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Joined: Jun 2019
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"OCF across the pond"
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"OCF across the pond"
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Joined: Jun 2019
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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


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
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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.


I spent all my wishes, wishing times were good. When I still could.
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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


Maria 33 when diagnosed with SCC, partial glossectomy with skin graph from thigh,rt side nodes removed,ten nodes positive, PEG, 30 RAD tx, 1998. Scans clean.30 HBO tx-Massive dental work 07-08, ORN present 2009.
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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!

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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

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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! smile

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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!

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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

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