Buccal mucosal squamous cell carcinoma

barbvedd

Hello there! I am a 51 year old woman who was recently diagnosed with squamous cell carcinoma right buccal mucosa.  Started with what I thought was a cheek bite in Decemeber.  It would not heal properly, and in January at my normal dentist appointment he was concerned and sent me on for a biopsy.  Got the call Feb 6th that the biopsy was positive for SCC.  The next week I had a first and second opinion, a CT/PET scan that showed no sign of metastisis.  I met with the multispecialty head and neck cancer team, and have a 10 hour surgery scheduled for March 12th.  

They are thinking it is stage 2 based on size, but will do removal of the tumor with a radial artery free flap, skin graft to wrist from thigh and a lymph node dissection on the right.  If any nodes are positive or not able to get clean margins then may need to follow up with chemo and/or radiation.  I am terrified of waiting this long 28 days between appointment and surgery. I feel like it is getting worse every day in my mouth (might just be because I know it is cancer), but I am freaking out.  

Any words of advice from those who have been there?  Thank you!

big G

Long wait

I had base of tongue cancer the only advice I could give you at this point is to pray, trust in your medical team, prepare your mindset to take on this new challenge in your life. My wait was about 3 months it seems for ever but you will be fine. If it is determined that you need chemo or radiation come back and start a new thread there are a lot of good people on this site that would be willing to share their experiences and give some tips and recomendations to help you through these treatments. Good luck!

wbcgaruss

barbvedd Are you Scheduled

For any chemo or rads as a follow up to your operation-just wondering. Also would like to tell you to calm down if you can your medical team I figure is making sure they have the best plan ready for your situation to make sure it is done right. After all, a 10-hour surgery is nothing to sneeze at. Let me tell you it is hard to relax when you know the cancer is there because you just want it out now. Understood but My story is I was first found to have throat cancer in late November of 2012. Then they set up an appointment for PET scan and it comes back clean for the rest of my body-Thank God. Then meetings with the oncologist, chemotherapy people, and nurse navigator etc. meanwhile they are working up a plan for my cancer treatment for my case and I started treatment the first week of January 2013 I believe January 2. So I was about a month or a little over till treatment started but I believe there is a lot of stuff going on in the background that we don't always see but your team is working to give you the best outcome for your case. So try to put it in perspective that you can do 28 days, you can hang in there and then it will be taken care of. Also prepare for post surgery you will have recovery and healing to do and so this cancer stuff is not easy but you will get through this and we are here for your support also-stay strong-God Bless and Prayers Your Way-Russ 

barbvedd

big G said:

Long wait

I had base of tongue cancer the only advice I could give you at this point is to pray, trust in your medical team, prepare your mindset to take on this new challenge in your life. My wait was about 3 months it seems for ever but you will be fine. If it is determined that you need chemo or radiation come back and start a new thread there are a lot of good people on this site that would be willing to share their experiences and give some tips and recomendations to help you through these treatments. Good luck!

Thank you for your comments! 

Thank you for your comments!  I am down to a 17 day wait now.  Trying to stay busy.  I am terrified of the 10 hour surgery but just want this cancer out.  I appreciate your comments, lots of praying all the time.  Have great prayer warriors!! Good luck to you too!

barbvedd

wbcgaruss said:

barbvedd Are you Scheduled

For any chemo or rads as a follow up to your operation-just wondering. Also would like to tell you to calm down if you can your medical team I figure is making sure they have the best plan ready for your situation to make sure it is done right. After all, a 10-hour surgery is nothing to sneeze at. Let me tell you it is hard to relax when you know the cancer is there because you just want it out now. Understood but My story is I was first found to have throat cancer in late November of 2012. Then they set up an appointment for PET scan and it comes back clean for the rest of my body-Thank God. Then meetings with the oncologist, chemotherapy people, and nurse navigator etc. meanwhile they are working up a plan for my cancer treatment for my case and I started treatment the first week of January 2013 I believe January 2. So I was about a month or a little over till treatment started but I believe there is a lot of stuff going on in the background that we don't always see but your team is working to give you the best outcome for your case. So try to put it in perspective that you can do 28 days, you can hang in there and then it will be taken care of. Also prepare for post surgery you will have recovery and healing to do and so this cancer stuff is not easy but you will get through this and we are here for your support also-stay strong-God Bless and Prayers Your Way-Russ 

Thank you for your comments! 

