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Tongue Cancer diagnosis
Embur
3 Posts

Hello, This is my first post. My dad has just been diagnosed with tongue cancer and I'm feeling completely useless and scared. It's all happening so fast.

He had what we thought was an abscess in his jaw since late May. Multiple courses of antibiotics didn't do anything to help, and he developed sores all over his tongue. My mom thought it was an oral yeast infection from the anitbiotics and the Dr agreed. Gave him an anti-fungal mouth wash and was told it would start to clear up in 24 hours. It didn't. After 6 days of the mouthwash not working, and his symptoms getting worse (his tongue was swollen, he was only eating soft foods, and he was struggling with words), I convinced him to let me take him to the ER on the BC Stat (Aug 2), they did a CT scan of his neck and sent him home with a referral to an ENT and some Tylenol-3's for pain.

The ENT clinic called the following morning with an appointment for the next day. Without even waiting for results from a biopsy (which he took on Wednesday Aug 4) the Otolaryngologist diagnosed tongue cancer which had already spread to my dad's lymphnodes, and that he would need surgery, radiation, and chemo. He wasn't even given a stage, just told it was aggressive. My mom said the only question he asked the Dr, was what was his life expectancy? Dr told him on average its 5 years but for him its probably less.

This morning he had a full body PET scan done, I'm assuming to see how far it has spread.

I work in Rehabilitation in Long Term Care, so I know that there are going to be difficult discussions coming up about Advance Care directives. He doesn't have a living will or POA. I'd like to get it sorted out while he is still able to communicate without too much pain. But I have no idea how to approach the subject with both my parents.

I'm trying to be strong in front of him, but as soon as I leave my parents house to head home, I cry the whole time. I'm a mess, this afternoon I watched a movie with him (Jaws - neither of us had ever seen it), but after I left all I could think about was - is that the last time I'll watch a movie with my dad? - Is the last thing he'll ever say to me be ”Don't forget the shrimp". I know I have some time, and my rational brain keeps telling me that I need to treasure every minute. How do you stop the morbid thoughts and remain positive?

I don't think he knows the extent of what he's about to go through. He's always hated hospitals and doctors and I'm so scared that he's going to refuse treatment. I know that its his choice and I will respect his decisions as best I can, but right now the waiting is so terrifying to me. I can't even imagine what he's going through. Both of his parents passed from cancer when they were younger than he is now, so I know he's thinking of that. Also, my mom's sister passed from Leukemia at the beginning of May only 2 weeks after her diagnosis, so I know they are both thinking about her too.

We're not a family that has ever been big on talking through emotions or touchy-feely. But right now I really need a hug from my dad.

His next appointment is Aug 13 to get the results and I guess talk next steps. Sorry, its a long post but I needed to let it out somewhere and I'm glad I found this site. Thank you for listening.

12 Replies
Brighty
8442 Posts

I'm so sorry for what brings you here Embur‍ but glad you found such a safe and supportive community to help you. First I'd like to bring your attention to a few resources. Under 'forums'and 'cancer types 'and 'head and neck cancer ' there are several discussions. I'd like you to meet Lucy1245‍ and Lacey_Moderator‍ whose dad went through a similar diagnosis. We also have caregiver discussions under 'forums' where you can talk to caregivers. Cynthia Mac‍ took care of her father with lung cancer and will give you tips on how she managed and how she organizedand his meds and appointments and practiced self care. The discussion of a will and POA are also very important and I do recall @Trillium posting something about advanced care recently. @trillium .hope you see this!!! Take things one day at a time, one appointment at a time for now and do what you are doing.. loving and caring for your dad and spending quality time him. It's ok to cry...it let's all those emotions out and it's a release. It's tough having someone you love being diagnosed with cancer but you dont have to do it alone. The social worker in oncology is also a good resource, as well as the cancer information line. 1888 939 3333. Much help and support coming your way . We are here for you.

Brighty
8442 Posts
Trillium‍ hi...I couldnt tag you earlier but I saw you posted something on advanced care planning ..could you please share with our new member Embur‍ .thank you!!!
Cynthia Mac
3872 Posts

@Embur ,I’m glad you found this site, too. Don’t worry about the length of your post - it is clear you were writing from your heart, and that your heart needed to unload a few things.

