Yesterday my oral surgeon called to let me know my biopsy was back, diagnosed as Squamous Cell Carcinoma. He mentioned something about it being 'well differentiated'. I have had a long history of tobacco use and about 6 months ago, I developed lesions on my left cheek and behind the upper lip (left corner). For 4 months, I was seeing a different oral surgeon who was treating this as candida but obviously never improved. I saw another oral surgeon who recommended the biopsy. It took 2 weeks to get approval to see the new oral surgeon, another 2 weeks to get the authorization for the biopsy. Now I am waiting for the authorization to see a head and neck surgeon. (yes, HMO). I'm just wondering if the long delay has caused it to spread a bit. Any way, thanks for listening. And I'm so glad I found you.

Samar

Welcome to OCF, Samar! Im very sorry you have a need to use our site. We will help you with info and support you before, during and after treatment. Best thing to do is to look forward. Dont sweat anything you did in the past as its not possible to go back and change anything.

Im wondering about your tobacco use. Have you quit using tobacco (in all forms) yet? If not please do your best to wrap your head around eliminating it from your life forever. I was a smoker too. The light bulb finally went on for me as I drove to get my feeding tube consult. I was so repulsed at the idea of having a feeding tube and it dawned on me I had created the entire situation. I got so mad at myself for putting my childrens futures in jeopardy. I looked over at my 17 year old son and said .... "Thats it, I quit!!! I will never smoke again!". I then threw the entire pack of cigs right out the window as I drove. Im not a litterbug either so that move was fueled by my anger at what I had done. Ive been successfully tobacco free for almost 10 years now and I still remember that incident like it was yesterday. Im telling it to you to encourage you to quit like I did. I smoked for 25+ years and quit cold turkey. If I can then I know you can too

Good luck!!!

Thank you your reply, Christine. Means a lot to me. Yes I have quit. In all forms. That was only 2 months back. Never, ever again! After reading your signature, I'll be happy to be half as strong as you.

Im sure you are much stronger than you think. If I can do it anybody can. We will help you get thru this.

Congrats on quitting smoking. Its not easy but you did the right thing.


PS... Ive sent you a link that includes how to add a signature. Click on the tiny flashing envelope next to the My Stuff tab.

Samar

Delays in diagnosis can result in cells moving to other areas as well as initial site tumor growth. Probably not the best thing to think about right now.

More important is to not beat yourself up for using tobacco products and ending up where you are now. (It's great that you stopped and that you have not faltered. My father-in-law was dying of lung cancer and still could not stop.)

Now that you have the diagnosis, the hard part starts.

Develop a strong support system of people to help you over the next few months. Dealing with the surgeries and treatments can be quite stressful without having to worry about paying bills, housekeeping, work, and life's other daily stresses.

Set an area aside at your house / apartment for comfort. Blankets / place for meds / pillows / etc.

Get familiar with your health plan coverage or have someone available that you can count on to handle any insurance issues

Head and Neck cancers tend to be aggressive and the surgeries and treatments required to become cancer free are extremely hard on the surrounding organs and soft tissue

Focus on becoming cancer free and set goals or milestones on how to achieve it.

I think most people on this site will acknowledge how important it is to be emotionally and mentally prepared for the steps required to rid yourself of cancer. Don't get caught up in the numbers or drama. This is your battle. Be as prepared as possible.

Good Luck

Samar,

Welcome to the forum although I'm sorry that that you have the need to join this circle of friends.

Both Christine and bjmpittsburgh have given you good advice, particularly what Was said about becoming familiar with your insurance coverage. Do you have a family member or friend who can support you when you go for doctor's appointments and treatment? These visits to the hospital can often be overwhelming to the patient, so having another person by who can take notes or prepare a list of questions you may have together with you and to remind you to ask them can be very helpful. You haven't seen the head and neck oncologist yet, so there's still time to make these arrangements.

Keeping you in my thoughts.

Thank you all for your advice and support. Yes, my wife will be by my side as she has always been from the time I met her. The hardest part is waiting for the referral to the Head and Neck surgeon. I'm hoping on Monday. Then scheduling the appointment. Stomach is all in knots.

Samir,

I'm sorry you had to join this site, but welcome, and see you've already been given sound advise. Waiting is the worst, and hope you get your ENT appointment soon!

Right now, everything is still to be clinically defined, even location of the primary tumor, but it sounds like oral, and the staging by TNM grading system. Primary Tumor size, involvement (T), number of Nodes involved, dimension (N) and Distant Metastases (M), and other factors, helps guide your treatment plan.

