Hi all,

My wife, Lillian, has been diagnosed with cancer of the tongue (Stage1) with the lesion tucked away under the tongue on the right hand side where the tongue meets the floor of the mouth

Lillian had been complaining of pain in her mouth since mid-July of this year she went to her gp in August who suggested to go to her dentist and it was he who recommend an oral specialist here in Cork, Ireland.

On the first visit in mid-Sept they took a biopsy and the results came back at the end of Sept showing cancerous cells so we were referred to the South Infirmary hospital here in Cork

About ten days later we had the initial meeting with the surgeon who did a visual inspection with camera etc then spoke to us confirming it was cancer and was stage 1 he mentioned some of the steps taking including plastic surgeon who will reconstruct the tongue n bone

My wife them had an MRI and I think CT scan on head neck along with blood tests

Fast forward to today and a meeting with the plastic surgeon who reported that the surgeon will be taking HALF the tongue !! This knocked us for six when we heard it, it was when we heard this that reality really sunk in

The plastic surgeon explained what she will be doing with regard’s reconstructing the tongue and the jaw and how she will need skin grafts from the lower arm for the tongue and subsequently from the stomach area to help the lower arm heal

This operation is gonna take an entire day and a two week stay in hospital - from what I understand it will be life changing in terms of speaking and eating and loss of taste could also happen


So this is where we’re are on our journey I’d like to hear from others on this journey too

Thank you

Wow, that sounds like a lot for a stage 1. My first cancer (almost 20 years ago) was stage 1 and the final result was an operation much less than the potential described prior to the operation. It makes sense for the doctor to describe the worst case and hope it never gets to that.

I've been told by a leading cancer institute to strictly avoid drinking alcohol. This appears not to apply if the cancer is from HPV.

Hi Will: So sorry to hear about your wife Lillian's dx. Was just wondering if you considered getting a second opinion? Perhaps she might be a candidate for TORS at St. Vincents? https://pubmed.ncbi.nlm.nih.gov/33559869/ Recommend you look into it Best Rick

So on Tues we met the plastic surgeon, she was very nice BTW, and mentioned they would be taking half the tongue ( on LHS. We were quite taken aback by this as you can imagine

Because of this skin and blood vessels taken from left lower arm to replaced the part of the tongue removed and a further graft from belly to replace the lower arm so three wound areas
Hearing this my wife was very upset aa you can appreciate as this was only our second meeting with the doctors/ official.

On Thursday, yesterday, we were in the hospital meeting various support staff/ team members such as speech & language, physio, dietitian etc - was quite overwhelming the info bout recovery ( swallowing , soft food diets, what to expect when she wakes up)

Finally on Thursday afternoon had second and final meeting with the surgeon who will work on removing the cancerous section of tongue - at the first meeting he mentioned it was stage one but yesterday said he couldn’t say for certain until a post operative biopsy is carried out and results of this will determine post operative care if needed

The liaison nurse was very good and very positive saying my wife should recover well but we understand this is a major operation

Date for surgery Mon 14th Nov

Didn’t get a second opinion no

Hi Will

I am so sorry for you and Lillian. What a shock. I went through a similar process a few years ago. Stage 4 Squamous Cell Carcinoma tongue right side and also eventually found in one lymph node on right side of my neck. Doctors removed right half of my tongue, all nodes on right side of neck, trach tube for breathing, feeding tube for fluids/food. The tongue flap and artery came from my left arm as i am right handed. They rebuilt my forearm with flesh from my upper thigh. First indication of a potential serious issue was late Feb 2020. Positive biopsy was Mar 12. Surgery was Apr 1 and 60 Gray Units of radiation completed Jul 8. I was also warned of all the potential challenges - speech, eating, drinking, hair loss, permanent swelling, major dental issues (from rads), loss of flavor (from surgery but more from rads), etc. BTW, social drinker and never a smoker.

Let me preface the rest by saying everyone is different and everyone responds differently/recovers differently. Having said that, here is my experience and thoughts for you both. One of my best tools was writing. I started writing in journals as soon as understood how serious this was. Sometimes i would wake up at 2 am and write for hours - everything from memories of my childhood to questions i had for my medical team. I kept a book for thoughts and fears and one for specific medical notes. I went in for surgery a few weeks after California shutdown for Covid. My wife had to leave me at the front door. Doctors said approximately 2 weeks in the hospital. One of the key items was monitoring blood flow in my neck to my new tongue. I was told if your new tongue looks good after a couple days, odds are strong, after 7 days, essentially 100%. I was able for form words soon after surgery and walk with a spotter around the ICU. So many tubes and sensors that it took 5-10 minutes just to get out of bed. I learned to use the passy muir device which helped my speech. I was able to go home without the trach tube after day 8. The first few days were the hardest. I am happy to fill in details here. For some, they want to know, for others, it's overwhelming. I recovered at home still on a feeding tube. That came out after about 3 weeks. The key there was learning to take fluids with the tube in place. That gave the doctors confidence I could swallow without aspirating.

