Diagnosed with SCC on base of tongue

Lisa, let me give you a brief rundown of my story. I was diagnosed in 2006 with SCC of the base of tongue which had metastasized to my lymph node. My cancer was found when the lymph node was removed. When I awoke from surgery my husband told me it was cancer. I said, "really? hmmm." My sisters rushed 3 hours to visit me, came in crying. My exact words to them, 'why are you crying? This ain't nothing and its not going to be what kills me." A year after my treatment my doc said, " I can tell you this now. I didn't think you were going to make it" I was shocked at this. Found out my family thought the same thing. It never once dawned on me that I could die. To this day, I still don't realize how sick I was. And that is what I believe kept me alive. I told my husband that I was either too stupid or too stubborn to let cancer win. So my advice to you, my friend, stay positive and don't worry. If you go into something thinking it can beat you, you are losing before you start. I'm not saying its going to be easy, but stay positive. And of you need someone to talk to that's been there, I'm here for you,

Lisa, I was diagnosed with HPV16+ OSCC base of tongue in March 2023 at 56 years old. Of course I was very fearful at the time. Since then I have learned that this type of cancer is very treatable and successful. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed. Also, I completed 30 rounds of Proton Radiation in July. As of today I would say I am about 85% back to normal . It is a SLOW climb back . You will have CT scans and throat scope every 3 months for a year or two to monitor any recurrence. You should ask your doctor about the NavDX blood type which detects HPV16 cancer in the blood as it will help once you are being monitored. Thanks to God I have had 4 negative NavDX blood tests in a row and good CT scans and scopes. Good luck to you and stay positive. I leaned on my Faith then and I still do !

Hello @rakga, I'm so glad you found Connect for support. It sounds like your husband's cancer has been discovered at an early stage and that should be helpful. My SCC was in my ear, not oral cavity, and it was ongoing for many many months before a diagnosis was made. It was involving bone but lymph nodes still clear so Stage III. Unfortunately I have had metastatic disease, but with the new Immunotherapies approved for Head and Neck cancer, I am currently cancer free. My initial surgery was in April 2012 so celebrating 12 years soon! Mayo Clinic has been my life saver with all my surgeries done in Rochester, MN. I can't stress enough the importance of advocating for yourself/husband in the cancer treatment journey. Never hesitate to pursue a second opinion or ask for a referral. STAY POSITIVE. The road may be rough, but there is a light at the end of the tunnel.

Hi, I am new to this group and so thankful it is here.
I was diagnosed with SCC 11/28/2023, 3cm lesion inside my right cheek. The one thing you have to do is be your own advocate. My wonderful ENT informed me that SCC in the mouth can spread quickly and that it has to be removed immediately. Back story, I was aware of the lesion end of August but thought it was a canker sore(I have never had one), two office visits basically confirmed until it got so painful I went in again and was referred to an ENT. He immediately diagnosed cancer on 11/17/2023.
My ENT took biopsies to confirm the cancer and said he would get me in somewhere as soon as possible but the facility may not be close. Well, my local hospital couldn’t fit me in for surgery until March, he got me in at a hospital two hours away and I had surgery 01/04/2024. Never any mention of chemo or radiation as when you’re dealing with mouth cancer that can be devastating.
I had the surgery, they cut out 5cm in my cheek…replaced the skin from my wrist and removed 28 lymph nodes…28 of 28 tested, no cancer. It was painful and I am still recovering but no chemo or radiation and I am cancer free.
I see my ENT on 03/11/2024 for follow. 🤞🏻

Hi @ljhopkins Lisa and welcome to our Head and Neck Cancer group, not words you ever hoped to hear. I completely understand the worries going on inside your head. The changes in your routine, the halt of life, financial, plans, not to mention the battle you must and will endure.
A wise person (my Grandmother) once told me that if there was an eleventh commandment, it would say “Thou shalt not worry.” That’s God’s job and you doing it won’t change a thing.
Know this, there are people here who understand and will listen. They can give advice and answer questions. You have joined a community of patients which can make a difference in how you handle this in the coming weeks and months. We are with you.
Do you have any immediate concerns?

Hi @june7 and welcome to our group. It sounds like you have things under control for now. If you have questions don’t hesitate to ask. Will you eventually have a Chemo and/or radiation follow up or are you good to go?

Thank you for reaching out. Just anxious to start my chemoradiation on March 22. Tues, I have my simulation, for my head gear. 7 weeks of treatment.

Hello @ljhopkins,
It is a good feeling to be starting treatment to kill your cancer, no matter how difficult the treatment may be. I found the radiation treatment to be rather frustrating at times, but overall quite tolerable. Don't forget to wash your face and neck to remove any lotions prior to each daily treatment. I did and was sorry. If skin burns get too painful, I found second skin burn patches a good way to stay comfortable. Rather late in treatment Jeans Cream was recommended and I really liked that, more than the Aquaphor. I suppose there are many new ones available now. Magic Mouthwash helped a lot with tongue ulcers and I also had a topical oral lidocaine gel to use prior to eating. You will get through this but it isn't fun. That last treatment......then the healing begins.......that's what you set as your goal.

I just joined here, and have gone through what your husband is now, mine was 2.5 yrs ago. Same area, about the same size carcinoma. By now you have hopefully made contact with an
Oncologist. I am 2 yrs clean after going through 7 weeks of radiation and two chemo sessions. It was not easy. I lost 90 lbs., needed to..just not this way!
You’ve caught this early. My oncologist gave me a 95% chance of complete recovery, and I was ecstatic. My oncologist and his team decided NOT to do surgery first, and I’m so happy they didn’t. Would have been way more challenging rehab. I won’t bore or scare you with the expectations. I’m here if you have any questions but I trust you’re in good hands with your team. The oncologist is the captain, there’s a radiologist, and ENT surgeon on his/her team. Best wishes to you and your husband. 🙏

Hi @twalkman23 and welcome to the Head and Neck Cancer support group. Your input is helpful and valuable to so many. I am glad you joined us here.
I understand you are doing well which is excellent. Patients helping patients is so valuable to the medical community. I am just popping in to say welcome.