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#201794 03-01-2023 09:43 AM
Joined: Mar 2023
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Hello all,

My name is Mike and just got my biopsy report today that showed gingival squamous cell carcinoma-moderately differentiated. It started a few months ago with just a sore spot on my left upper gum above the rear molars. Thought it was gingivitis but eventually it got biopsied by the OM surgeon at the office and here I am.

I'm 55 and semi-retired after working nearly 30 years at the University of Michigan Health system in the medical field. We moved to FL last year and now I wish we would have stayed in Michigan and kept working a little longer!

Anyways, that's my obligatory introduction. I've got a weeks wait to get to my PCP for the next steps. Hopefully I won't have too long a wait to get the necessary scans and figure out a plan.

Mike

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Hi Mike...are you anywhere near a Comprehensive Cancer Center? I have heard there is an excellent one in Jacksonville FL. You need to be your own advocate..no one else will. Push until they move faster. I recently discovered a small spot on my tongue (I am 15 months from my original diagnosis of Squamous Cell Cancer of tongue). Got in within a week, they biopsied it that day and got my results today..a recurrence, but precancerous.
They will call me in a couple of days with a surgery date. This is how fast things need to move. Not trying to scare you, just want you to know time matters. Keep us posted of your progress. Sending prayers.

Trixie2 #201888 05-03-2023 07:58 PM
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Hi Trixie, thanks for the reply. I did get in at UF Jacksonville with a good surgeon. After imaging was done and tumor board review, I had surgery for a left maxillectomy and modified radical neck dissection.
They did reconstructive surgery at the same time using my fibula and free flap. I just got the path report which shows clean margins but did have 3 lymph nodes with cancer and perineural invasion so it looks like I'll be getting radiation and chemo. The surgeon seems optimistic but speaking of scary, doing google searches on prognosis and 5 year survival for my situation seems pretty dismal.
Thank you for the prayers and hope your surgery goes well.

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Hi Mike,

Welcome to OCF. You have already been through a lot. The stats can be shocking but there are plenty of people that pull out a full and active life well past 5 years. I recommend a book called AntiCancer. It is stacked with all kinds of data and ways to help reduce our chances of getting (or recurring) cancer. Also, a short but good read, google cancer is like finding a lion in the fridge. Makes me both laugh and cry every time.

Sending you full recovery prayers. Hang in there and keep us updated on your progress.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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I’d stay away from Google. It’s got a lot of information for sure, but most of that probably does not apply to you. It will only mess with your emotional state. It would be impossible for a lay person to sift out what is relevant and not, more it’s full of data that has been superseded by newer information. Last, much of even science data has bias in it, which there are many types of, and that makes the information tainted. Knowing how to recognize bias in research articles comes from many years of reading them.

Prognosis information is the worst. Remember that we are each unique biological entities, similar but not the same. Descended from and containing a unique genetic make up that we inherited, and which is not universal. Who gets cancer, who survives it, may have some commonalities drawn from big defining categories, our gender, our race, ethnicity and other broad brush strokes. But we are much more individuals and unique than those definers that much of statistics has to be limited to. Even using those has flaws. Black men get oral cancers more often than white. Is it something biologically different about them? No. It’s because as a group they engage in more risk factors, primarily smoking. If you are a black man that doesn’t smoke, none of the oral cancer numbers in many studies apply to you. These are the flaws in statistics that when applying them to any one person make them useless. Your future, the remainder of your life, is going to be determined by much more than this. Don’t dwell on this. Tomorrow is promised to no one. Live each day fully present in it, how many more any of us have cannot be predicted.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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I second staying away from Google and oral cancer stats. All your life you have been told “you are unique - there is no one like YOU”. Well, you are going to find out that is true. My oncologist surgeon would never give me a prognosis (I was Stage 4 twice) - he would always say: “I can’t promise that you will get home safely”. And he was right. No one can predict what is going to happen with YOU and how YOUR BODY will react to the treatments. We are truly individuals - and it will never be more apparent than with this disease.

Don’t catastrophize. Take every day as it comes. Cancer is a thief. It steals the treatment time and it steals other time from your life when you let worry overtake you.

Step by step. OCF is here.

Donna (Pandora99)


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)

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