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#201408 06-21-2022 07:05 AM
Joined: Jun 2022
Posts: 2
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Joined: Jun 2022
Posts: 2
Hello everyone! I am newly diagnosed with squamous cell carcinoma. I'm 46 and female, and in the 10% of cases that there's no real reason for why I have this cancer.

I had a bump on the side of my tongue that nearly eight months ago, my dentist said he could remove with a laser, thinking that I had traumatized it by biting my tongue. I returned to the dentist six months later for my next cleaning and the bump was so big that I continually accidentally bit it. When I asked him to remove it then, he told me the bump was too big. Two weeks later, I had the bump removed by an oral surgeon who was 95% confident it wasn't cancerous but they still sent it in for biopsy. A week later, I got the news it was cancer.

I found this website and forum by looking up tube feedings because I have celiac disease and diabetes and have been told that I'll need a feeding tube through my nose for 1-2 weeks post surgery.

My MRI miraculously showed NO CANCER a couple of weeks ago, meaning that the first oral surgeon removed most of the cancer and my body has possibly healed itself in two months time. But because he didn't get clean margins (he didn't know he was removing cancer), I am still set for surgery Monday.

My treatment plan is a partial glossectomy with alloderm and radical neck dissection, a six-hour surgery, an overnight ICU stay with breathing tube, next day be moved to a normal room and I'm supposed to stay in the hospital 3-5 days. I'll have a feeding tube for 1-2 weeks, two drains placed in my neck, and then pathology should be back a week later. I was told then liquid diet and eventually soft foods. I was also told that I'd have exercises to be able to speak clearly (I teach) and if those didn't work, then I would be referred to a speech pathologist this summer.

I know the surgeon expects to get a 1 cm clean margin from the site of my bump (they literally can't see where the cancer was). The recovery seems brutal and I'm overwhelmed by it. Of course this week, I'm over-thinking everything. What suggestions do you have for me? Any tips, tricks?


Melissa
Joined: Aug 2020
Posts: 85
Likes: 11
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Joined: Aug 2020
Posts: 85
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Melissa,

I am so sorry you are going through this but glad you found this community. Cancer is overwhelming and scary in so many different ways. I went thru a similar process about 2 years ago - they removed half my tongue, rebuilt it with skin from my forearm, took all nodes on my right side neck, nasal feeding tube, trach tube for breathing, radiation treatment.

Some thoughts and suggestions. For the hospital, I brought an electronic writing pad (I bought a boogie board, but there are many brand options, think they are around $25 on Amazon). This was especially helpful the first couple weeks as I learned how to speak again. I kept a small picture of my loved ones on the table. This inspired me, helped break the ice with nurses, forced me to smile and communicate because it was my favorite topic - my fam! It may have even helped the doctors (many of which are uber overworked) get to know me more. I also brought my phone and an ipad for music and movies so i could charge one while using other. Bring paper notepads for personal and medical journals. I suggest you track all medical notes, questions, etc. Not to get too gross, but for example, i would write down when i went to the bathroom, how much, what color, etc. They want to know everything. The personal journal was probably the best idea/most therapeutic item. I would note fears, funny experiences, memories, whatever came to mind. This will help you reference your progress. I like to be active but due to Covid I was tightly restricted to my room. So, I would hold dance parties by myself and watch my heart-rate on the monitor making sure not to go too far.

At home, I had a hospital bed rented with side table similar to my room set-up in the hospital. I basically took over the family room for a couple weeks. I gave myself goals to reach every day in 4-5 categories. It included forcing myself to face-time with friends and family (helped improve my speech and mood, gave me something to look forward to), to exercise, to eat food, to meditate, to practice my faith, to do medical treatments (changing bandages, pills, etc). I would score myself and have a treat for a high score - favorite movie, eventually when i could eat again, favorite ice cream, etc. I cut t-shirts low around my neck to make it easier to deal with the hole in my neck.

I remember being quite self-conscious about my speech and lisp early on after surgery. But, after a few months, I jumped on a business call with a customer and it went much better than I expected. They understood nearly everything I said. I did have to repeat a few things but I found people to be quite patient with me including strangers.

A few other notes. I learned to judge my progress after surgery in days and weeks. Your tongue will be quite swollen and I had to learn how to deal with the trach tube (clear it, etc). It was over a week before I could touch my teeth together. But, everyone is different so please don't assume you will have the same issues. I learned to judge my progress at home after radiation in weeks and months. It takes a long time so be patient with yourself. A couple of my favorite reads - Anticancer (content rich book, powerful on ways to live to lower your cancer risk) and google "getting cancer is like finding a lion in the fridge." Lion in the fridge is short but powerful nonetheless. Slowly, I just kept adding things to my life. Walks turned into short jogs which became longer, then surfing again. Food, glorious food. I was sooo excited to get rid of the nasal tube and eat again but i had to slowly add simple stuff. Get a vitamix or similar. That was a great way to jam calories into my body.

You can do this. Please send us updates. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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