Hello everyone, I have just spent some time browsing and wow, what a lovely community.

I have very recently been diagnosed with a squamous cell carcinoma of the left lateral tongue, not yet staged. Hopefully localized and not spread to any lymph nodes. I have a CT of head and chest tomorrow and then I will follow up with the surgeon next week for a definitive treatment plan. Most likely partial glossectomy, neck dissection, flap reconstruction? Scary. Possible radiation therapy after that although they haven't decided yet. Surgeon wants me to have my surgery in 4-6 weeks, so that's good I guess.

I'm shocked and processing. I am young, 31, non smoker and very light drinker. Completely healthy otherwise - had a sore on my tongue that didn't heal, went to the dentist and had it biopsied a couple weeks ago and here we are. No idea where this came from. It feels surreal to say the words 'I have cancer'. I feel so brave and optimistic when updating my family but I am pretty shaken up. Due to COVID I am allowed no guests/visitors at my appointments so while my partner and family are very supportive, in some ways it feels I am going it alone.

I guess I don't really know what I wanted to say except hi, hopefully I will be checking back in over the upcoming weeks and months for some moral support. I like to arm myself with information so I have been reading about a lot of your experiences and while I'm nervous of how this diagnosis may change my life you all are managing and finding the time to come here and cheer others on! I am grateful for that and hope I can do the same. I'm glad I found you.

Martha

Hello Martha ,I had similar HPV negative cancer i had my surgery last October and had a flap and neck dissection 2 nodes involved, you didn't say if your was HPV+ from what I was told if its HPV+you don't need surgery just chemoradiation and HPV+ respond very well to treatment we will be here to support you i know the feeling and emotions you are going through I found lot of great information and support from here when I was so scared good luck

Hi Paan, nice to meet you! I am not sure of the HPV status, but I will definitely have surgery. No mention yet of any chemotherapy, just possibly radiation postop. Next week I have a follow up with the surgeon and rad onc to hear their treatment plan, so I will make sure to ask about HPV, adding it to my list!

Thank you for taking the time to respond! It is very reassuring to be able to speak to others who have had very similar experiences. This forum is a goldmine. I hope you are doing ok!

You are welcome Martha,take care we are here to support you

Hi Marta,
I'm so sorry to hear about your diagnosis. You are most certainly in the right place though.
I too was diagnosed with SCC in my tongue. It was HPV negative. I had surgery followed by chemoradiotherapy, plus immunotherapy.

It's a difficult journey, but one where you are supported thoroughly by members on here. No question is a bad question , but do take time to go through the boards to see previous discussions and advice.

Be well and take care

Hi and thanks Dizz_zzey. Yes since I found this forum I have been spending a lot of time here, this is all so new for me and I am finding it comforting to read through some posts, there is so much information and support.

Take care also!

Hi Martha

I went thru a very similar process that it sounds like you might. I am 52, non-smoker, life-long athlete, light drinker, small sore pops up on tongue last year, stage 4 squamous cell carcinoma biopsy result on March 12, 2020. Surgery to remove half my tongue, rebuild it and all lymph nodes pn my right side was April 1. SCC found in one node. Radiation treatment was late May thru early July. Nobody allowed in the hospital or radiation visits with me due to C19.

It's a long process but I can tell you today, I am full go at work and exercise. This forum is an excellent source of support and information that I did not find until after most of my treatment was done. Good on you to be here now.

I had so many questions when I was in your seat. Please feel free to ask anything. I mean anything. I will send you a private message too as that is sometimes easier.

We are here to help and support. You can do this.

Nels

I was diagnosed in March of this year/surgery in April. I totally understand being scared. INFORMATION OVERLOAD! I tried hard yo stay off google. Luckily, they got everything in one surgery and the radiation oncologist didnt think I needed radiation, so I consider myself very lucky. I only had a occasional earache and my "symptom", then one day as I was brushing my teeth, i hit a "sore spot" and after digging around in my mouth i find a "lump". Im still nervous and scared. I worry. I have stayed cancer free for now. This place really is awesome. You dont hear much about oral cancers so finding this place is amazing.

Hi Martha,

I hope you are doing ok. If you ever need someone to talk to, please feel free to reach out. I'm 32 and went through this 6 years ago. For support, questions, and information you definitely found the right place.