For some reason, it’s natural for our minds to head directly to the “dark places.” My experience is that it takes work to remain positive, and that it’s hard to see them making one choice when you fervently wish for them to make another. Personally, I think it’s good that you’re able to be strong when you’re with your Dad and able to release after you’ve left them. Are you and your Mom close enough to be able to talk about both of your feelings through this? I take it she will be his primary caregiver, and your work in LTC has probably shown you how important it is for caregivers to practice self-care. Again, with your background in LTC, she couldn’t have hoped for a better support team!

You’re correct, the PET scan is usually done to see if or how far a cancer has spread. In my Dad’s case, they found a second spot, on the same lung that was really small — I think it was only about 2mm — so it’s an incredible technology. Don’t be surprised if they also order an MRI. Apparently a PET scan cannot read the brain - it shows up on a PET scan like the “snowy” static we used to get on our TVs, apparently.

You’ve already had one really difficult conversation with your Dad: you convinced him to go to the ER! So, you “have the chops” to have those difficult conversations. Again, you might want to begin by talking to your mom about it. You can also draw on information from your colleagues about ways to get that rolling. It is very, very important, though to get those mechanisms in place. Here’s why:

My parents were very open about end-of-life planning and I’m glad they were. One of my grandfathers died without a will, so they learned some very hard lessons when they were still in their early 20s, and they made sure that wasn’t going to happen to them or their kids. The day my mom died (suddenly, in her mid-70s), I was able to find her directions for care in less than 5 minutes. When we had to implement my Dad’s directions for care, it was a little different, because he was still in hospital, but we knew he wasn’t going to get better. While it was hard to turn those documents over to the doctor, I was able to do so with full knowledge that that was his wish, and that I wasn’t “guessing” about what his wishes were.

So, yes, you’re going to need to find a way to have some difficult conversations, but I hope you’ll find a way to balance that by watching more movies with your Dad, and maybe watching them with milkshakes instead of popcorn.

And you thought YOUR post was long!

S2020
1032 Posts

Embur‍, I am very sorry to read that your father has been diagnosed with cancer. It’s frightening and difficult.

Brighty‍ and @Cynthia Mac have included many helpful suggestions in their posts. I will add to that with links to various resources.

The Canadian Cancer Society’s Information Specialists are trained specialists who can answer questions and provide information about additional resources:

https://action.cancer.ca/en/living-with-cancer/how-we-can-help/talk-to-an-information-specialist

Online Wellspring programs are very helpful for patients, families and caregivers:

https://wellspring.ca/online-programs/programs/all-programs/

The link to the Advanced Care Planning that Trillium‍ posted has excellent information even for people not in Ontario.

https://ontariocaregiver.ca/advance-care-planning-for-caregivers/

Here’s one for B.C. A lot of it will be the same, but some of the information may be unique to B.C.

https://www.healthlinkbc.ca/health-topics/tu1573

We are here for you and your father.

Whitelilies
2272 Posts

@Embur Hello and welcome to our caring community….I am sorry to hear of your father's diagnosis…..yes, it must feel like a whirlwind…spinning…we all understand….

Long posts - perfect…..share it all with us.

Crying - Well……we “both” win that one….I own shares in Kleenex Brand!

Please meet: @law1 Thank you so much, if you share your experiences, here, to support our new member, on behalf of her father….much appreciated…..(also in BC)

We are here to support you, and your father….Lean On Us.

Regards

Whitelilies

Trillium
2008 Posts

Hello Embur‍ - It must be so hard for you with this all moving so fast. Sorry you and your family have to go through this. Thank you for the tag Brighty‍ and S2020‍ for those links. When you read through those links I think you will find some words that you will feel comfortable using to start conversations with your parents. My dad was not a feely touchy kind of man either but I would always just hug him when I was leaving him after a visit.

I’m going to tag law1‍ who went through a similar diagnosis and can share how she managed through this.

I have always found journaling to be my most helpful companion. I included a lot of art in mine with collage or just colours and doodles. This way I could write out all of my thoughts and the journal was the best listener. You can always toss the whole book in the garbage when your done.

