Hello Everyone, I'm Damien.
I was recently Diagnosed with Squamous Cell Carcinoma of the tongue. HPV Negative. I have completed my CT Scan which came back clean. Phew, but not out of the woods yet as I have read.
I am scheduled for my PET scan tomorrow. Who wants to watch the Super Bowl and eat wings and laugh at the commercials anyway. LOL

Anyway thank you all for posting so much Information about your experiences it is helping me understand the road I have ahead of me.

I do not have a surgery date but feel it will be coming fast.
It's amazing how unprepared you are until someone says you have Cancer.
I have lots of things to do to ensure no matter the outcome my family is taken care of.
I have two boys both young way 20's. I have a new 4 month old grandbaby that is cute as hell.
I am waiting to tell my family after I know the full treatment and recovery plan.

Any advise on how to break the news will be appreciated.

Hi Damien,
Welcome to the group.
I’m newly-diagnosed with the same, have surgery set for the 19th, and am awaiting scheduling a PET scan.
I told my family in a calm, direct manner—that I had a sore that wouldn’t heal, so I asked to see an ENT, who did a biopsy that came back positive for an early stage of cancer. Although they were surprised and a bit saddened, they were very supportive and check on me fairly regularly, which I’m thankful for as I’m single.
I’m a therapist, and some of my clients may become upset by this, so, I need to have a plan on how and when to deliver the news (should I need to be off for chemo, etc) after I recuperate from my surgery.
So, I share on different levels, depending on who I’m breaking the news to.
Good luck with your PET scan. I hope it’s clear.

Brenshere.
Thanks for the reply. I am currentky sitting in the waiting room for my PET scan. I am also hoping it is localized to just my tongue.

Also for you prayers and good luck your PET comes back clean.

I am a bit of a workaholic, ok who am I kidding here. I am a work nut. I shouldn't worry about work but am anxious about not working. I am also what my mom calls a Body in motion, so sitting around with a missing tongue and a feeding tube is not going to be easy. Heck if I stay home on a three day weekend I get antsy.

Anyway Good Luck and Prayers to you thanks for writing!

Damien

You’re so welcome! We’re all in this together.
It’s challenging to stop and put yourself first when you are always on the go and work a great deal.
Let me know what the PET scan is like!
Prayers that the cancer is local and you get good results.

Hi there DSapien. Sorry to hear about your diagnosis. Cancer has a way of intruding into our lives at the most inopportune time, bringing with it a whirlwind of thoughts and emotions. Your family will be your rock to anchor to in the weeks ahead as your treatment gets underway. Telling them that you have cancer won't be easy. I have no children, but it sounds like yours are old enough to understand. Having a get together may be the way to let your family know. Others here may be able to offer more advice. Keep us informed in the days ahead as you learn more. You can beat this

@ David,

Thanks for the reply. Yes I agree Cancer is an unexpected intrusion. I am still waiting to get PET scan and staging as well as the plan for treatment. I was informed early that at min there would be surgery. Just not sure yet about time away from work or recovery and therapy for speech.

Yes I was thinking a family Zoom or Web X so I can tell them at the same time.

Thanks again for the reply.

Brenshere,
PET scan was a breeze. Make sure and follow the prep for diet and fasting or they will not conduct the test.
I say it was a breeze as when I registered they brought me to a quit room injected the "day" not sure the name which was a bit cold. You can feel it pump through your body. No discomfort or pain. Then they had me rest on a bed with warm blankets for :45 min while solution worked through my body. I was told the solution worked through the body and helps to produce the best images for locating all the cancer within your body.

They scanned my head and neck then did a full body scan the whole process to about 2 1/2 hours with a small break in-between the two scans.
The scanner I was in was split in the middle and I just tested. I kept my eyes closed during the scan to prevent any clostrophobia from inserting.

I hope this helps.

I actually felt rested after my PET scan.

Thanks for the tips on the PET scan! I get mine next week. Glad yours is out of the way, and I hope your results are good.

A family online meeting would work really well. I did mine via telephone (2 siblings and each parent, so 4 phone calls in total). It wasn't easy saying it once, let alone 4 times

Good luck

Well I am doing it in person. I bought a plane ticket last minute decent deal. I figured while Istill have my speech I better say this in person.

Thanks for all the great ideas.

Hi Damien, sorry to hear of your diagnosis but welcome to the group.

Depending on the location of your tumor/what type of surgery you have, your speech may not be affected too badly. I had an SCC tongue and underwent a partial glossectomy with a flap reconstruction (used a bit of my forearm skin to rebuild the missing bit) in December and I was able to speak after a week. I have a bit of a lisp now but that's about it.

Try not to worry too much until you have a surgical plan and know what to expect! The waiting for answers is the worst part.

In terms of breaking the news like others said your kids are old enough to understand. Sounds like you have a beautiful family! In my case, I had a nonhealing lesion on my tongue and I had it biopsied but waited until I met with the ENT surgeon and knew what was ahead of me before telling my family, it's easier if you have answers to the inevitable questions they will all have.

Good luck! We are here cheering you on, don't hesitate to reach out with any questions!

Hi Damien

So sorry to hear of your diagnosis. I went thru a similar situation last March. Not a tobacco user and only a social drinker yet stage IV tongue cancer jumped into my lap at age 52. I struggled with how and when to tell our four boys (ages 17-23). My wife thought it best to tell them early rather than wait for my biopsy results and all the treatment details. FYI, my ENT doctor said "99% sure that is cancer" after less than a minute of visual examination.

We ended up telling the boys early before the biopsy verified it as SCC. I realized I was more afraid of taking away their security. Note, I am the single source of our income, maybe some male bravado there too, my wife stayed home with boys for 23 years and counting. And, telling them makes it "more real."

But, I had no idea how their love, support, and strength would help me through. We told close family/work after the biopsy, and then extended family/friends once we had a complete surgery and recovery picture. The emails, letters, texts, and phone calls were so powerful and helpful. I look back now and think I could have opened up to more people earlier. I am also a fairly open person. For some people who are more introverted, this may not be the right path.

We are not big fans of social media. We did everything thru email lists, text, zoom, and phone calls.

Stay safe and keep the faith.

Nels