Best,
Kat

Relate to you 100 percent. I was diagnosed with cancer of tongue yesterday and had a ct scan and getting a pet scan on Thursday then back to dr next Tuesday for results. Praying like you that it had not gone anywhere else. Surgery end of next week. My prayers🙏

Hi Martha
I'm sorry to hear of your diagnosis. I was diagnosed in 2019 with SCC in the left lateral tongue. The tumour sadly went diagonal into the right so I no longer have a tongue. It was pretty scary stuff, I was 39, been married for nearly 4 years and had only been in my new job for a year. I was frightened and didn't know what to expect. Being on this forum has helped me massively in the sense that I've been able to ask so many questions, I've read lots on here and was able to prepare myself mentally for everything my medical team threw at me.
Take your time to get your thoughts together and do read on here. Whilst the stories that people have shared might never happen to you, it's great to be informed for the 'just in case' moments

Hi Martha
I too am newly diagnosed. I just had surgery (partial right glossectomy and neck dissection) on the 7th and like you, due to COVID I had no one with me. I think it was the hardest part. My fiancée dropped me off at the front entrance of the hospital and I was “alone” until he came to pick me up the neck day when I was discharged. It was scary, I won’t lie, but the hospital staff (from the front desk security guard to the nurses and CNAs) were wonderful and I was rarely really alone.
I got my pathology report last week and unfortunately it spread to me lymph nodes so I’ll start radiation in a few weeks (I meet with oncologist on Tuesday so I’ll know more).
Like you my emotions are all over the place but I’m trying to remain positive and drawing from all of the words of comfort and encouragement I’m getting from friends and family.

I’ll keep you in my thoughts as you go through your journey.

Hi Martha
I was 33 when i was diagnosed.I had my tongue resected and nodes on rt side of neck removed. My surgery went great, no issues. But since the ca spread to my nodes i had to have radiation. Thats where all the long lasting side effects occur. Teeth, jaw, tongue, salivary glands are ALL affected. I have been through it all. I am cancer free 22 years but I have osteoradionecrosis of the jaw.
If you need to vent or just want to talk, Im here for you!
Maria

Hi Mjm62672, thanks for your reply, I hope your surgery went well!

I had my surgery Dec 7 and it was hard being alone. I was admitted for 8 days with no visitors allowed. I cried to the poor nurse one of the days as I was so frustrated with the trach and sad about my situation. I got through it though and felt great after surgery, I was lucky in that my pain was pretty minimal and I bounced back quickly in terms of my ability to eat and swallow. Unfortunately pathology showed the cancer spread to one lymph node with extracapsular extension so I now need chemo in addition to the radiation therapy.

I am on week 2/6 of radiation and starting to feel the effects - my mouth feels dry and tongue feels like I burnt it on hot coffee. Lots of foods are losing taste. Sensitive to tangy and acidic things so I am phasing out anything too spicy. So far not too much pain so I am hoping that persists!

The chemo was not terrible, I had 1 of 3 doses of IV cisplatin last week. They armed me with lots of good anti-nausea drugs and steroids so I didn't feel too rough, more like I had a bad hangover for a few days. However I am having some ringing in my ears so I am concerned about long term hearing loss. Meeting with the oncologist tomorrow so will find out more about that.

Having said all that, I hope you are doing OK! There are a lot of scary stories on here but take it one day at a time. Did you meet with a dentist to check your teeth? The radiation messes with your healing ability in your jaw so if you have any issues they will extract or do any necessary work before rad starts. I needed my wisdom teeth removed, but luckily everything else was good. You will also need to do fluoride treatments nightly forever, so make sure you get fitted for trays as well.

Sounds like we are on a similar journey but I am a few weeks ahead of you so if you have any questions don't hesitate to reach out! Good luck!

Hi Maria, thanks for your response. Wow I am very similar to you - 31 and spread to lymph nodes as well. Same surgery too except my graft is from my wrist. Currently in radiation, my teeth are in good shape so hopefully not too many problems down the line but it sucks that I have 2/3 of my life still (fingers crossed! hah) and these teeth have got to last! I have started nightly fluoride gel treatments and am getting into the habit of being quite militant with my oral care routine.

I wear guards over my teeth during the treatments...not sure if that offers any protection, I assume no as they are just soft plastic.

I'm glad to hear you are cancer free for so long! Sorry about your jaw issues, I probably have that to look forward to down the line as well.

Thanks for the lovely support! Hope all is well with you.

Martha

Hi Nels, replied to you privately as well, but I just wanted to say I am happy to hear you are doing so well these days.
Covid sucks! But at least I am realizing that maybe I am stronger than I think as I go through all this alone, so there is that!

Hey Idaho, so glad to hear you only needed surgery. Yes it's really hard to find info as oral cancer doesn't seem to get the same attention as some of the other types. However family and friends have told me about like 3 other people they know with similar diagnoses so it's certainly out there. This place really is a goldmine and everyone seems is so kind.

Hope you are doing well!

Hi Kat, thanks for the reply and support. I hope you are doing well these days! My oncologist certainly scratched his head about where this came from, as I have no risk factors and this popped up out of the blue.

Doing well so far, had surgery in December and now I am 2 weeks into radiation and chemo since there was lymph node involvement. So far not terrible, fingers crossed things keep going fairly smoothly although the side effects are starting to pop up. Hopefully I can keep ahead of it all with my arsenal of meds, I see my rad oncologist as well as a nurse weekly to monitor my symptoms, so I think I am in good hands. All the instructions from my care team are matching up to people's advice and experiences here, so I feel confident I can get through it all!

Take care,
Martha