I also found this course for caregivers (link below) really helpful with the guidance of the counsellors during the course who are excellent. These videos you can access anytime and you can pick and choose the ones you prefer. I would recommend watching them all. It is not for the professional caregiver you but for your dads caregiver you. They are two different kind of caregivers.
https://ontariocaregiver.ca/scale-program/

I would also use a breathing technique at times when I was feeling overwhelmed. Breath in to the count of 6. Breath out to the count of 9. As long as you are breathing out longer than you are breathing in.

Talk to us anytime you want to. I found it very helpful to talk about my journey with my son’s cancer here as it was happening.

Hugs for you.
Trillium



law1
697 Posts

Thank you @Embur for writing a wonderful and sad post…..those 2 descriptions are spot-on, as tongue cancer and one's family medical history can be daunting. Waiting for test results is often stressful, and can either open up communication with family, or shut it down fast! Sounds like you are taking an admirable step attempting to open communication; and, as a caregiver, you are bravely realistic in that your father is in control of his communicating and asking questions of the oncology team. Your crying is a natural and healthy occurrence, as is fear and feelings of hopelessness. Cancer accepts everyone in its brutal disease club. Sounds like you have taken steps to inquire about his current and future quality of life, sharing movies with your Dad, and keeping gentle tabs on his changing conditions. I know I am blabbing, but after @Trillium and @Whitelilies tagged me, I hopped onto the computer to briefly share my experiences.

I, too, had tongue cancer; tongue sores are SOOOOOOOOO painful, alter one's speech, impair adequate chewing, swallowing, yawning, breathing; it's dreadful and has countless other physical and psychological roadblocks. We do so much with our mouths… and the tongue is a very busy muscle! The 2 tubes (esophagus + larynx) in our throat are fascinatingly complex and vital to assist our eating and swallowing and breathing. I feel for your anguish. What a great site you have found here---- there is a wealth of information, support, humor, empathy…. and intelligent, kind contributors.

Since the diagnosis has been given to your Dad, the ENT doc, the scans, the medical appointments, the altered speech and difficult quality of eating easily are apparent, although he may not verbalize. I refused to swallow, eat, yawn, talk, and stopped my pain meds for10 days……BIG mistake. It was too painful as my throat and tongue were so swollen I could not manage to swallow pills. Some meds are available in liquid form…..and are easier to swallow, in spite of the pain. Without copious amounts of hydration, I was hospitalized and an IV was my method. Dehydration is dangerous and makes one go wacko. Oncologists and nurses don't mess around. Nutritionists and Speech Pathologists are often available for therapy…and most Cancer Centres have stellar counselors to help navigate the mental challenges.

To ease painful oral activity, a topical anesthetic gargle called Lidodan 2%, numbs the mouth and tongue for about 20 minutes….just enough time to drink Boost or Ensure for needed calories. It's available at larger pharmacies, you must request it by name. It's a red viscous liquid which does not require a prescription. It is a lifesaver!

On the yellow bar at the top of this page, are reference titles to help you navigate the waters. You may have already tried Forums, Cancer types (Head and Neck) and also Resources, to search for publications. A toll-free phone hotline is wonderful: 1-888-939-3333. It connects you with Cancer Centre professionals who are absolutely trained in cancer subjects, and will direct you to information and counselling sources. If you care to post again, please do so!!

Embur
3 Posts

Oh wow, thank you so much for all the information. 💗 I will read my way through it all. Probably a couple of times.
I've been trying to keep positive by reading the forums and I've watched some videos on YouTube to help me understand what he will be going through.

My mom is aware that I'm struggling to cope, she is in the same position. We haven't really talked much about our feelings, but have been keeping it more towards the technical side of what we've been reading about this type of cancer and what we've learned is going to happen. We both realize it is going to be a tough time. I'm not sure if my brother has a full understanding of the severity. He's been keeping himself really busy with hobbies. I plan on talking to him to see where he's at.

I'm making a list of questions to ask the ENT Surgeon when we meet him later this week. I've gone through some common questions to ask and there are a lot of great ones that I wouldn't think to ask.

I'll keep you updated.

Cynthia Mac
3872 Posts

@Embur , your last post sounded stronger already. I can well appreciate that you and your mom are “keeping it topical” right now out of necessity, but I hope you and she can get a chance to help each other through the emotional aspect as well. All things in good time, as they say.

