I have only found one other person with this cancer,there must be more out there,i read that it is aggressive,im scared,would like to hear some encouraging survivor stories of this tumour if possible

I have had this. It is Squamous Cell Carcinoma (SCC) of the buccal mucossa. There have been several members with this as well. You are NOT alone!!!!

Please add a signature when you are able to. That will help us to help you by knowing where you are in your treatment timeline and a brief history of what you have been thru. Are you in the US?

A cancer diagnosis does not always equate to a death sentence. I have gone thru this 3 times and I have lucky survived. I know its scary, with our support we can help you to get thru this.

HI there... it can be an aggressive cancer. Ideally you want to move quickly. There are several people here who have had it so as Christine says... you are not alone. Just remember there really should be no ambivalence with regards to treatment as time is of the essence. You should be treated at a top CCC - since they see and treat this cancer all the time and know what works. Try not to freak out... though I know the word cancer is terrifying. You have to be diligent with this cancer, and be aggressive back. What you are facing is not fun... no one here will lie to you. But you will get through it. Educate yourself on the standard treatment, you are your best advocate. hugs, welcome and sorry you have to be here, but this is a great resource...

I was diagnosed with SCC of the buccal mucossa of the left cheek a year ago. I had it surgically removed and a flap from my forearm put in my cheek. I decided not to have radiotherapy as I had clear margins. It is scary but it is beatable.

I had a petscan it showed cancer in one neck node,im to have a neck dissection,i have had a sore tounge that comes and goes but petscan showed no other cancer cells present anywhere in my body

From what you just wrote I can see that you have started down the road to acquiring the knowledge that will get you through this without going nuts in the process.

Cancer is like that, in the beginning we are diagnosed but we know absolutely nothing about the disease. Diagnosis is the car wreck that put us in the ditch. Most of us only heard (or remember) a little of what the doctor said in that first meeeting and we are scared absolutely to death. We all went through this, so welcome to the family.

When my tonsil cancer was diagnosed they kept using the word "invasive". Initially I kept thinking that word meant fast growing, so I was really freaked out; am I going to die before they even get treatment started. Eventually I figured out I should ask my doctor about it. He just chuckled and said invasive is just a synonym for you have cancer. Non-invasive means it's not cancer. And no, you are not going to die before treatment begins.

That story kind of describes the information journey we are all on with this disease. Sadly, in the beginning we are on an impossibly steep learning curve; we have a LOT to learn in a short period of time. But, we hang in there, listen to the advice of our forum brothers and sisters, read what they tell us to read and learn a little more every day. A week or so later that learning curve shallows out enough that we can actually sleep at night because we are just mildly scared, then later it flattens out some more; we have learned enough to accept the demon in our body and now concentrate on getting on with the treatment. For me that happened about week 3 of radiation (8 weeks after diagnosis). From then on "scared" has stayed away from my door.

After treatment is over many leave the forum; they don't really need the support anymore. But, some of us stick around, to help the new guys climb out of the ditch.

You're going to do just fine. Hang in there and keep reading. You will get there.

Tony

Okay.. scans are finicky.. they only pick up a cancer that is a certain size. MICROSCOPIC CANCER IS NOT PICKED UP ON A SCAN. If you had a node pop up then there may be a primary somewhere else ( a few people have had an occult primary - but often they are later discovered elsewhere. If you are complaining about tongue pain. I would wonder if perhaps you have something going on there and it has spread to the node. Even superficial t1 tongue tumors can spread to a node if they are aggressive. (A tongue tumor doesn't have to present as a lesion or sore either - sometimes they grow inside the tongue as a tumor - palpating the area will tell you if there is potentially something going on there.)
Are you at a CCC? I would advise getting a second opinion at one if you aren't. This cancer can be tricky. It's best to have an ENT very experienced in Oral cancer.

A neck dissection is not a hard surgery, but it would be helpful to be certain that there isn't a primary hiding somewhere, before you go in and have to have another surgery after the fact.

hugs and best of luck.

im assuming that the buccal mucosa cancer was the primary,ent thinks it went to my node before surgery,i didn't know I could have another primary?,im still new to this

It is rare to have 2 different locations of tumors at the same time. I also had 2 tumors in different locations when I was first diagnosed. My first tumor found was on the inside of my left cheek. the second one was behind my top left molar. they were independent of each other, separated by about 2".


