 years later) I have two holes in the roof of my mouth and the back of my throat. I've lost most of my teeth and I have trissmus to the point that I soon will not be able to get my dentures in and out because of the compromised jaw muscles. I'm telling you these things so that you know how serious the post radiation after affects can be in the head and neck area. The doctors won't tell you what I just did. If you have any other option I would suggest you go for it. If you have no other options at least you'll go in with you eyes wide open. I will keep you in my prayers. Also, I want to say a lot of folks come out of the radiation okay but I would question how much they are giving you. Above a certain number of rads can result in the kind of problems I have now. Ask a lot of questions. I wish I would have asked more. Good luck.

Bim

Welcome to the group. Sorry that you had the need to find us. I am confused too as to whether all test results are in? I do imagine possible, like with a toothache, pain is often dispersed. As far as eating, try eggs, soft boiled or the like. Also drinking milk may make eating easier and soup & ice cream might be good options.

Prayers for an easy journey

Candi 

Ladylacy

Treatment

Just wanted to say that I'm sorry that you have to join the club.  But one thing you need to remember is that no two people react the same way to treatment.  My husband was diagnosed with SCC of the larynx in 2010.  He underwent radiation and chemo.  They thought he was cleared but in February 2011 he started having breathing problems.  Another biopsy and a trach.  Tumor was still there so we were sent to a head and neck specialist because our ENT said the head and neck specialist is who we needed to see because they were better able to do the surgery and correct any problems from the radiation that were found.  He had a laryngectomy in March 2011 along with a partial neck dissection and reconstruction of the back of his throat due to radiation damage.  At 74 he did great the doctor said.  He was NED for about 14 months when the specialist found a tumor at the cervical of his esophagus, again SCC, said it was a second primary.  He ruled out surgery because the tumor was small and contained, plus how bad the surgery would be.  My husband underwent another 35 rounds of radiation and chemo.  But he was only clear for 8 months when it was found that the tumor had reoccurred, grown and there was a spread to his right lung. 

Yes there are effects from radiation but then again many don't have any that are long lasting and the same goes for chemo.  My husband is unable to open his mouth very wide now and this is one of the after effect of the radiation.  All of his radiation was basically in the same spot.   Down the road there are other side effects from both radiation and chemo. 

Second opinions are great and you should see some one who specializes in your cancer and someone who has done the surgery a good bit and a hospital that has a good reputation.

Wishing you the best -- Sharon

Noellesmom

when is your PET scan

I see no mention of a PET scan, bimmer.  Why is that?

The head and neck region have a rich lymphatic system and you are correct that it could have gotten to your lymph nodes.

And while I know going through the journey has made me an alarmist by nature (!) an earache and pain in and around the ear can signal other cancers that need to be treated promptly, also  I wish I could tell you I think you have the luxury of recuperating from your tongue surgery but I would push for an immediate PET scan.

My husband had both base of tongue (BOT) and hypopharyngeal cancer.  Both were SCC.  You must definitely can have more than one cancer in the same region simultaneously.

Demand that PET scan.  If this doctor won't order, find one who will.