Hi all

Although haven't posted previously,  have been often reading through and following this thread during last 6 months, when needng a boost/reassurance during treatment/recovery.  In April I had third tongue removed, reconstruction (from forearm) plus right side neck dissection.  So very inspiring to read of all your experiences, courage, support and friendship, helped so much, thank you!  Think I'm doing OK, swallowing still a bit tricky, due to tongue shape and dryness.  I also had base of tongue cancer (T4)  2014 treated with hefty chemo and radiation, which apparently makes recovery a little slower.  Tongue still feels really so prickly, cumbersome and speech tricky, seems more so now than the earlier months, am hopeful of further improvement over coming months, trying to be patient!

Thanks all again.

Mary62

Hi all,

I would just like to say thank you (especially to @Nicola2209) to everyone on this thread. Five years ago today I received the news that I had cancer of the tongue at 23, it was very scary in the early days and being on this thread did help a lot. I have been popping into the thread every now and then.

It is amazing how fast time has gone past, and all the ups and downs the last five years have had, having cancer certainly changes you and your outlook on life. I am nearly 29 now and thinking of the approaching big 30:grin:. I will always be grateful to you all and just for the fact that I was pretty lucky compared to others who have been though so much more. I have taken the positives from the whole experience and it has made me what I am today. 

Nobody wants to be in the club we are, but I wouldn't like to lose the value it has given me on life, perhaps I should have had before. It is of course sometimes frustrating that I can't speak as clearly, or there might be the odd bad day, but part of me values it. The shallow people of this world who can’t take a neck scar or having the odd trouble saying words can *** off. On the plus side its always a conversation starter at least in the right environment. I have learned you have to own what you are in this world and not compare yourself to others, otherwise you will go potty. Materialism or things or status don’t mean anything to me now, where perhaps before they wrongly did.

After five years, I slowly find myself forgetting completely for a few days at a time, and have a sense of being back to "normal". You can never be out of the woods completely, but I see five years marker for me as a time I can close the door on the experience and take with me what I have learned and move on. There is always people going though cancer, and I am not one to speak about it much unless invited, and I hope this post doesn’t seem to “me, me, me”, I understand there are people on here still going though it. It is good to see posts from those that are getting the all clear after reading their journey. My official all clear will not be for another few months last appointment wise but today is five years since 20/10/2014 so I just thought I would post. I wish you all good luck and will still be a lurker here! 

Regards

Space_1999

Hi bravo 

I am a relatively newcomer 14 month post radiotherapy for tonsil cancer but I keep popping on the forums to aid others like you have. 

Its a scary world out there for beginners and if we can give them hope all well and good. 

Onward and upwards to infinity and beyond

Hazel x 

Hi everyone!

Ive been reading up on this thread for the past 2 days. I dont have a diagnosis because i havent been to the drs yet. I just found  some white patches under sides of my tongue 2 days ago while checking how my new dentures fit. The patches are white and smooth i think, and upon googling(i know its the worst thing to do), found that it looks like leukoplakia and resemble some tongue cancer pics on the net. 

Im not able to sleep just thinking about this and wondering if im already too late at getting it checked, cause if im not mistaken i think this has been around for a long time and im just ignoring it as i thought it was normal. The white patches are around 2-2.5cm long and found at the back left  underside of my tongue. I never smoked, last alcoholic drink was like 10 yrs ago and im just 30 years old. I have a 5 yr old son which makes me really anxious whenever i feel or find something weird in my body.

Does anyone here have the same sign that led to their diagnosis?

Im really anxious right now but im glad to read that most of the people talking here are moving on quite positively with life. I hope i can be positive like lot of you.

Im hoping someone notices my post. Thanks

Kirsten just go to drs keep off Dr Google ,am sure all will be ok but go to drs nit all things nasty in the. Ouch are cancers it’s could be something as sinple as oral thrush so stop looking at get in ghe ohi e to settle your mind

Hazel x

I’ve not been on here in a while, but thought I’d come back to post an update for anyone reading this thread. I had a partial glossectomy for T3N0 oral tongue cancer on 11th June, plus reconstruction. 6 weeks of RT which finished on 30/08/19.

