Stage 1 Tongue cancer: What are the chances of recurrence?

I am one week post surgery for squamous cell tongue cancer in Illinois. I have no idea what to expect. Will my tongue be numb and I talk with a slur for the rest of my life? Will my tongue feel burned forever? I return to the doctor next week for my post-op visit. I am guessing he will be able to answer a lot of questions. I am just curious what other's experiences were in the beginning.

Hi @crogers and welcome to our head and neck group. Everyone's experience is unique. Our body is amazing in it's ability to work around damage. For example, I have no feeling in my lower left lip yet have been able to figure out how to play the bugle again. I worked on my speech issues for months and basically learned to speak slower, thus clearer.
Give yourself time to heal. I take it you have no followup Radiation or Chemo, which should aid in faster recovery.
I also live in the flatlands although so close to Wisconsin that I can smell the cheese.

Hi @crogers,
What type of surgery did you have with your tongue cancer? I had left partial glossectomy with a left radical forearm free flap on April 3rd of this year with a modified neck dissection.

I live right above you in Wisconsin.

I to have just been diagnosed with tongue cancer. Live in Canada. Was told that the amount of tongue surgically removed will be the size of a toonie. A toonie is 28 mm in diameter and 1.75 mm thick. I am scared to. Will I be able to talk, and swallow, with this amount taken off right side of tongue? Middle of tongue starting at bottom, and goes to top of tongue. Will also have lymph nodes removed if needed.

I’m wishing you the best island girl. I can’t comment to your question as I was stage IV and didn’t undergo surgery.
Stay positive and keep a survivor attitude!
Jody

Hi @islandgirl63 I understand "scared" as most of us here on Connect have similar experiences with cancer and the surgeries involved. As I understand for the tongue, the tissue is often replaced from elsewhere on your body such as the forearm. All of this of course will lead to many changes in your normal life and routine. However, this is not a unique surgery so there is plenty of help out there. You need only to ask. I encourage you to start your own discussion here on Connect, which can be as simple as a question such as "How do I deal with this recovery from cancer of the tongue"?
Sir Winston often said "Courage." I second that sentiment. Worry won't change a thing. Tough times never last but tough people do. All good phrases to remember.
When are you scheduled for a this surgery?

Hi @islandgirl63,
I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection taking out some lymph nodes. This one was not caused by HPV and was most likely from too much radiation from my first cancer which was on my left tonsil (2008) as it is literally adjacent to it.

As others have said here is get a second opinion and make sure it is from a cancer clinic. In addition, I would choose the nose feeding tube which is temporary 10-14 days and get a swallowing/speech therapist now. You will also have to be very aware of the higher chances of getting aspiration pneumonia and lymphedema after the surgery.

Best of luck on your journey.

My throat cancer, aka base of the tongue cancer, was biopsied as a "basaloid squamous cell carcinoma".
From which I assume, these cancers are the same as, or akin to, skin cancers which are described with similar language. (I am a patient, and have no medical training).
My stage 4 throat cancer was treated with radiation and 3 large doses of cisplatin chemo....well, 2 1/2 doses,
as halfway through the third infusion my body reacted so they decided to call it a day with 2 1/2 big doses.
(I don't know what the dose was, I only know that my oncologist, trained at Harvard and Memorial Sloan Kettering, told me, "we gave you a BIG dose".)
Subsequently I read that skin cancer patients in Australia (where there is a lot of skin cancer, as you have a sunny climate, a porous ozone layer, and a fair-skinned, blue-eyed population largely from cloudy northwestern Europe)
experienced a >20% reduction in cancer recurrence if they took 500 mg of niacinamide (aka nicotinamide), a form of vitamin B3, twice a day. I've been doing that faithfully during the seven years since my disease, and I've had no issues. Happily, this supplement is widely available and very inexpensive. Here is the study:

"The prevention of common skin cancers and precancers is possible by taking an inexpensive, widely
available, oral pill twice daily. The pill—the vitamin B3 supplement called nicotinamide—cut the rate of new
squamous-cell and basal-cell skin cancers by 23% compared with placebo after 1 year among patients at high risk for skin cancer. Nicotinamide also reduced the risk for developing actinic keratosis, a common precancer of the skin.
The results of the phase 3 ONTRAC skin cancer prevention study were presented at ASCO 2015.
These findings have the potential to lower healthcare costs. In the United States, skin cancer accounts for approximately $4.8 million annually.
The investigators emphasized that these results were achieved in individuals who previously had skin cancer and were thus at high risk for new skin cancers. The results do not apply to other patient populations.
In addition, the investigators emphasized that nicotinamide is the form of vitamin B3 that should be taken for
prevention—not other forms of vitamin B, such as niacin—and that continuous treatment is advised.“This form of prevention is safe and inexpensive, costing around $10 per month, and it is widely available. It is ready to go straight to the clinic for high-risk patients with a track record of skin cancer. This is a new opportunity for skin cancer prevention,” said lead investigator Diona Damian, MBBS, PhD, Professor of Dermatology, Dermatology University of Sydney, New South Wales, Australia. “The pill does not take the place of sunscreen use and regular skin checkups by dermatologists for people at high risk,” Dr Damian noted.
As the aging population continues to grow, basal- and squamous-cell carcinomas will become even more common than they currently are. The investigators are from Australia, which has extremely high rates of sun- induced skin cancers. A previous phase 2 study by this group showed that nicotinamide reduced the number of new actinic keratoses in Australian patients with sun-damaged skin.The present study included 386 patients aged 30 to 91 years who had ≥2 nonmelanoma skin cancers over the past 5 years, and were therefore deemed high-risk. The patients were randomized to oral nicotinamide 500 mg twice daily or to placebo for 12 months. Dr Damian said that the patient mix reflected those seen in a typical skin cancer clinic. The average age was 66 years, and 66% of the patients were men, many with ongoing chronic comorbidities.
“These patients were typical of the ‘warts-and-all’ type of patients we see in the clinic,” Dr Damian said.
The patients were checked by a dermatologist every 3 months and suspicious lesions were biopsied. Nicotinamide reduced the rates of new basal-cell cancer and squamous-cell cancer diagnoses by 23% compared with placebo (P = .02). Nicotinamide reduced the rates of actinic keratoses (precancers) by 11% at 3 months and by approximately 15% after 12 months of treatment compared with placebo.
“This preventive treatment has no side effects. Unlike niacin, another form of vitamin B3, nicotinamide does not cause headache or increased blood pressure,” Dr Damian said.
This “is welcome news. With this study, we have a remarkably simple and inexpensive way to help people avoid repeat diagnoses of some of the most common skin cancers. With just a [twice-]daily vitamin pill, along with sun protection and regular skin cancer screenings, people at high risk for these types of skin cancers have a good preventive plan to follow,” said ASCO President Peter Paul Yu, MD, Director of Cancer Research, Palo Alto Medical Foundation, CA.'

Second opinions can be helpful.

@robertpeters, I agree. A study examining the clinical value of second opinions in cancer care found that they often led to changes or reductions in treatment that reduced short- and long-term health risks for patients. Another study found that 94% of patients found a second opinion helpful, with satisfaction related to improved communication and reassurance about their diagnosis.

People can read more here:
- Tips for seeking a second opinion https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/

@robertpeters, did you get a second opinion? Have you had a diagnosis of cancer?