Hello All, I’m new here. I was diagnosed with floor of mouth squamous cell carcinoma (under my tongue.) I had surgery in January - they did a resection...took muscle arteries from my arm to put under my tongue and also took my lymph nodes.I was T2 N0. I was told they were able to get it all and that my pathology looked good - great even. Radiology would not be needed but he planned to discuss my case with the cancer committee at the hospital. THe surgery was brutal, the recovery IS brutal. I’m still swollen - neck, tongue, speech is bad, just generally achey but in general feel lucky. Hoping - probably uselessly - that my speech will clear up when the swelling goes down in my neck and under my chin. I fear it won’t though. I think this is the new me.

After my doc met with the cancer committee, i had an appt with him and a radiologist who said it was 50/50 on whether i needed radiology or not. My tumor size was on the border of not needing and needing it. THey wont decide for me but i suppose it lessens my chances of recurrence if I do have the radiation. It’s 6 weeks/5 days a week. I’m eating toward doing it, i definitely do not want this cancer back but upon reading here and also other places it seems like a huge deal to put myself through if I do not have cancer anymore. I’m just not sure. Any thoughts from any of you guys? I am meeting with the radiologist and also my surgeon on wed to check my swelling to see if I am even ale to begin and I have a dentist appt on Thursday to make sure my teeth are ok.
Thanks in advance! I am a 51 year old female in NY state.

Find out if it was HPV or smoke/drink related. If smoke/drink, you'll want to abstain from both to avoid a second round of cancer.

Regarding radiation, that will be your decision so if you have any questions about the medical advice you're getting, you'll need advice you trust.

If they tell you that scans show no cancer and they removed all cancer surgically, that sounds promising.

just speaking from experience, my husband did not abstain from drinking beer...quite heavily since he lost his job and just sat for 3 straight months so far. it looks like he's got the cancer back from the PET scan, biopsy on Tuesday to determine the next step.

He did have HPV 16 and someone must have told him that drinking was fine, I just don't buy into it being a good idea nor would I risk it. I think the body needs all the good it can get and no one needs alcohol to survive. just my opinion so take it for it's worth!

Welcome to OCF, DeeDee! Im sorry to read about what you have already been thru. Im sure you will find our group helpful with info and support as you face whatever your future holds. As a group of fellow oral cancer (OC) patients/survivors and caregivers we all speak from our own experiences so its not always possible to find someone who has been thru the exact same situation. Plus everybody's different and will respond to medications, procedures, etc in their own unique way.

You will find tons of info reading thru posts here on OCFs public forum and also on the main OCF site. The link is below but also can be easily accessed from clicking on the OCF Website link at the bottom right of any page.

Main OCF Site

Best wishes with your continued recovery. I do have a suggestion for you to ask your doc if you could add high protein whey powder to your diet to help increase your protein intake. Protein helps to speed healing. Maybe it would help you so check with your doc.

I smoked and drank up until the day of surgery. I didn’t drink a whole lot, mostly socially but I am a social person and my job involved lots of schmoozing and having cocktails was just part of it....anyway those days are over. I smoked pretty heavily...it was hard to quit but the Alan Carr book really helped me. I occasionally sneak one - like maybe once a week but I don’t enjoy it that much. It’s more a matter of getting away with something I shouldn’t be doing I guess. I’m weird.

I’m meeting with the rad doc and my surgeon tomorrow morning. My tumor was 5mm and I guess that is the “line in the sand” anything over 5 gets rad and anything under does not. My surgeon told me all along that i would not need rad - even after the surgery...it was only when he met with the cancer committee and I guess half of those docs thought I should and half said not necessary. His RN told me it was 50/50 on whether i needed it. I def don’t want this to come back so i guess I should but honestly, the side effects sound horrible. Quality of life is everything to me. If I am forever going to have trouble speaking and eating - and then all of the side effects from rad - is it really worth it? Once a radiologist gets involved will h/she always push for rad/chemo?

THe things I enjoy doing the most - going to restaurants, eating out, brunches, tasting food, - TALKING - i used to talk a lot - are the things I don’t do well anymore. I don’t leave my house if I can help it except for doc appts. On top of all the other crap, when they did the surgery they got that sticky brown antiseptic in my hair and after laying there for 10 days i basically had a giant dreadlock/knot of hair which mostly pulled out once i got home and was able to tackle it. I cant even hide behind my hair anymore. All of this is so petty but I am so miserable living like this and I don’t see an end in sight. I see it only getting worse after I do the radiation.
Sorry for the rant.

