Hi everyone,
I’m Tobias, and I’m new here definitely not under the circumstances I ever imagined, but I’m really grateful this community exists.
Earlier this month I was diagnosed with stage IV oral squamous cell carcinoma. The tumor is along the floor of my mouth and has reached the base of my tongue, and there are lymph nodes involved as well. Things moved fast after the biopsy. I’ve already met with the head & neck oncology team, and because of the advanced stage, the plan is pretty aggressive: a larger resection, an extensive neck dissection, and then radiation combined with chemo afterward. Hearing all of that laid out still doesn’t feel fully real like they’re talking about someone else.
I’m in my late 30s, otherwise healthy, so this hit me out of nowhere. Some moments I’m calm and focused, and the next minute the fear just sneaks up again. I’m especially worried about speech, swallowing, and how life will look after treatment. If anyone here has gone through stage IV oral cancer, or anything similar, I’d really appreciate any advice or just hearing your experience.
Outside of cancer life, I’m a graphic designer. I love photography, long coffee walks, and messing around with old guitars. I’m based in Munich, and honestly the only thing helping me stay grounded right now is getting outside for fresh air whenever my mind starts spinning.
I’m here to learn from people who’ve already walked this road. Thank you for having me, and I’m looking forward to getting to know some of you.

Hello Tobbiasbiass,

Sorry to hear about your recent sudden unexpected cancer diagnosis, and a more advanced stage at that. Glad to hear they are moving aggressively with it.

My experience has been very minor thus far so I can't give much from personal experience, but there are many stalwart veterans on here who have been down the path you are embarking on.

Nels is frequently on here these days and will be able to give you some tips and perspective.

I can echo some of the stuff I've heard them say to others newly joining; He'll probably tell you to eat now, and eat all the fatty stuff you can to pack on the pounds, and enjoy your splurging on your meals, as getting enough calories post treatment is going to be a challenge, and key to recovery. Folks often lose weight, even if they are already fit going in, keeping muscle mass and all that can be tough.

How soon are your surgeries and treatment scheduled?

Do you have a significant other or close friend who lives with or near you and can help out? If not some kind of social service visiting nurse system may help.

Your English strikes me as a native English speaker and you mention Munich so I am imagining you are likely non-Native German, why I ask about whatever social support network you may have to assist once discharged from the Hospital (and to keep you company while in).

I'm waiting on the pathology report for an armpit lymph node needle biopsy that showed up hot on a PET/CT, but it is likely reactive, or at least an unrelated disease to my oral squamous cell carcinoma of my tongue. Watch, I'll be one of those one off cases.

Anyway, keep getting outdoors and doing whatever you do to relieve stress and anxiety the best you can.

Here is hoping and praying things move well for your treatment and recovery.

Best wishes,

R/
CQ

Hello Tobias,

There is no sugar coating it, what youre about to go through wont be easy. I really dont want to add anything thatll scare you, but hang in there. The other member who replied to your post gave you great advice. Eat as much as you can! If youre a thin guy or normal BMI, id strongly suggest you start packing on the calories now. You will lose a lot of weight which in turn will make youre recovery more difficult. So try eatting a lot of good calories and try packing on lean muscle as well. The surgery will be rough, but radiation will be worse. So do everything you can to pack on the weight! During Radiation, try and stay active no matter how poorly you feel. If you need more advice, send me DM and ill try to give you as honest and more accurate reply. Good Look!

Hi Tobias,

Welcome to OCF and I am so sorry to hear about your recent diagnosis. I had similar stage 4 on my tongue out of nowhere five years ago. It is a long treatment and recovery process, many months or longer, and everybody responds differently and recovers differently. I can tell you there is hope. As you bounce around this site you will find many survivors that have been through this difficult path, and some of them 2 or 3 times. Yet, they find full lives out the other side. They inspire me.

As Chris and Mike advised, there is much to this process. And, it is often best to answer questions over time as it becomes overwhelming and hard to retain everything in one sitting. I will send you a private message with my cell number. Click on the envelop upper right of this screen to the left of your name and you should see private messages. Feel free to reach out to me via text or call.

A couple quick notes to reinforce what Chris and Mike said. Stay active, if just a one mile walk outside, so important to peace and recovery. Journal everything, whether written or video or audio notes. Journal your fears, your medical questions, your thoughts. I would wake up worried about whatever, jot it down, next thing, it would be 4 hours later and I found myself writing about my family, notes about growing up, things I wanted to make sure were shared with my loved ones no matter what. I would track my calories, weight, yoga, prayer sessions, you name it.

I am gonna cut myself off now and send the private note to you. Stay safe and keep the faith.

Nels