Thank you for your comments!  At this point they are not sure about chemo and radiation.  I did meet with the medical oncologist and the radiation oncologist.  They are waiting to see if they are able to get clean margins as it is pretty far back in my mouth.  They are doing a right neck dissection although the PET/CTwas negative, and they said if any of those lymphnodes come up positive then chemo and or radiation would be necessary.  So many unknowns.  Scary stuff.  I am praying constantly, and trying to stay busy.  Thank you so prayers and support.  Barb

akahaka

https://csn.cancer.org/discussion/318745/buccal-mucosal-squamous-cell-carcinoma

Your story is very similar to mine. Hello I’m 73 and was also diagnosed with Buccal Mucosa cancer in October 2025 I had my surgery a week ago 1/7. I had the lesion removed and a flap done also a neck dissection. I just received my pathology report this morning and all the lesion was removed and local tissue and lymph nodes all came back clear of cancer. I still have to have treatment (radiation) but I will know more when I see my doctor for post op. He did tell me I would need a second Pet Scan in 3 months and bloodwork in 6 months. I’m just dealing with incision discomfort in the neck area.

ronog

Hello folks. I’m 61 yo male who just had a surgery for high grade dysplasia with suspicion of superficial invasion of cheek. I received and foolishly reviewed the pathology report prior to my 2nd post-op visit with the surgeon (the first was to remove the bolster holding the skin graft in place) and though I was in the clear. The 2nd follow up early last week to discuss the findings was a shock. I have buccal mucosa cancer and they’re going back in two weeks to take out some jaw bone, lymph nodes and as a parting gift, I’m getting a temp tracheotomy (sorry, I deal with this stuff through humor. Otherwise I’ll just be a mess). I’ll be in the ICU for a few days.

So: I feel horrible for my wife and three adult children. I feel like I let them down. I’m not afraid (maybe foolish of me) but I can’t get a good answer on survival rates and I’ve learned Chat GTP is wrong. A lot.

Maybe long term prognosis is good. I don’t know. I see there is a high rate of recurrence, but I don’t want to think about that yet.

I’m rambling. My head is spinning. I do not know what to think. 6 months ago I was breaking boulders apart with steel wedges and a 5 pound hammer. Now I feel like I’m staring down the barrel of doom and I left my family hanging out to dry. What the actual hell just happened?

MarineE5

Ronog,

I am sorry to read that you are dealing with this demon, yes, it is a rough road, but you will eventually be out there breaking boulders once again. Each individual reacts to Surgeries and Treatments differently. Try to stay away from any advice Dr. Google gives you because often times it is outdated. I am a Base of Tongue cancer survivor, much like you, I use wedges and an 8 pound sledge hammer, but it is to split tree rounds. My cancer was in 2004, so we can't believe everything that is written there. It's not the size of the dog in the Fight, but the size of the Fight in the dog that counts.

Like you, I had a Temp Trach and a Feeding Tube. The Feeding Tube was removed after about 6 months, Trach was sooner. You can do this and remember, you are not letting anyone down, I repeat, you are not letting anyone down, not even yourself so don't beat yourself up.

My Best to You, Your Family and Everyone Here

ronog

Thank you MarineE5 for your positive feedback.

So you have been cancer free for how long, 22 years? That’s pretty great if my math is right.

I think just all the unknowns is what’s driving me nuts. That, and TBH the surgery is scary as hell. But, no choice, no dilemma.

Thanks again Sir!

wbcgaruss

Hello, ronog, and welcome to the CSN H&N discussion forum.

So sorry you find yourself in this place but it is a good place where we all help and support each other in the toughest of times.

I double ditto what MarineE5 said he has great insight and knowledge and first hand experience and what he tells you, you can take to the bank.

I also have been where you are along with MarineE5, suddenly there are lots of ifs in front of you. You are facing treatments you never imagined you would be facing, these things only happen to the other guy, in your mind the situation looks dire, but take heart, like I said we were there also and we are still standing after going through the worst of it. Like MarineE5 said you will eventually be out there breaking boulders once again.

I have had Head & Neck cancer 3 times, the first of which started out with a sore throat in late 2012, which turned out to be throat cancer. I had a port and a feeding tube for that situation. Lots of chemo and 35 radiation treatments. About 5 years later I had a small spot on my tongue which turned out to be cancerous and was treated with surgery and clear margins were achieved by my ENT. Then about a year and a half later I had a sore neck and went to my ENT and he had me get a scan and found cancer and ordered a biopsy which confirmed it. I don't think he liked the looks of it and due to previous radiation he sent me to Hershey Hospital in Hershey, PA, a teaching hospital for the operation to remove the cancer from my neck. it was a lymph node not encapsulated and the cancer had spread. I was told by the surgeon that I would be released in a day or 2 but due to numerous complications I ended up spending 36 days there with 6 operations for various things including a trach and feeding tube and a Chyle Valve issue, etc. After that I was released to a hospital rehab for 10 days. I left the hospital with a temporary trach and feeding tube. I tell you all this not to highlight myself but to let you know that in the H&N cancer world what you are going through is not uncommon and to tell you there are many on here who have, like MarineE5, and me, and others that have gone through some of the most difficult times of our lives but you must persevere and take it day by day and you will be victorious in your situation you now face.

And as MarineE5 said don't google too much but if you do stay with reliable sources like Johns Hopkins, hospitals and clinics that you feel is a real source of valid information.

And yes, don't beat yourself up, there is no need to feel horrible about yourself, you are like many on here and we got cancer and there is no need to blame yourself or anyone else, you just need to focus on your situation and move forward one day at a time. You are not letting anyone down, you just have cancer and now you are in a fight and you will win, keep a positive attitude is of utmost importance. Above all i believe you will find your wife and adult children to be your best supporters in this matter, embrace them for this and I think you will find this cancer situation will bring your family closer together and more bonded than ever.

