topic Re: Tongue cancer in I've just been diagnosed

Tongue cancer

Salival — Mon, 14 Mar 2022 09:32:01 GMT

Hi everybody.

So about me, I’m a 43 year old male and about a year ago I noticed that I had an increased tendency to bite my tongue when speaking. I know it happens from time to time but this was occurring three, maybe four times a week.
So I checked my tongue and noticed a white patch. Naturally google informed me that leukoplakia was a possibility so it came as no surprise when my GP duly diagnosed it.
I was referred to an oral surgeon and had a biopsy which turned out negative however we’d still monitor it.
February this year and the specialist noted a lump, which I knew was there because I still bite it from time to time but as I had a previous negative test then I wasn’t too concerned. Referred for CT, PET & MRI which returned a ‘possible early stage carcinoma’. Again not too worried, but the following biopsy confirmed it was in fact a tumour. It’s only a T1N0M0 and I’m okay with that (as far as diagnoses go) however what threw me was the magnitude of the surgery: tracheostomy, removal, neck flap surgery to remove the lymph nodes and further surgery on my forearm to steal some artery to resupply blood flow to the face.

I was only diagnosed Friday 11/03 and you know, I’m okay with everything now. The hardest part now is the uncertainty about when surgery will take place and the fact that my two boys (age 4 & 5) will have to see me in such a state in hospital.

I know things could have been much worse and I am thankful that I noticed a change and acted on it rather than letting it slide like I tend to do with most other health concerns.

Pretty much just sharing my story and to say don’t ignore something about your body that isn’t quite right as you never know what the outcome may be!

Apologies for the novel!

Cheers.

Re: Tongue cancer

sch — Mon, 14 Mar 2022 13:45:56 GMT

Hi,

Good on you for getting it checked out and finding this relatively early.

I'm very sorry to hear about your diagnosis, but thank you for sharing your story.

Children bounce back.

Personally, I found that telling them the truth was the easiest way. Not filling in all the gory details, but just be honest with them about what is going on.

How long is your treatment going to take?

-s

Re: Tongue cancer

Salival — Mon, 14 Mar 2022 19:14:34 GMT

Thanks sch.

Well I’m relatively lucky in that surgical removal ‘should’ be all that is required.
I haven’t had my appointment with the surgeon who will carry out the operation as of yet, however my Dr has told me that I’ll be in hospital for 2 weeks but what happens from there I’m still unsure of.

I have spoken with my kids, to tell them that Daddy needs to go to hospital soon, and right away my eldest asked ‘is that because of your tongue?’ so he is at least aware that something is going on. As you’ve said, I haven’t gone into the gory details however I think he has heard enough to know the seriousness of the situation. My youngest son is just mad, in a crazy way - when I said I’d be in hospital for 2 weeks, he just said, ‘2 weeks, that’s not very long at all’!
I know they’ll be okay as my wife was hospitalised last year for 7 nights so they know what to expect.

Guess we’ll just wait and see now!

- S

Re: Tongue cancer

Salival — Thu, 31 Mar 2022 02:10:01 GMT

An update - surgery was scheduled for May 2nd however I discovered that my private cover is inadequate for this type of surgery so I have a couple of options: front up the cash (12k + anaesthetist) or wait on availability in the public system with the same surgeon whom I met last week.

Spoke with my GP also who said that it is not an aggressive tumor and won't grow overnight so I'd be happy to wait 2-3 months, maybe a little more but I think if it exceeds 5-6 months then I might just have to pay and be done with it.

Health provider did say I could upgrade and have their doctor's evaluate the 'pre-existing' condition exemption (meaning a 2-month waiting period rather than 12 months) but I feel that because I was first alerted to this almost a year ago, despite it only being confirmed cancerous a few weeks ago that they'd reject it so I'm not really even considering that right now.

So feeling a little less optimistic right now but we'll see what the surgeon says and just go from there...

Re: Tongue cancer

OzStu — Fri, 15 Apr 2022 11:47:37 GMT

pay the money and get it done asap. The longer it's there, the more chance it will spread.

Re: Tongue cancer

Salival — Sat, 16 Apr 2022 09:55:01 GMT

So things escalated.

7:30 Monday morning April 11 I received a call asking had I eaten? Luckily for me I WFH and tend to eat mid mornings.
Well a whirlwind of emotions and fears ensued and within 2.5 hours I was on the operating table prepping for partial glossectomy, radial free flap, neck dissection and everything else this op entails.

