+ Reply
Log in or Register to participate in these discussions
Tongue Cancer
gof21
10 Posts
Hello,

In March 2022 I was diagnosed with squamous cell carcinoma. The tumour was on the bottom of the tip of my tongue.

I had to be persistent and do a lot of work on my own to make sure I got a biopsy done, CAT scan and meeting with a surgeon early.

The tumour on my tongue and lymph nodes in my neck have been removed. I’m in the process of recovering from the surgery which feels like it has been a long process.

My tongue was very swollen after the surgery which was very scary for me. I was very worried about not being able to breathe or swallow. It was very difficult to swallow. After 3 days of not being able to swallow I agreed to the feeding tube which it didn’t work out for me. Luckily the Speech Therapist at the hospital gently encouraged me to keep trying to swallow fluids each day and eventually I could. I was very relieved when the feeding tube was removed.

I’m waiting for the pathology results to come back for information on the next steps in my treatment.

It has been hard to stay positive during all of this, but having 2 daughters and an amazing husband that still need me has been a good motivation to keep pushing forward. I created a music playlist to listen to every morning to keep me strong. Let me know if you would like me to share the songs.




12 Replies
JenG
162 Posts

Hi @gof21,

That sounds like a scary experience for you! I’m sorry you had to go through that. And good on you for your persistence. It’s frustrating to me that we have to be such good advocates for ourselves or our loved ones

Welcome to the group that no one wants to be a part of. There is a ton of experience here and lots of good listeners. I was a caregiver for my mom who had lung cancer.

Yes, please do share your songs! I think everyone can use some new music in their rotation. :)

When is your next appointment?

Take good care,

Jen

ps if you want to ‘tag’ someone in a post, put the @ sign in and then start typing their screen name right after. Should turn blue once you’ve got it.

dayone
14 Posts

Hi @gof21

i am sorry to hear that you are experiencing these troubles. My cancer was at the back of the tongue so my treatment plan was totally different. But I did experience the swelling of the tongue and throat. Very scary experience.

I was given steroids to take on my chemo days and instructed to take the steroids if swallowing/breathing was too difficult During treatment. After treatment was actually where I had more difficulty with swallowing and breathing and I had a few times when I had to use the steroids. ( I had a plan worked out with my medical team what I would take and when I would head for medical care. My cancer medical team is 6 hours away). Talk to your medical team if there are any options that you can use too decrease the swelling. They do not like using steroids do to the side effects but I felt the side effects of fighting for air and not being able to eat so I could heal was worse than the side effects of short term steroid use.

keep up with the swallowing exercises that they have given you. They really do help. I am a year out from chemo and radiation treatment and 6 months out from surgery and I am still doing the exercises. Not as often but still trying to do them There have been times that I still ha difficulty swallowing, and having the techniques of the swallowing has saved me from chocking on food.

All the best in your journey.
Iris.

gof21
10 Posts

Hi Jen,

Thank-you for your message.

How is your mom doing?

Below is my playlist

Survivor - Destiny’s Child

Roar - Katy Perry

Try - Pink

Rise Up - Andra Day

Stronger - Kelly Clarkson

Carry On - Fun

Girl on Fire - Alicia Keys

Don’t Let Me Down - The Chainsmokers

Firework - Katy Perry

I hope you dance - Kati Durst

Up - Shania Twain

Brave - Sara Bareilles

Fighter - Christina Aguilera

It’s My Life - Bon Jovi

Shake It Out - Florence + the machine

You Gotta Be - Des’ree

Fight Song - Rachel Platten

Titanium - David Guetta

Rise - Katy Perry

As soon as my pathology report is in my next appointment will be scheduled.

Take care

gof21
10 Posts

Hi Iris,

Thank-you for your message and your recommendation to keep up with the swallowing exercises.

I’m also sorry to hear that you had difficulty swallowing and breathing.

How are you doing now?

My surgeon mentioned that I may need radiation and chemotherapy depending on the pathology results. I’m very claustrophobic so I’m nervous about the radiation therapy since I have read that your face is covered with mesh to hold your head still during the treatment. If you are comfortable sharing information, how did the radiation therapy go for you?

Take care

S2020
1193 Posts
gof21‍, thank you for sharing that fantastic playlist with JenG‍ and dayone‍. I am glad you have music to support you through all of this.

In addition to what JenG‍ and dayone‍ shared in their posts, I want to tag law1‍ who may have had similar experiences and treatments. law1‍, if you have information to share, thank you!

gof21‍, wishing you the best possible outcome with your treatments.
gof21
10 Posts

Thanks S2020

dayone
14 Posts

Hi @gof21

Good Morning. I am doing OK now, I am cancer free and starting to get my energy back. I was very surprised how long it has taken to actually start to feel better.