To help with this, your ENT may do a visual. palpable and fiber optic exam. There are other tests as part of the work-up like CT, MRI or PET scan, endoscope under anesthesia, to see if other areas are involved, such as the lymph nodes (N), synchronous or metachachromous cancer, distant metastases (M).

Some CCC's like to do their own biopsy, pathology themselves and or review the original slides. "Well Differentiated" is the Tumor Grade, which shows how aggressive a cancer is. On a positive note, it's better to have it "Well Differentiated", G1, the lowest grade, but I don't believe that changes the type of treatment your team will decide. In cases of HPV oropharyngeal cancer (tonsils, base of tongue), then it's a good thing to be Poorly Differentiated, G3 high grade, and most are.

For SCC, Squamous Cell Carcinoma treatment, and depending on a number of factors, it can be only surgery, radiation, chemoradiation or a combination thereof.

I recommend everyone keep a record of all pathology, scan reports, CD discs, surgery reports for future reference, and for any 2nd or 3rd opinions, which I've sometimes done.

If you care to read further, more information is on the OCF pages.

Good luck!

Hello. I had my surgery on April 3. I don't know if I have the right terminology but it reads like this: 'Excision of carcinoma to left buccal region. I had this done at the USC Keck Medical Hospital. My frustration is (mostly on me) I didn't ask enough questions and unfortunately wan't told what to expect post-op. briefly, after a 6 hour surgery I woke up the following day in ICU. The left side of my face was huge. Left arm was bandaged as the skin was taken for the flap in my left cheek. And skin was removed from my thigh and grafted to my arm. I was cut from the center of my lower lip, down and toward my ear.

It's been a little over 6 weeks. I am rather despondent as the flap in my mouth has not shrunk even a tiny bit. It's pretty much taken over the left side of the mouth and at times tends to protrude just a bit. The swelling along the jaw and below the chin had gone down about 20-30%. I'm also going to lymphedema and speech therapy once a week although I don't think my speech as changed much (I'm told). I'm told it could take months for the swelling to comedown and perhaps longer for the flap to reduce and debulk. I have started eating from the right side of the mouth (not a pretty sight) and the G-tube should be removed next week.

Is all this normal? Am I worrying too much? They tell me it will be a new normal. I wish I know what exactly that meant. And by the way, there was no radiation or chemo done. Except for the face and cheek area, I have no other problems. I just wish to have a fairly normal life...go out to eat, travel, socialize. I realize I'll never get my old life back but close enough will be great.

Thank you for your time. Any advice and opinions will be invaluable.

Samar Im very sorry to read about what you have been thru. By spending time reading thru posts and also on the main OCF site, you will learn about your illness and become a stronger advocate. This will also help you with what questions to ask your physician about your recovery.

When I was going thru rads, I kept hearing "new normal" on many replies. Eventually I finally learned exactly what that term meant. Everyone has their own unique reactions to treatments, medications, recovery, etc. The new normal is whats left after going thru treatment and recovery phases. Its the new and improved person after they have recovered. The new normal may have some long lasting side effects but they are as well as they can be and as close as they are able to be to their old lives. Im sure in time you will get to your new normal and begin to accept the changes you have been thru. Hang in there! Your new normal is many months ahead at the time when you have made many more advances in your recovery.

Being 6 weeks post surgery, you still have a long way to go with your recovery. The majority of patients will have most of their swelling go down by 2 or 3 months post op. For a complete recovery, the inflammation continues to slowly recede months down the road. Adding high protein whey powder to your diet helps to speed the healing, get your doc to ok adding this. Down the road you can get your surgeon to do some reconstruction to help make your tongue more comfortable. Usually the reconstruction is done after waiting to the one year mark post surgery, but some surgeons will do some minor tweaking 3+ months post surgery. You may benefit from having a speech pathologist work with you, they can do wonders with helping patients who have had your type of surgery.

Hope this helps you to feel a little more positive. You will improve it just takes time. Best wishes with your continued recovery.

Your new normal is what you make of it. Look at the positives. Your cancer free. You can still chew and swallow and your speech hasn't been impacted to much. The swelling will go down. it takes time and that's something you now have. Look around the next time your back in the hospital or doctors office for follow up appointments. There are many people in the oral cancer world that would give anything to be as well as you. Remember that and be thankful for the life you have.

Thank you for your kind words of encouragement! I do seem to get rather impatient. I agree, 6 weeks is really not long enough, specially after this kind of surgery. Will hang in there and be positive. I'm sure attitude and state of mind affect recovery as well.

I hope all is going well for you ,Samar.