Operation was a success and I was out of ICU and on the wards on Tuesday. Pathology came back saying no cancer in lymph nodes or surrounding tissue but depth of incision was 6mm… First few days found it hard-mentally. Then Thursday just gone I started walking around the hospital, and have repeated this numerous times a day since then.

Friday afternoon started to talk / verbalise whatever you want to call it with upper cuff trache inserted and have shocked doctors at my progress.

Hardest part though is the lack of sleep and loneliness I feel at night. I haven’t seen my two beautiful boys (5 & 4) yet as it is too confronting for them just now.

I just wanted to thank this community for giving me a voice when I needed an independent vent

Much love xox

Re: Tongue cancer

LindaG — Sun, 17 Apr 2022 02:19:04 GMT

Hi Salival, Wow that’s great news really! At least you didn’t have a long time to dread the op and no cancer spread!! So happy for you💕. Hopefully it’s not too long until you can see your boys again😘. LindaG

Re: Tongue cancer

Salival — Tue, 03 May 2022 10:32:28 GMT

Thanks Linda.

After 9 days in hospital I was discharged so that I could spend my birthday with my family. It truly was the greatest gift of all!

I’ve since been informed that I need to undergo radiation treatment as the depth of the tumour was 6mm and typically radiation is recommended wherever the depth exceeds 5mm.

I’m at 3 weeks & 1 day since surgery and am feeling good - I can eat most things now however some solids can be tricky (bread and other foods which tend to get stuck in the roof of the mouth).

I’ve lost around 5kg since surgery which probably isn’t desirable leading up to radiation however I’m still at 90kg so there is still plenty of me and I’ve never eaten so much in my life - only difference now though is fewer carbs and healthier eating all round.

I don’t know all the details of the radiation yet which is kinda daunting and I’m guessing that this stage will be tougher than the surgery.

Has anyone here been treated with radiation on the tongue? What can I expect and do you have any advice / tips for me to follow?

Many thanks.

Re: Tongue cancer

Budgie — Fri, 06 May 2022 09:37:03 GMT

Hi @Salival ,

I've read thru your posts & I'm glad you've come thru your surgery well. Captain Australia started a post on this sight talking about the side effects of head & neck cancer treatments.

If you go to the 'Treatments & side effects' thread, I've floated the conversation at the top for you. There are a lot of people giving their experiences on that thread, so I hope it will give you an insight.

Good luck with everything.

Budgie

Re: Tongue cancer

Salival — Thu, 12 May 2022 09:34:04 GMT

Thanks Budgie.

I appreciate both your response and linking me to a similar experience.

I guess every situation is different however it is still valuable information for me to digest prior to the start of my treatment.

Many thanks 🙏🏼

Re: Tongue cancer

Eldestdaughter — Thu, 12 May 2022 10:32:48 GMT

Wishing you well with all of your upcoming surgeries and or treatments. Your Boys maybe your best medicine as you recover.

Re: Tongue cancer

Salival — Thu, 12 May 2022 10:45:36 GMT

Thank you. Yours, and everybody else’s well wishes mean a lot me.
I never could have imagined going through this however the support I’ve received from family, friends, my employer and people such as yourself certainly warm my heart and makes me believe that in time, everything will work out!

Re: Tongue cancer

Salival — Wed, 08 Jun 2022 11:53:47 GMT

A brief update - commenced radiation this past Monday (week 9 post surgery) and it’s too soon to tell the negative effects.

I’m feeling well and am looking to return to work. If it weren’t for the radiation I’d be back at work already.

Maybe I’m a little ambitious but we’ll just see how things pan out.

Stay tuned to see how the next 27 sessions go for me…

Re: Tongue cancer

LindaG — Thu, 09 Jun 2022 08:37:36 GMT

Hi Salival, my friend has just got through radiation treatment for tongue cancer. It was hard, it was long but the cancer is gone so he says it was worth it! Be strong and courageous and you’ll make it through. Love and prayers to you 🙏💕 Linda G

Re: Tongue cancer

Salival — Mon, 20 Jun 2022 12:36:04 GMT

Thanks Linda.

Turns out this is all a lot harder than I had myself believe.

I’m into my 3rd week of radiation and if you had of spoken to me last week, I’d have told you it was all good and there were no side effects.

On Friday evening though, I started to notice some pain and a lot of discomfort from the ulcers on my tongue and inner cheek. This all happened within a matter of hours after my 10th treatment.