PS... Please use the info I sent you with the private message (PM) to make a signature. It really is very important to help us help you.

No sorry I missed that you'd had a buccal mucousal cancer duh.. Yes that would be your primary - if you have nodal involvement then are the looking at possible rads and chemo as follow Up?

just an update,neck dissection showed 4 nodes affected,i am now to have radiation,not on my cheek but my neck,getting quite scared now,i keep thinking im going to die

Mandy, I know it sounds easy, but try to breathe and relax. I'm sure all of us have had the same thoughts. I still feel that way some days, even 10 1/2 years later.

Mandy... I can't tell you not to be scared... it would do no good. and realistically you have a right to be scared. What I can tell you is that there are a lot of people here who've been where you are and they are still around to tell the tale. Everyone is different, so looking at stats etc.. only tells half the story. Focus on your health now. What can you do to make this go as smoothly as possible. Eat healthfully, consume as many calories as you can now before you start radiotherapy - plan for the worst - hope for the best and do whatever you can to try and get back to normal after.
Pain management is important if you are sensitive to pain let them know. Radiation is okay the first 3-4 weeks, the last 4 weeks are not so much fun - know this and prepare for it. (even if you are only having 6 weeks of radiation the first two weeks following are the worst) I am not going to lie and tell you it's a cake walk. I had a relatively easy time of it and it was still highly unpleasant. Know yourself - know what soothes you and indulge in that. I like long baths. When I was really hurting and feeling crappy, I would grab an ensure and take a long hot bath. I would lay on the couch (with a cloth, my blanket, my rinse and something to spit into (Gross I know)) and watch aimless television shows. I did this for about 2 weeks at the end. I forced myself to walk my dog though, and meditated a bit. This soothed me. Find out what works for you. I found my waterpik was my best friend. And I stocked up on liquid nutrition and mild flavorless soups (nothing that burns)
You will get through this. Read up on the fall out from radiation and then see if you can figure out what would work to offset those particular issues. Nutrition and hydration are very important. Up your protein intake now if you can and maintain it. Stock up on lip balm - (lips get very dry) - buy a good cream etc... hugs and we are here when you have any questions.

Mandy, I think it's safe to say that pretty much everyone here has been that scared at some point. The wait before starting treatment can be one of the hardest times. It sounds as though you're doing everything you need to do to beat this. You're not alone!

hello,havent posted in nearly a year,things haven't been good,as you know had cancer of buccal mucosa removed nov 2013 and node involvement feb 2014 and then 6 weeks of radiation,cancer returned to buccal mucosa may this year,this time I had to have my entire lower jaw removed,partial removal of top jaw and partial floor of mouth,had a flap from my thigh and muscle from my thigh put in my mouth,they where going to use a tibia bone to replace my jaw but didn't, I cant have radiation as ive been radiated in that area before,they are very happy that they got 10ml clear margins,now to watch me very closely,i don't know where I go from here as I think its my last chance

Im very sorry to hear you havent been doing well and you had another recurrence this year. The surgery you described is a major one! Recovery from that can be a very long road.

Its not easy to avoid worrying about having the cancer return again, especially after what you have been thru. A recurrence is the biggest fear we all have. I used to be so spooked about having a recurrence that I wouldnt even read anything in the Recurrence section. Now I look back and realize there wasnt anything that I could have done to prevent it from happening. Maybe it would help if you try to concentrate on things within your control. Many patients (caregivers too) seek a therapist to help them manage their fears. In the US some counselors work primarily with cancer patients. Would it be an option to find someone to speak with from your treatment center?

Hang in there!

can someone please explain Erbitux,i aasume its a chemo but then i read that it is used in conjuction with chemo,i start Erbitux on monday with radiation for a recurrence,why is nt mine with chemo as well

Yes, Erbitux is a type of chemo. Sometimes its used in combination with other types of chemo.

Im sorry but Im unsure of what you are asking with .... [quote]why is nt mine with chemo as well[/quote]

Im sorry but the link for the word Erbitux isnt working. Maybe this can help?