Do come back and let us know how the family is doing, when you have a chance and if you wish to share.

Embur
3 Posts

What a whirlwind the past month has been, PET Scan, CT Scans, blood work, meetings with surgeons, C-19 tests. My dad had surgery on Wednesday, today (Saturday) we finally got to talk to one of the surgeons who was in the OR with him. The head surgeon told my mom he would call after, but he didn't.

They had to remove way more of my dads tongue than expected, about 80%, plus 2 teeth, shaved some jaw bone, and the lymph nodes in both sides of his neck. They rebuilt his tongue with muscle & tissues from his thigh.

Catheter was removed today, and they inserted a smaller trach tube, but he is still not breathing on his own yet. He is exhaling a little through the mouth, i could feel it on the back of my hand.

The Resident ENT we spoke to said that he may need to come home with the trach still in if the swelling doesn't go down. They've also requested a G-Tube insertion because he may not be able to swallow. At this point they can't say if he will ever be able to, it depends on if he gains movement in his tongue. Its possible he was giving us worst case scenarios, which I think gave my dad motivation to work to get better. He's not enthusiastic about being fed through a tube for the rest of his life.

Considering everything, he's in good spirits. He's being moved from the High Acuity Unit to ENT Surgery some time today. And after they had changed the trach to a smaller one, he was able to make some noises, partial words. Before that it was all lip reading.

Has anyone experienced at-home trach & stomach feeding tube? Do you need to suction the trach regularly? right now its happening about every 2 hours.

S2020
1032 Posts

@Embur, your father has been through a lot since his diagnosis and he is very fortunate to have you by his side as he goes through all this.

I am not familiar with at home trach and stomach feeding, but usually a nurse will show a patient and/or caregiver how to do this before the patient is discharged from hospital.

Another member, @Marilyn03, sounds as if she had a similar surgery. (@Marilyn03, if you are available, do you have information to share on this topic? Thank you!)

I see a discussion with a post from @Marilyn03 and other members at the following thread that may be helpful for you:

Wishing your father the best possible outcome as he heals and adjusts to all these changes. Be sure to take some time for yourself to recharge as you also adjust to all these changes in your life.

We are here for you and your father!

Marilyn03
9 Posts

Thank you, @S2020 for the introduction. I apologize for the late reply. @Embur how are you and your father doing now?
Each day brings new progress after the glossectomy surgery. I did have the same surgery. I was diagnosed with stage 4 squamous cell carcinoma , oral cancer in March 2021. They surgeons removed about 80% of the tongue. A lot of neck swelling. They took tissue from my forearm and inserted it as a replacement. Then a skin graft from my thigh to cover up the forearm.
my surgery was on April 20, 2021, 5 months ago. I did wake up to the trach in my throat. by the 6 th day the trach was removed but this was an arduous process. Took a lot of practice to learn how to breathe again. And yes suctioning of the throat was frequent. I too have a g-tube. since I lost the neck from my tongue as well, I cannot move it, therefore cannot chew. I am on a liquid diet plus feeding bag (g-tube). My nutritionist is working with me to gradually get off the tube and rely solely on a liquid diet. At the moment it’s shakes and ensure plus, with nutration shakes in a feeding bag twice a day through the g-tube. I do hope one day to be off it.

One note for the g-tube, you do need to keep the area clean as it is very easy to stomach infection. This requires a 2 day hospitalization.
The nurse, you or your father can put a sticky type of sponge caked mediplex safetac on the area, under the rubber circle to protect the skin and piec prevent infection. There will be some ‘juices’ that come out from the wound that need to be cleaned daily.

The swelling in my neck is still there though greatly decreased. i was told it won’t fully go away until 6 months to a year. Since people 2 years. I finished radiation treatment and have recovered from this too. It was a long journey and I’m at the end of it now. I have a follow up CT scan in mid-October and an hoping and praying for it to come back clear. I would be happy to help you with suggestions for the step your father is in at the moment. I can only imagine hope you feel. My husband went through an emotional roller coaster, he relied on his mother for support and me. It’s still tough to this day, but you get through it.

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