Radiation treatment started in late May. That was fine for the first 3-4 weeks. The last two were rougher as it has a cumulative effect. Burns your mouth and neck. Can have sores and sensativity. Loss of almost all flavors. The list of things i could eat got really short.

The doctors asked me to put on weight before surgery. I was about 165lbs and 5'-11" so fairly lean. I added 5 lbs in a couple weeks. Lost 15 lbs post surgery. Got back up in the low 160's before rads then lost another 15 in rads. I had to focus on eating. When i was on a feeding tube, it was hard to get all the calories in me. When I switched to regular food, i just ate slow. It took up to an hour sometimes as i had to learn how to manipulate and swallow. A vitamix or similar is key. I would dump avacados into nearly everything I mixed for high calorie count.

A couple hospital tips. Bring a long charge cord for your phone so you can easily use it from the bed or chair. Preload your favorite movies or books on tape as wifi can be spotty everywhere. I brought a small family picture with me and kept it by my side the whole time. Great for motivation and nurses loved to ask me about it. Helped me practice my speech. I also brought a writing tablet (boogie board on amazon for $30). Super simple way to write notes back and forth to nurses and doctors. Ear pods that don't have to be charged were useful too.

My recovery from surgery could be judged much faster than that from radiation. After surgery, i could see some improvement every couple days. After rads, I almost had to look back every couple weeks. Reading my old journal notes helped when i got frustrated. I would read back and realize i had come farther than i thought.

I live in Huntington Beach and love to surf and jog (and many other things but those are my current passion). It took a couple months before i could surf again but i was walking quite a bit even in the hospital. I was able to jog about a mile (super slow and easy) after about a month. I got stronger slowly. It took many months to feel my surfing and jogging was back to pre-cancer levels. But, I got them back. My speech is nearly normal and I can eat most anything. Foods are still slowly coming back as spicier foods are still too strong for me. Alcohol tastes terrible. I basically just drink coffee and water now. No biggie, it wasn't a big part of my life before.

A couple readings - a short internet story - google "getting cancer is like finding a lion in the fridge". Makes me laugh and cry every time. A very detail booked is called "Anticancer." Took me many weeks to get through it as it is sooooo content rich.

I did receive a gift from cancer. My faith grew in ways that today still amaze me. I look back and wonder how i missed that piece of my life for 52 years. Obviously, i would never want someone to go through this. But, there can be beautiful things that grow from it. There will be brutal days but from that we can grow strength and bond with all our loved ones.

Sidenote - I have been to Cork and absolutely loved it. Such a unique spot in a beautiful country.

If you want more details (happy to get as detailed as you like), let me know. I have been an open book about all this with anyone who is curious. We can set up a private exchange through this forum so others don't have to read it.

You can do this. Keep us up to date. Stay safe and keep the faith.

Nels

Hey Nels

Many many thanks for ye lengthy informative and positive reply and so glad to make your acquaintance

There were so many great suggestions in your email and we will take them on board with us, the idea of a journal is great and in a similar vein I had suggested to my wife to record her voice in the coming days after the surgery and again at regular intervals so when she is having a bad day, and she will have those, she can listen or look back and realise that her speech is actually improving - the speech and language nurse mentioned that your speech will be at its worst on the first day and so we bear that in mind, every day after the first day it will improve no matter how small

Nels your journey is almost identical to my wife’s in the speech of diagnosis to surgery and even the location of the cancer. With regards lymph nodes we don’t think they are affected but from what we can gather they are being removed as a precaution

Yesterday, Friday, was a tough day for us as my wife broke down and it was so upsetting to see her like this. I am trying to be positive for her and felt a lot of positive vibes from the liaison nurse and the speech and language nurse whom we met on Thursday

Nels thank you for reaching out to us across the Atlantic and for sharing your experience with us and fellow members on this forum

Cork is lovely but it rains to much

Will and Lilian,

I am sending prayers and positive thoughts to you and your medical team to get through this. Let us know how it's going and feel free to reach out with any questions either here or in a private message (click on your name upper right and scroll down to send a private message.

Stay safe and keep the faith.
Nels

My wife will be having surgery on Monday morning so please God all will go well

Will and Lillian

Sent many prayers and thoughts your way since we first messaged each other. Please update us all when you get a chance.