Erbitux info

sorry,what i was asking was how do they determine who needs Erbitux and who needs it in conjuction with other chemo.my oncologist said its the rollsroyce of treatment but then i read that its quite toxic and people prefer cisplatin,is there a higher cure rate by adding chemo to radiation,im just abit confused about how it all works,this is the first time ive been offered anything other than radiation

Please understand that we are fellow patients/survivors and caregivers without medical backgrounds. While I try my very best to help answer questions based on what Ive learned over the past 8 years here, I have not had any medical training or education. So please always also check with your treating physicians as well.

When adding chemo to radiation for treatment of oral cancer it helps the radiation to be more effective. I think Ive seen somewhere that it adds 10% better results than rads alone.

I believe here in the US, doctors go by a flow chart put out by the NCCN (National Comprehensive Cancer Network). On the main OCF site we have page after page of very detailed info about this. I thin there is also a link to the NCCN site. This probably would be a very good start to learning more about how treatment plans are devised.

OCF Main Pages, Treatment Guidelines and NCCN Info

Best wishes with everything!

thankyou,will have a lool

Mandy,

I'm surprised your medical team didn't recommend chemotherapy combined with radiotherapy in Feb 2014 - seems standard treatment in this part of the world (just my opinion). Maybe your oncologist can provide answers.

Hope everything goes smooth for your first chemotherapy treatment next week.

Karen

hi karen,it seems in australia its not that common to combine the two unless you are in a advanced stage.ive had it 4 times in 2 years and this is the first time chemo has been offered

Mandy, I wish you the best in 2016, and with your treatment.

I had Erbitux and Taxotere, along with radiation in 2012. Erbitux or Cetuximab is actually not a chemo, but is a targeted therapy, a monoclonal antibody that works on the epidermal growth factor receptors (EGFR). It's also really an early immunotherapy drug, but I also refer to it as Chemo for simpler explanation.

I believe that Cisplatin is usually the preferred chemo, but Erbitux is now approved for first line, recurrent and metatastic treatment for head and neck cancer. A number of factors can be used in consideration for Erbitux use, other chemo for that matter, including patient co-morbities, kidney function, extent of disease, etc. Actually, Erbitux was said to be the least toxic of all when I was initially going through treatment in 2009, and the worst being the notorious facial rash, which was allegedly indicative that its working, which such thought has somewhat changed over the years. When I did mine, I found it not as easy as purported, but was doable, and recently, it is found that some toxicities, besides rash, such as mucocitus, is worse than Cisplatin.

As mentioned, pretty much the NCCN guidelines are used by the doctors, but are not set in stone. Chemo or targeted therapy can be used as a radio sensitizer to make radiation work better, and there have been quite a few studies on its efficiency by adding it to radiation, namely Dr Bonner, if you care to read further, in addition, there are quite a few discussions here about Erbitux if you look in the search feature.

Erbitux can be combined with other chemo's, as Induction Chemo, Palliative Chemo, as mono-therapy, but some reports I read mentioned disappointing findings when combined with Cisplatin or other platinum based drugs. Mine was with Taxotere, and recent reports show positive results with that, but I did have a recurrence a year later, so apparently it didn't work.

Erbitux was said not to work in about 5% of head and neck cancers, and there was no assay to test that in head and neck cancer patients, unlike colorectal patients, where they test the KRAS mutation since it doesn't work in 40% of those patients, so if they don't have the mutation they don't get Erbitux. There is a new drug given to help with EGFR resistance, and not sure if they do any new assays particularly for head and neck cancer, but I haven't heard of any, others, yes.

That said, the first week is usually the loading dose, 400mg, and every week thereafter, 250mg, along with a corticosteroid to help with allergic reaction. There are two black box warnings that your medical team will be on the lookout, which rarely occur, and usually during the first or 2nd infusion, and that is a severe allergic relation, and heart attack. Any unusual symptoms should be repeated immediately, and all such is usually explained.

