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Hi - Newly diagnosed SCC tongue #200545
11-16-2020 02:45 PM
11-16-2020 02:45 PM
Joined: Nov 2020
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MarMarMartha Offline OP
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MarMarMartha  Offline OP
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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

Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200547
11-16-2020 08:26 PM
11-16-2020 08:26 PM
Joined: Sep 2019
Posts: 46
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Paan Offline
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Paan  Offline
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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

Re: Hi - Newly diagnosed SCC tongue [Re: Paan] #200550
11-18-2020 06:11 AM
11-18-2020 06:11 AM
Joined: Nov 2020
Posts: 3
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MarMarMartha Offline OP
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MarMarMartha  Offline OP
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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!

Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200551
11-18-2020 09:09 PM
11-18-2020 09:09 PM
Joined: Sep 2019
Posts: 46
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Paan Offline
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Paan  Offline
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Posts: 46
You are welcome Martha,take care we are here to support you

Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200552
11-19-2020 08:01 AM
11-19-2020 08:01 AM
Joined: Jun 2019
Posts: 227
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Dizz_zzey Offline
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Dizz_zzey  Offline
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Joined: Jun 2019
Posts: 227
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


F 39 x-smoker,non drink
05/20/19 T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Pembro pre & post surgery
RIG 08/10/19
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
No doing too bad smile
Re: Hi - Newly diagnosed SCC tongue [Re: Dizz_zzey] #200557
11-20-2020 07:20 AM
11-20-2020 07:20 AM
Joined: Nov 2020
Posts: 3
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MarMarMartha Offline OP
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MarMarMartha  Offline OP
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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!

Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200568
11-24-2020 07:55 AM
11-24-2020 07:55 AM
Joined: Aug 2020
Posts: 27
Huntington Beach, CA
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Nels Offline
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Nels  Offline
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Joined: Aug 2020
Posts: 27
Huntington Beach, CA
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


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200576
11-30-2020 01:50 PM
11-30-2020 01:50 PM
Joined: May 2020
Posts: 5
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Idaho Native Offline
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Joined: May 2020
Posts: 5
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.

Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200628
01-13-2021 01:12 AM
01-13-2021 01:12 AM
Joined: Mar 2014
Posts: 34
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kfisher Offline
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kfisher  Offline
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Joined: Mar 2014
Posts: 34
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

Last edited by kfisher; 01-13-2021 01:13 AM.

3/2014: 25, no risk factors (nonsmoker, rare drinker, HPV negative) SCC right lateral tongue, T1N0M0 - well-differentiated; surgery - removal of tumor, salivary gland + neck dissection
11/2017 - ovarian torsion
12/2018 - basal cell skin cancer



Re: Hi - Newly diagnosed SCC tongue [Re: MarMarMartha] #200629
01-13-2021 03:43 AM
01-13-2021 03:43 AM
Joined: Oct 2018
Posts: 5
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Hinda Offline
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Hinda  Offline
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Joined: Oct 2018
Posts: 5
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 prayers­čÖĆ

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