Nels

Evening all,

So today is 6 day post surgery and I am delighted to post that Lillian has responded really well, she is well on the road to recovery

Surgery started at about 8:30am last Monday morning and took almost 12 hrs during which they had to removed 4 teeth (one needing to be drilled), some jaw bone and also a portion of tongue. Whilst they were in that region they also removed some lymph nodes as a precaution and the plastic surgery team used some of her left forearm to replaced the portion of tongue that was removed.
We went into see her about 60 mins post surgery and it can be overwhelming when you see all the tubes and sensors attached to her however though Lillianwas very very groggy and only coming around from the operation she was able to give us the thumbs up!!!!

We have been going in every day and sometimes twice at day and each day we have seen steps forward - after three days the drainage tubes from her neck were removed, also the tracheotomy tube was reduced in size and a speaking valve installed and she is now able to talk with us through her windpipe! Today was the first day she didnt need morphine so another step forward she is still in pain and they have her on a strong paracetamol solution and blood thinner injections. Lillian has been able to sit up and go for short walks around the ward so all these are positive signs. The medical staff are really happy with her progress even from the second day onwards and tomorrow she is being moved from the HDU [High Dependancy Ward] to a general ward so that is great news.

Still on a drip fed feed and will be so for a number of days to come. The results of the biopsy should be back mid-week and the medical team will review and we should get feedback shortly after sp fingers crossed.


So thanks for all the good wishes, I will post another update in due course

Will

Wonderful news. Thanks for the update and looking forward to the next one. I keep sending more prayers your way!

Best
Nels

Hi all,

Everything progressing nicely stitches removed from neck and skin graft on the arm. On Monday Lillian started on puereed (so) dinner such as chicken, carrots, potatoes and stewed apples and custard

Lillian is still on a drop feed at night and I reckon once this is removed she will be ready for discharge, so happy days

More importantly the biggest news is that the biopsy of the removed tongue section shows that Lillian does not mean post operative treatment so no radiation !!! Best Christmas present ever!

Will update again further, stay safe

Happy to read your wife is progressing during this journey. I know it’s not easy, but a positive outlook makes all the difference.

I was diagnosed with Stage 3 tongue cancer in early May of 2021. Not a smoker, or heavy drinker. Needless to say, I was shocked, and had one day of “why me”? I then chose to remain positive moving forward and was very calm on the day of my 13 hr surgery. Half my tongue was removed, nodes removed, skin graphs done. Six weeks of radiation, of which included one day of chemo each week. I am still unable to eat normal, so my daily intake consists of puréed foods, or smoothies. Making the daily smoothies gives me the most calories I need to reach daily calorie intake. Is it easy? No. But, I find the daily things to keep me happy, and I’m alive. To this day, I am fortunate to say that my test are coming back clear.

Hi all,

Just a brief update it is now 5 weeks post operative and things are doing really well, relatively

Tracheotomy hole is almost closed, lower arm skin graft is healing quite well though Lillian does have some pain in a part of her wrist. The wound on her stomach has healed well too

With regards to the cancer it transpired that it was in the jaw bone but some of the adjoining tongue area was removed for good measure - still some pain and swelling in the area but this will take months to settle. Told it will be 6 months before her teeth (4 were removed) and hbe addressed. As mentioned before the best news is that no radiation is needed

When it comes to eating still on soft diet as swelling in mouth makes it hard, Christmas dinner will be a pasta based meal with stewed apples and custard for dessert

So all in all it is positive. Take care everyone

Will

Thanks for keeping us updated. So pleased that the recovery is going well and no radiation is needed. Best wishes for a safe and enjoyable holiday. Stay safe and keep the faith!

Nels

Evening all, Touching base with you all. Just over 12 weeks since the procedure/ operation and we have a follow up appointment with the surgeon who removed the portion of tongue/ jaw

We were originally told the cancerous cells were in the tongue but it seems it was in the jaw however they took some of the tongue too

So where are we at?
Eating wise Lillian doing OK and even back to having a lovely cup of tea. Food still gets trapped from time to time but all food stuffs are on the menu from chicken, chips, bagels and cake!!!

Her neck wound has healed really well and so has the tracheotomy opening. Feeling on the side of her mouth/ jawline and up to and including her right earlobe not there yet.

The biggest issue is the location on her left arm from where the skin graft was taken, it is still quite sore especially on the bend of the wrist and along what seems to be a tendon. It is constantly given her pain and causing her upset. Lillian is quite over protective of her arm, I encourage her to use it or do some simple exercises but not if it hurts her. It restricts her mobility in that she cant drive and is nervous of walking the dog in case Buddy pulls on the lead. So in all recovery is good but the skin graft location is still an area of pain/ anxiety. There is also loss of feeling on her left thumb too so maybe nerve damage or very slow recovery of the nerve.

Has anyone else had this? As in the skin graft being the location of long lasting pain?

Take care