I still have quite a ways to go so I’m expecting things to get pretty rough, if the way I’m feeling now is anything to go by.

But, as your friend said, it’s worth it in the long run. May I ask how long ago his treatment was, and if he had any recurrence at all?

Thanks for putting up with my ramblings everyone 👍

Til next time…

Re: Tongue cancer

LindaG — Mon, 20 Jun 2022 13:38:28 GMT

Hi Salival, my friend had 35 radiation treatments then a PET scan a few weeks later. Also had chemo every second week. He just had his scan about 5 weeks ago which showed no more lump. So it’s all very recent. Just keep going friend! I can’t believe this time last year I had just finished chemo, had lost all my hair and felt so unwell. Now I’m walking 5km 3 times a week and my hair has grown back beautifully!! It’s so hard but the outcome will hopefully be very good for you 🙏💕. Linda G

Re: Tongue cancer

djs — Thu, 30 Jun 2022 08:56:27 GMT

Hi, I was interested in reading you comments as I'm just 2 weeks after having the base of my tongue removed and my right Tonsil. Just starting to eat really soft meat with vegetables, but small bit's at a time, retraining the tongue to close the wind pipe after the pain is under control is frustrating, I'm glad you are getting there.

David.

Re: Tongue cancer

ericnnaji — Sun, 03 Jul 2022 09:33:46 GMT

Hi,

Thank God you acted fast, because one of the control measures for this ailment is what you have just taken by yourself (acting fast).

Wishing you a quick recovery.

Re: Tongue cancer

Salival — Sun, 03 Jul 2022 12:42:15 GMT

Thanks Eric.

I think I speak for a lot of us when we note a (potential) issue with our bodies that it is far too easy to write it off as a passing ailment which will likely correct itself.

I am so thankful that I realised that this was out of the ordinary and that it warranted further investigation.

Having dealt with it for the past year then I have obviously been asking myself questions such as “was it there when I had the first biopsy?” and “would scans have showed a tumour way back then?”.

Of course these questions all fall into the ‘what if’ categories which have caused me the most anguish. I don’t think things would have changed any but naturally it’s still a concern.

Moving on, I haven’t updated in a few weeks so I am now 2/3 done with radiation. The end of week 2 saw the start of my side effects which became full blown in week 3. The worst being an ulcer on my tongue (opposite side to treatment) which measured some 40mm x 10mm and caused me so much pain and discomfort - any acids within foods hurt incredibly and everything I did affected it.

I was prescribed fentanyl patches along with the oxycodone and not even that provided relief.

Over the course of 10 days, despite my best efforts to eat or drink meal replacement shakes I lost about 5 kg.

I seem to be past that now in that I can eat again however I definitely note the change in taste and so on.

I haven’t got the dry mouth issue, in fact I’m dribbling more than ever in my sleep and the saliva is quite thick and difficult to expel.

I’ve returned to work (albeit 3 days per spread across the 5 days) and it’s been good to focus on something other than all this. Fatigue hasn’t been too much of an issue and I’m feeling well again.

Not long to go now and I can focus on getting on with things and try to ignore the fact that this isn’t really over but is at least the end of treatment for what I hope is the hardest phase.

Thanks to all who have followed my story and who have taken the time to respond and to offer me encouragement and so forth.

I’ll be back in a couple of weeks to celebrate the end of my treatment and hopefully it’s all uphill from there!

Kind regards,

Re: Tongue cancer

Salival — Thu, 22 Sep 2022 12:19:26 GMT

It’s been some time since I last posted, so here goes.

Completed radiation mid-July and it was horrible.

I made it to say 28 before I was admitted to hospital as I could neither eat nor drink so was dehydrated and essentially felt broken.

Two nights in hospital and I started eating and feeling relatively well, until two days later…

From that point on I did not eat for 3 weeks; I tried to drink the hospital supplied drinks but I could barely manage 3 bottles (1200 calories daily) and as a result I was losing 2.5kg each week.

Some 2 months later, I’m feeling okay; I still have pain in my jaw, my appetite is low, although I do try to eat 3 meals daily, but I am definitely eating way smaller portions and the dry mouth has definitely hit hard. I’m drinking close to 1L of water through the night as I wake and my tongue feels like sandpaper.

With regards to weight loss, I was expected to lose 5% of my body weight, so 4.5kg thereabouts, but I’ve dropped closer to 23kg, which has been concerning for everybody else bar me.

I appreciate all the responses offered to me through this forum, and it has been helpful to hear from others with similar experiences.

Thank you.