Newly diagnosed tongue cancer - awaiting scan results

Hi Lauren. Fingers crossed he can avoid it. 

Yes, let's hope so! :-)

Sorry a bit late on catching up with this thread...

The neck dissection really should make little difference to his eating.  I had 2 on the RHS and most nodes removed as a precaution. 

I have found that my saliva is a bit lacking - but nothing like what happens during radiotherapy - and my throat occasionally feels a little like something is stuck in it.  It is an annoyance rather than a problem.

Other side effects I have are around nerve damage.  I can scratch my neck and it feels like I am touching the top of my ear!  I actually find that amusing.  My right chest is tender from nerve damage (quite liveable with) and I cant stretch out with my right arm to pick up a drink, but I can life a heavy weight close to my body.  I can live with that.

Physio is very helpful and I find hot "massage" type showers on my neck and shoulder help a lot.  Use some E45 cream to massage the neck.  That does 2 things; it helps the scar and it teaches you to touch and feel the area so you can detect any changes early on.

Hopefully, this tells you there are side effects, but unless you are really unlucky they are quite liveable with.

How is it all going?

I’m so sorry that the uvula was damaged. I hope things have calmed down a bit.

I had a neck dissection at the same time as my hemiglossectomy on Oct 5th and I have been lucky enough to have no shoulder issues. I have a loss of sensation in the outer rim of my ear from about a third of the way down and then above the scar probably about 3/4 of the way down to my chin below the jaw line. 

My full smile is still rather crooked, but is improving gradually.

I also hoped to avoid RT but a good look at the histology and a second opinion meant that it went ahead. I’m nearly 7 weeks out and although the process wasn’t quite as bad as I initially imagined, recovery for me has been quite slow since.

have you had recommendations yet?

take care xx

Hi all, we had his post neck dissection appointment today and our consultant was pleased with how his tongue is healing and his speech is much better than we thought so that's positive.

However, we did get some bad news unfortunately regarding the nodes. They took two out and they were found to be cancerous, they always said there was going to be a 20% chance of this but it's hit us both hard as he was doing so well after the 2nd op! They want him to have 6 weeks of radiotherapy starting in about 5 weeks I think. We have an oncology appointment next Friday so if anyone has any key questions we should be asking please let me know.

My worry now is how do we know that there isn't any cancer anywhere else in his body? They are still saying it's an early T1 cancer but should we now be asking for a pet scan? I guess our minds have gone into overdrive as we were both hoping today would be the end of the journey.

thanks in advance for any advice xx

Hi Lauren so sorry to hear your latest news.

A diagnosis like this inevitably has your mind racing about all  possibilities but knowledge is power. 
Do get back to your oncologist to clarify. 

Spread to the lymph nodes is quite common and most radiotherapy is tailored to treat them as well. It also depends on how the lymph node is infiltrated. 

I didn’t have any node spread on MRI, CT or Ultrasound but they treated my lymph nodes anyway

They do chest CTs to check for spread to the lungs which is the usual ( but rare) place this cancer goes to. 
That would cover most eventualities 

I haven’t heard of anybody having a pre treatment PET/CT unless the clinicians were still looking for a primary. 
Please do ask why they feel the likelihood of metastasis outside his neck is unlikely. It will put your mind at rest. 

Best of luck and let us know how it goes. 

Hi Lauren

So sorry that your partner has to have further treatment but it is the usual protocol for what they've found.

I'm assuming the CT scan your partner had right at the beginning should.have picked up any other areas of concern but you need to check.this with your team.

Linda x

Hello Lauren, what a rollercoaster for you both. If it helps, I had a CT scan, MRI scan followed by a PET/CT scan and  a needle biopsy before any treatment started. I had a lesion in my throat and a lump in my neck and the initial panendoscopy was apparently nothing serious according to the surgeon in my recovery room. However, they did then discover 2 lymph nodes were affected. That said, my PET/CT scan showed no spread anywhere else. They have never found my primary, so that may be why I had the whole book thrown at me beforehand !! Ask your team, and I hope you get some clarification. All the best.

Tricia

Hi Lauren en I had lymph nodes that were effected. My order was needle biopsy scc found thrn chest x Ray thrn ct scsn next day mri scan with contrast .Biopsy then there was a m d t t meeting held at cancer centre I had meeting later same day with oncologist treatment plan discussed. Dental  appointment next day. Following week pet ct scan to check no further spread. Mask made another planning scan then treatment 35 radiotherapy sessions snd 2 of a planned 3 chemo. When you meet oncologist ask if there will be a pet ct scsn. But I wouldn’t worry as t 1 is early stage i was T2N2Nm and my treatment was successful. Spread is highly unlikely but make a list of all questions as your mind will go blank . 
keep off google the facts are out of date in many cases. 
treatments hard but if I can do it anyone can. 
keep in touch Hazel x

Hi - am new to this site and came across your post - am please to see it was 3 months ago as by now your partner hopefully will be well on the road to recovering from his operation and I really hope is ok.

I am 6 weeks post my tongue cancer operation and what you have written could be my story - exactly the same ! An ulcer that didn't go away .......etc etc........how is he now and how are you as well. It's been a really brutal time for us and this recovery is very hard with speech therapy to stretch my tongue daily - its been so stressful to say the least - be great to hear from you . Wishing your partner all the very best,