Diagnosed with Buccal Mucosa Cancer in March 2022. Surgery scheduled in 24 days. Overwhelmed with the extent of surgery and recovery ahead, so trying to learn from those who have been through this before me, and hopefully I can help others in the future.
More details: 47-year-old woman, no known risk factors but surprise - what I thought was a sore from biting my cheek at night turned out to be cancer. Biopsy, MRI, PET all done. Lymph nodes MAY be involved, so some of those are going away, too. It's far back in my cheek so going to be major reconstructive surgery in there with a plastic surgeon involved for a skin flap reconstruction inside my cheek. Never been hospitalized before, so I'm new to ALL of this.
What else should I share?
Thanks!
Dear SD158
First, I am so sorry to hear this. Second, you have come to the right place. As you surely looked around the website and forum you can tell OCF has lots of people to help you. I did not have exactly the same situation as you. I was diagnosed with stage IV squamous cell cancer on my tongue in March of 2020. I too was not a smoker and only social drinker. They took half my tongue, all my lymph nodes on that side, gave me a trache tube to breath, and a nasal tube for feeding. About 8 weeks after surgery, I received 30 days of radiation (total of 60 Gray units) to tongue and neck area.
Some notes - surgery was intense but recovery improved nearly daily. Radiation was a slow burn and recovery was judged in weeks and months. I am still recovering some taste and saliva. My point is be patient with yourself. Keep a journal starting now. It will help you cope, manage your own care, and be ready for all your critical doctor appointments. I wonder if you will need a feeding tube with cancer in the cheek. I was advised to gain weight in preparation for surgery and radiation. I am 5'11" male and 160 lbs. I lost 10+ lbs in recover from surgery and again almost 15 lbs from radiation. I gained back 7-8 lbs in between. A vitamix was quite helpful to getting lots of easy to swallow calories. I would dump avocados into almost every mix. A good book i recommend is Anticancer. And, if you havent already read the analogy of finding out you have cancer is like finding a lion in the fridge, google it. It is worth the quick read. Also, find ways to exercise, feed your spirit (prayer, yoga, etc) daily. Big giant hugs are awesome therapy.
Please keep us all up to date. Sending you prayers for successful surgery and smooth recovery.
Nels
thanks! I was advised to gain weight prior to surgery so I’m working on that
. Otherwise, I was told to expect a feeding tube, but probably not trache. I’ll check out that book and the lion fridge analogy. I hadn’t heard of wither one.
Glad to hear you’re on the mend.
5 weeks post-surgery. Wow, that was intense. Still some swelling from flap reconstruction inside cheek and I can't open my mouth wide, so still soft foods. Arm (flap donation site) still healing, but keeping it wrapped and it isn't a big deal, I know it will be back to full use sometime in the next several months. Good news - all lymph nodes that were removed and margins are clear so no additional treatment for now. Just healing from surgery and the typical wait and watch for many years. All in all, I'm happy with outcome, but surgery was a much bigger deal than I thought.
Congratulations on a successful journey if a difficult one. This will hopefully be something you are done dealing with, after your healing is complete. Are you eating by mouth now? If so, how difficult is it to keep everything clean with limited opening?
brushing is a challenge - the side that wasn't touched is surgery is easy, but the surgical site side is harder. Gentle brushing where I can reach and lots of good mouthwash. Yesterday my surgeon started me on stretching my jaw - by putting multiple tongue depressors in between my teeth and then increasing them as I gain mobility over the coming weeks. I was only on a feeding tube for 9 days post-surgery, then liquids, now soft foods until I can open enough to get more food in and swelling is down enough to chew harder without worrying about biting the reconstruction. All self-directed as I feel comfortable. Really can't complain about the experience, it could have been much worse.
Dear SD158
So pleased to hear of your successful surgery and that recovery is on track. This cancer thing is a wild ride but there can be wonderful realizations along the way too. I believe I now have a different feel and take on life. Most around me probably wouldn't notice as i have always been an optimist but I do daily.
Keep us updated. Stay safe and keep the faith.
Nels