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Joined: Oct 2022
Posts: 3
LAURAC Offline OP
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Joined: Oct 2022
Posts: 3
I’m meeting with Oral Surg. and Pre-Anes. (whatever that means) today who I think will be the one doing a possible Reconstructive Surg. and to discuss result from head/neck CT scan, to discuss what “The Plan” will be moving forward now. Any suggestions what are important questions to ask- I’m going alone (have no one to accompany me to this appt.- wish I had someone that’s gone through this already or at least in the medical field) and feel like it’s just going to be so overwhelming and I’m just going to shut down, forget what to ask, etc. The appts. already seem rushed and it’s so important that I ask the right questions and make the right decisions at this juncture moving forward, so I need to streamline this as much as possible at this appt.moving forward.


Started off with tongue lesion 4 months ago, got it biopsied a few months later (don’t know how I got this- I’m pretty healthy, non-smoker, rare drinker). Newly diagnosed squamous cell carcinoma- lateral back of tongue on one side. Had CT scan. Meeting with oral surgeon in a few days to hear results and go over the plan. Wish I had someone to go with me to help me take it all in!
Joined: Aug 2020
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Joined: Aug 2020
Posts: 116
Likes: 20
LauraC,

I am so sorry you are going through this. Cancer is scary and overwhelming at times.

I went through stage 4 SCC surgery and treatment two+ years ago. Lost right half of my tongue, Doc rebuilt it with flesh and artery from my left forearm, trach tube for breathing, nasal tube for feeding, took all my nodes on the associated side of my neck. Received radiation to mouth and neck, no chemo as they found cancer inside only one node.

The best advice i got was to keep a journal. Take it with you to the appointments. Write all the important things down. Questions would pop into my mind at all hours. I had my journal there next to me nearly all the time. I would write it down no matter how silly it sounded. Before every appointment, esp. daily rounds when i was in the hospital, etc. I would list all my questions since the last dr visit. Speaking was hard after surgery, so sometimes i would just show them my list of questions.

Many other things that can help - what to eat, recipes for Vitamix, how to best tolerate treatment (simple answer - keep your weight up), what to bring to hospital, etc. But, most of these will be easier to answer once you know the plan.

One other thing. You are in charge. The doctors typically present this very frank and definite treatment plan. You have every right to question it and decide what you want to know and what you want to do. This is your body, your life, and you should never feel like you can't ask anything at anytime. So, if you forget, and think of something later, get emails and contacts of the nurses and case helpers so you can reach out later.

A short quick read i recommend. Google "cancer is like finding a lion in the fridge." It made me laugh and cry and i have reread it many times.

Reach back out after your meeting and people here will help.

Keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Joined: Jun 2019
Posts: 244
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"OCF across the pond"
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"OCF across the pond"
Gold Member (200+ posts)

Joined: Jun 2019
Posts: 244
Likes: 2
Hey Laura,

How are you doing?


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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