You can't go by general survival rates on your cancer because all H&N cancers are invariably different in different areas and encompassing different degrees of spreading and involvement. Your survival rate is what you make of it. But you should get a full recovery and as you can see by MarineE5 and I that you can go on to live a normal amount of years with your family and breaking boulders. Trust in your care team and lean on them for whatever you need. Most places and teams that treat cancer have someone on call 24 hours a day so reach out if you need to. If you feel so inclined get a second opinion, it is a common thing nowadays but if you trust your care team no problem. I assume you have a good ENT, they are essential and many times direct your treatment and will monitor you after the fact for all your follow up and monitoring of your recovery.

You stated: "Now I feel like I’m staring down the barrel of doom and I left my family hanging out to dry. What the actual hell just happened?"

Well, left untreated it is a barrel of doom, but trust me they are so advanced these days in treating cancer that it is not like the old days where the diagnosis of cancer is a death sentence, especially H&N cancer. Your family was not left hanging out to dry, now is the time to draw them closer and get ready to battle this cancer. What happened was you are now one of the percentage that is afflicted with H&N cancer. The good news is these days it is very curable.

Also if you have not been assigned a Speech Therapist ask your care team about this, you should have one for this journey. They are all things H&N to help with swallowing, speech, breathing, taste, etc., all things H&N. A speech therapist may want to give you a swallow test before treatment begins to have a baseline test result for later.

Swallowing and Speech Rehabilitation for Head and Neck Cancer

https://www.youtube.com/watch?v=A4mGbLQiL3g

I am getting long winded here so let me wind this up and be frank with you. This is not going to be easy or a walk in the park, and it may be the most difficult thing you have ever done in your life. H&N cancer treatment is said to be difficult to downright brutal. You will have difficult days but that's what they are and just do one day at a time, that's all we are given anyway. I will never forget my radiation nurse in a pre-treatment meeting stressing for me to prepare myself for throat cancer treatment and how difficult that it would be and knowing my case told me that I might as well figure a year till I was through treatment and feeling mostly myself again and she was spot on.

Every doctor meeting or consult you go to take someone with you if possible. Two sets of ears are better than one they will be throwing a lot of information at you and the sheer volume of it and your emotional state will not let you remember it all. And absolutely take along a tablet and pencil or pen and write stuff down, you will never remember it all. Also record the audio or take a video of your meeting so you can refer back if necessary.

And trust me in this cancer journey you will meet some of the most caring dedicated and loving people. They sincerely care about their patients and are doing their best to give you success in battling this evil beast.

I am also going to post some videos below to give you inspiration from people who went through cancer treatment and fought the good fight to beat this beast and it shows you they had tough time but prevailed and you will too. Also some with general support and one about a wife caregiver, I will list that one first.

Also I know myself it helped me to pray a lot and put my trust in God, Jesus Christ and the Holy Spirit.

When I felt my best and when I felt my worst I trusted in God he never failed me."

Our Motto here is "NEGU (Never Ever Give Up)"

So-Wishing you the very best…

Take Care, God Bless

Russ

Videos Below:

Kristi’s Letter – Head and Neck Cancer -- Being A Caregiver -- A Tough Job of Love

https://www.youtube.com/watch?v=QJPhL14mf6M

The Caregiver Balancing Act It's Not Easy

https://www.youtube.com/watch?v=MUGRjyI_8mo

With Love Me Compilation Of People In Remembrance Of Past Cancer Situations-Emotional

https://www.youtube.com/watch?v=8oLPGDzBF6w

Biggest Emotional Challenge Of Hearing You Have Cancer

https://www.youtube.com/watch?v=pz50YQ4N2fU

Having a Good Support System Is Essential

https://www.youtube.com/watch?v=9SbYJ_wDO1E

Mark’s Story-Hodgkins Lymphoma-Multiple Rounds Chemo-Recovery-Mental & Physical

https://www.youtube.com/watch?v=CEwu0IAlufs

‘Just Never Give Up’ Message From A Cancer Survivor

https://www.youtube.com/watch?v=F_eQTrvGUZc

Also, I recommend when you get a chance check out the "SuperThread" at the top of the page on the home page of the Head and Neck Forum here. It is a gathering of information, links, videos, etc. to help those dealing with H&N cancer.

wbcgaruss

ronog

Russ, you put a lot of thought and time into this message. Thank you very much. Yep, as you and MarineE5 said, I am done with “Dr. Google.” Information is all over the place.

I suspect the surgery is going to be a bear to handle, but I’m not worried about handling that. My wife and kids are good and they let me know they are there for me. I am truly blessed. That is the thing I have taken from all of this: how lucky I am to have each day. Life is tough, but life is good brother! Damn good. Every day has something great to offer, and I’m grabbing it and then trying to pay it forward.

I have a great care team at a world class cancer center in Boston, so I know I’m in good hands. Again, it’s not me I worry about. But my family insists they are good, so that is what I’m going with.

I’ll have a look at these videos. Thank you very much!

Ron

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