Here’s a summary of my experience post RT. By the end of treatment i’d managed to maintain the weight I’d been at the start of RT (I did lose some post surgery), and I didn’t need a feeding tube. The painkillers made that possible - fentanyl patches, oramorph, and in particular dissolvable aspirin multiple times per day. I was on a completely liquid diet but managed to get enough shakes down me. I continued on shakes for about 10 days post treatment, when I started to eat some soft food. Eating hurt a lot at first - particularly when I swallowed, in the back of my mouth. Some of the mucositis started to clear up at this point, in the parts of my mouth where it appeared last, ie on the opposite side of my mouth. From that point it was very slow progress, and I stayed on the strong painkillers for a long time - however, they enabled me to eat, and I gradually ate more varied and normal foods. 

About 8 or 9 weeks post RT ending, I started to reduce the painkillers, and by 11 or 12 weeks I’d stopped them all, including paracetamol. Basically, I took them until my diet was pretty much back to normal, or about 80/90% normal.  A week after stopping the last painkillers I went on holiday to Thailand where I was able to eat in restaurants with friends, lots of Thai food, and have a couple of glasses of watered down wine. Spicy food however has to be extremely mild, or it burns like hell! I’m not drinking much now - my cancer wasn’t caused by smoking / drinking so there’s no reason I should avoid it totally, but I don’t have much inclination to drink. However when I do, it no longer needs to be watered down (4 months post treatment ending). 

So where am I now? My treatment area wasn’t extensive, it was the left side of my mouth only. Side effects from RT that I still have - tightness in the left side of my jaw at the back, and the back roof of my mouth is still quite tender - that’s where the spice burns! My first MRI showed I have a bone marrow hematoma in my jaw. It’s quite painful and tender in that area, but the doctors aren’t worried. That’s about it, as I think the other side effects are actually from the surgery, not the RT. They are:

- tightness and hardness in my neck from the neck dissection - but this is continuing to improve.

- a slightly crooked smile from nerve bruising - also improving

- dry mouth at night, as one submandibular gland was removed. My saliva is fine during the day.

- the free flap reconstruction has left my tongue slightly tethered, so I don’t get quite as much force when I swallow. This makes certain foods tricky - salad, foods with lots of fibres like meat or fish. But really good quality, perfectly cooked meat and fish are fine. :-)

- I can’t properly clear parts of my mouth due to lack of tongue reach, so have to swish with water after I eat.

However, I’m only 4 months out, and I’ve only been eating (almost) totally normally for a month or so. Things are improving all the time. I was on the painkillers much longer than the doctors said I would be, but that enabled me to get my normal diet back fairly quickly. 

I’ve had my first follow up MRI and there’s no sign of any cancer. I have a pretty good chance of it never coming back, so I’m crossing everything. I’m only 39 and we’d love to have another baby (I also have a 14 month old), so I’m hoping it all continues on the right path. I’m pretty happy, and life is returning to normal. I’m back at work full time, having started to ease back in slowly from about 5 weeks post treatment. My speech is 95% normal - just the odd word that takes a bit of effort, and marginal lisp. 

I hope everyone on this thread is doing well. 

you are doing doing do well , I’m few months in  my sugery was September the 9 th , had a few hiccups but partial tongue removal and neck dissection luckily no RT or chemo needed , recovery been  hard my tougue feels strange , I’m pocketing  found , and it feels tight and quite thick , biting tongue and gums on odd occasions , diet a little better , I’m 12 lbs Weight  loss  , but have coeliac too do diet very limited , my neck still hard and uncomfortable , but my shoulder bern the biggest problem , having physio now , still needing some sting pain killers occasionally , not back at work yet , but my job very physical as I’m a heakthcsrecwith complex and end of life children and young people , im

missing my job so much , but know it’s not worth the risk I need to be safe , emotionally I’m better now ,but I would not wish it on anyone , my health never bern simple , but this as really took its toll on me , but im

here and I’ve rnjoyed Christmas with my family do to be able to see my grandchildren open pressies it was worth it all , love to all you

liveky cancer hero’s best wishes for 2020x

Hello, this is my first time posting here. 

I have recently been diagnosed with tongue cancer on the base of my tongue, it hasn’t spread anywhere else according to mri and ct scans and am awaiting a date for my surgery (robotic partial glossectomy). Has anyone else had this? I won’t know if I need radiotherapy yet until after surgery so that’s a possibility. 

Thanks