For the claustrophobia ;{ I didn't realize that I was claustrophobic till all of this. I am OK with the PET scans, but have troubles with the MRI's . For the radiation treatment the worst was making of the face shield. The treatments themselves are not pleasant because you do have the shield on but the best news is the treatmentment is very short. I believe mine was two minutes.

The really great news for us claustrobic people is that the medical team has medications that will help decrease the anxiety. ATIVAN. Talk with your medical team right away when you know that you will be needing radiation or any more testing and get a prescription and carry that with you for all treatments and testing. That way if you need it you have it on hand. Unfortunately the technicans do not have access to any Ativan if you don't already have prescription and have it with you.

For the treatments the things that helped me the most are:

  • mouth care, use the salt and baking soda rinses multiple times a day. Get an electric toothbrush and use it on the sensitive setting. If you are not doing this already I would suggest starting. The better condition your mouth and teeth are before you start the treatments the better.
  • At the first sign of a mouth sore, use the magic mouth wash. You don't want sores in your mouth and you don't want thrush.
  • Skin care - start moisturizing your face and neck twice a day (and cleansing) A friend of mine has a skin care line and gifted me a set of cleanser and two differnt types of moisturizer and I was doing this twice a day. (if you are not already doing this) (I only blistered on my last week of radiation, but each person is different with this, I started with the mositureizing about a 4 weeks before radiation started)
  • Swallowing excercizes do them this should be point #1
  • Talk with your medical team about what vaccinations you should have updated and if any should be updated before the start of treatment. SHINGLES - I wish I had done this while I was waiting for treatment, I am just recovering from a bout of shingles and it is not pleasant. You can still get shingles even with the vaccine but it is less severe with the vaccine.

I hope this helps. It is scary when you do not have information and you don't know what to ask of your medical team, but keep talking to them and let them know what is bothering you as they have seen it all and probably have things/knowledge of what could help you.

Iris

law1
731 Posts

Hello @gof21 , @S2020 , and @dayone ……. Thanks for tagging me regarding tongue cancer, treatments, exercises, fears, and relief once ALL recovery nightmares are over!!! Tongue blisters and thrush, anyone?!

I'm almost 4 yrs since diagnosis and killing the basal tongue cancer with 36 rounds of radiation. I agree with all of the horrid physical challenges before, during, and after this brutal journey of ours…. thankfully, I am not claustrophobic, so the mould I had to wear while being ‘pinned’ onto the board was more of an interesting macabre video for me!! Weird, yet true. I kept the mould and wear it at Halloween….(I think I am the only one entertained)

My mouth opened about 1 cm at the time, I refused to eat, chew, drink, yawn,……toooooooo painful….so I lost 40 lbs and went “Pain Insane” and was hospitalized with 10 bags of fluid to re-hydrate me. So many opioids I hallucinated and my hands shook all the time. Pain was never alleviated for about1 year. Wore a fentanyl patch, constipation ensued…..and I was depressed. Not unusual for us oral cancer folks. And, BTW….your lists of items of your experiences and thoughts….are stellar. Exercises from the speech-language pathologist continue to be advisable throughout our lives now. I did find the mouthwashes to be expensive and did nothing for my mouth pain…what did allow me to eat pureed foods eventually was gargling with Lidodan 2%. A red viscous liquid topical anesthetic. It lasts about 10 minutes which gave me time to discover ice cream, mashed potatoes, Boost, Ensure, and helped me immensely. It's available by request to a pharmacist at major pharmacies like London Drug.

I could blab on and on…..but I'll stop for now. Thank you all for your posts and remember that we are warriors!!!

gof21
10 Posts

Hi Iris,

I’m glad to hear that you are cancer free and getting your energy back. I wish you all the best for your full recovery.

Thanks for all the information you provided. This is very helpful since some of the things you mentioned I need to start doing now for preventative measure.

Kind regards,

TT

gof21
10 Posts

Hi law1,

I’m sorry to hear about the challenges you had.

Thanks for the information on Libodan.

I have done a lot of reading over the last few week, however, I have learned much more helpful information from the posts received over the last few days.

Best regards

TT

law1
731 Posts

Hi @gof21

I'm glad you are picking up nuggets of info from reading posts----Some additional helpful oncology-related websites I tried were from the US: Johns Hopkins University, the Mayo Clinic, and Sloan-Kettering Cancer Institute. This website (Cancer Connection), from the Canadian Cancer Society, is one of the most helpful for doing searches. BTW---the red liquid anesthetic gargle is Lidodan 2%, and although it is not cheap, it's worth the price.

gof21
10 Posts

Thanks @law1. I will check out the sites you mentioned.

Best regard,

TT

+ Reply