The others are the notorious rash, which is indictive of an EGFR inhibitor, and us not to be used as findings the drug is working or not. The other was the mucocitus, hand and foot syndrome, dehydration, and I also needed a blood transfusion midway through. The rash may occur 1-3 weeks after starting, mine was after a week, which mine was controlled by minocycline, and there may be different ones at this time, and for the extent of rash, as mine was mild. The worst part, was the itching postures, especially on the arms, legs, back, scalp. I was told to use head and shoulders for dry scalp, dove soft soap for sensitive skin, as well as the aquaphor or cetaphil cream after radiation.

http://www.cancernetwork.com/head-n...inked-high-toxicity-head-and-neck-cancer

http://www.ascopost.com/issues/november-1,-2014/adding-cetuximab-to-chemoradiation-did-not-benefit-patients-with-advanced-head-and-neck-cancer-what-were-the-reasons.aspx

http://www.cancernetwork.com/head-neck-cancer/docetaxel-regimen-tops-cisplatin-head-and-neck-cancer

I hope this helps, and if you have any questions, just ask, if I can help.

Yo. Paul. Happy New Year. you stuff off PM, send me a contact email. Don

I didn't realize that, Don, so I just updated it. Happy New Year!

ive had 2 doses of certuxamab so far,rash is starting to appear on my chin,headache and stomache cramps,but dont feel to bad,started radiation again today as well,i was meant to be having 35 rads but im only having 21,dont know why as dont see my oncologist til friday??. they cut the face out of my mask which made it alot easier,very quick 7 beams only 20 seconds each

Glad the rads are going well. Without the face part pressing down it would be a lot more comfortable.

Best wishes.

7 rads left and 2 certuxamab left,going well,rash annoying and suffer headaches but so far so good,havent needed a feeding tube yet either,i hope this works

Hang in there, Mandy! Sounds like you are doing pretty good with everything. Usually its about this point where it gets pretty rough. Keep pushing to take in enough daily calories and water to help you get past these last few days. Take it day by day and soon you will be past the hardest part. We are here to lean on, good luck!

Stay positive - keep a good attitude. My husband is 8 weeks out now - we are at MD Anderson for our results if cancer - base of tongue Stage IV. It has been a nightmare but we made it send you can too. The healing past is 10 times worse than the treatment sorry to say. Do day by day even hour by hour if you have to. My husband still struggles - no surgery - has his tongue but only half of it works same in throat area. Very hard for him to swallow - has a feeding tube.
He will make it through his faith and will to live and so can you.

all finished with treatment,now to wait for more side affects to kick in before it starts to get better,feel glad its over but nervous about the future,i handled the certuxamab quite well,a moderate crusty rash but no nausea or tingling or anything,radiation was worse,have a ct scan in 2 weeks and then i dont know

Congrats on finishing your treatments, Mandy!

If you continue to focus on your intake it will help your body to heal. If you struggle with swallowing, push yourself to take small sips of water at a time. Every day get the minimums of 2500 calories and 48-64 oz of water. Im sure this will not be easy for you right now. Most patients feel their worst when just finishing rads and about the first 2 weeks afterwards. For many their swallowing reflexes are compromised right about the end of rads. The swallowing muscles can quickly forget how to function properly which is why I mentioned it so you can avoid these issues. Check with your doc if its ok to add high protein whey powder to your diet. This helps promote faster healing.

Hang in there and check in from time to time to keep us posted on your progress.

Best wishes!

2 weeks since finishing certuxamab and rads,dont feel to bad,very,very, itchy and burn taking longer than normal to heal,getting very nervous about my 10th of march scan and appointment

Wishing you well, Mandy. It seems like a good sign that you aren't feeling too bad after all you have been through. What can you do to take your mind off the 10 March scan? I know how hard it can be. Keep us informed about how you are recovering from treatment:)

7 weeks out from treatment,1 clear ct scan,back to the dr on the 18t April,every 6 weeks for the first year,im hoping i can acctually go a full year without a recurrence,taste starting to come back,still having issues with pimply rash from certuxamab,goes away then comes back

All sounding very positive Mandy. Yay for clear CT scans. I will keep everything crossed for continued NED.
Tammy

time for another check up,comes around to quick,getting alot of pain and tingling and nerves doing funny things in my face,im hoping its just things rejuvenating after my major surgery nearly 12 months ago,any one have a really dry nose after surgery,it doesnt run anymore,when i sneeze it comes out my mouth not my nose,because its always so dry it cracks and gets sores in it