I know things look pretty crappy right now but with time things get better, I promise. Yesterday I went my doc at the CCC for my 5 year checkup (all good).
I remember that five years ago (right after the operation) my view of life was one heck of a lot different than it is today.

I will not sugarcoat this for you. I had a T1N0 diagnosis and had a partial glossectomy on the right side of my tongue. The swelling will go down, your speech should improve once it does, if not, make an appointment with a speech therapist. I used a speech app on my phone for about a week after surgery until I could speak without pain. I have no speech problems at all now, two years out from surgery. My surgeon gave me a 50/50 opinion about radiation so he presented to the tumor board. They recommended radiation. You should wait until you are healed from surgery before starting. I do not regret having radiation, yes, it was extremely unpleasant, yes, the side effects are bad, but I do not regret it. Especially after reading about recurrences here, I wouldn't want to go through this again, if possible. Radiation treatments are brutal and some of the side effects may be permanent. I had mouth sores and mucositis, lidocaine helped with that, to be able to swallow anything. I did not go out except to go to radiation for about 4 weeks. Percocet became about a 24/7 drug by the end and for a couple weeks after, do not be afraid to ask for, and use, pain medication. My radiation oncologist prescribed two 60 pill prescriptions for me, I thought that seemed extreme but I used almost all of them. I lost 35 pounds, I tried to find high calorie fluids but being lactose intolerant and lack of wanting to eat took it's toll. Really, the mucositis was the worst, I had a spit bottle always at hand for that, not pleasant. After treatment, in time, things improved but I am not back to pre radiation condition. For a while my taste buds were off, they did improve but I still don't enjoy chocolate, fresh fruit, sweets in general don't taste as good. Saltiness is a good flavor and I can eat anything except for things that cause my mouth to dry out like acidic things, most fresh fruits and nuts. Salad isn't good either. Saliva has not come back to normal, I am still really dry and have to always carry water around with me, this may be permanent also. It's entirely up to you to decide whether or not to endure this treatment, it's rough, you will need help to get back and forth to appointments and help at home, my husband and I are retired so that was easy for me. You will not be as you were before, but you can learn to live with the changes. You may not want to go out during treatment or for a few weeks after. On my last day of treatment I flew to Texas, not a good plan, to then drive back home over 5 days. I had trouble finding things to eat that tasted good while my family were eating steak! It will just take time to recover and time will tell what the side effects will remain permanent. If I were in your shoes, with your diagnosis, I would still go with radiation. It will be the hardest thing you will endure in your life, but depend on your medical team to get you through it, they have all the tips. Best to you whatever you decide! Feel free to pm me if you wish.

Thank you so much for that.

My husband has just finished six weeks of radiation and chemo. After his surgery one year ago we were told his margins were clear and no further treatment was needed. When he went back for his first set of scans, they found a recurrence so further treatment was no longer optional. He had a second surgery the week before thanksgiving and six weeks after that, started his treatments. It is tough, but with results “on the line” I think you should strongly consider it. They gave us a 95% chance of no recurrence but we were in the unlucky 5%. You are being well-advised to go to a Comprehensive Cancer Center, but it is also important to go to one with a strong program for Head and Neck patients. We originally wanted to do the follow up treatment at a CCC near our home but were told that they didn’t do enough Head and Neck. Out of the programs that were recommended, we decided to go back to the CCC where the original surgery was done. The social workers offered to help us find housing, but luckily a relative could host us. It really makes a big difference being treated by people who deal with Head and Neck all day every day. If you go through this, you want the best possible result. They have been incredibly supportive in helping my husband deal with the side effects. Good luck and let us know how you are doing.

My guy is at 2 weeks into radiation and chemo. So far, so good with only mild side effect. We were also told no chemo needed but upon further review by his team it made sense. He decided to do chemo to avoid any chance of doing this whole thing more than once. I have to say everyone on his team has been wonderful, listening to all questions, taking the time to explain and re-explain. Having a cancer center that specializes in ENT made a huge difference, thank you UH in Cleveland!

One day at time continues to be our mantra!