We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Base of tongue cancer - granulation tissue

NotFalling
Posted by

Hi everyone

Need some advise, in case anyone has been through same / similar situation

It is a bit of a long story really, in a nutshell I had hpv16 positive base of tongue cancer, lymph node removed at the end of November 2019, 4 tonsils taken out along with base of tongue cancer itself first week of January 2020. Had 2 rounds of chemo and 30 sessions of radio therapy which ended at the end of March. Had my PET CT scan yesterday, got called in this morning to discuss the results, which was quite fast. Mmmm they're a bix mixed, everything looks good apart from one little thing, there was a red area on the scan so I went to see my surgeon today (luckily he had time to see me), he had a look down with a camera and told me he saw something called granulation tissue. It didn't sound like this was the end of treatment / this whole cancer experience for me, sounded like there could be continuation  Researching granulation tissue online isn't reassuring. Area where cancer was removed from should have healed by now surely? It's been 3 months. But no, there is this tissue there now! Has anyone come across this before at all? Any advise is much appreciated

Thank you

NotFalling
Posted by

Forgot to mention, I have another follow up now in 4 weeks to have a look down with a camera again like today, also there is a possibility I'll be getting an MRI sometime in 2 weeks but it's not confirmed yet

Beesuit
Posted by

Hi

My PET/CT at 16 weeks (four weeks later than yours) had a hot spot where my cancer had been

False positives are fairly common. It might be that.

You really have to trust your team to be straight with you and to look after you. You shouldn't need to research. Ask them to explain what it is that they and you are dealing with.

I had a biopsy six weeks after my scan and there was no cancer

I hope you find some answers.

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

NotFalling
Posted by

Thank you so much for replying Dani

Yes heard about false positives, really hoping it's that, it's just that it now has added another 4 week wait, I get really anxious. My surgeon told me we'll know more on our next catch up. Want this nightmare to be over already, cannot stand a thought of another operation, had 3 already

chris2012
Posted by

Hi NotFalling, i know its hard but sometimes not to worry, maybe the radio and chemo have affected the healing properties of the skin, i have had a similar experience where i had two skin grafts fail due to the treatment so had to have them re-done, thankfully they took second time around. My first cancer was in a similar area, the floor of the mouth/base of tongue hence the skin grafts etc, i did not have cancer of my tonsils though. Its great that this has been picked up by the scan so the consultant can sort the issue out and monitor your progress a bit closer. I also had a wound that had to be cauterised because it kept leaking blood, again it was sorted very quickly. What you have to remember is your bodies immune system is low so maybe struggling to fix everything. I think by looking at these issues up on the internet can make thing worse as it seems its making you think its more serious, so as Dani said in the previous post, have faith in your consultant and the team as i expect they have seen this before. Wishing you all the best for your recovery, take care.

                                                                                      Chris x

Its sometimes not easy but its worth it !                Click here to find out more

NotFalling
Posted by

Appreciate your reply Chris thank you so much for your kind words

Yes radio and chemo has killed my immune system, I suppose i'm still recovering. In my case tonsils were taken out as precaution, wish I still had them, it was so painful! Yes I have faith in my team they are all awesome and looked after me really well through this whole journey. Not a lot I can do now but wait

Thank you once again

chris2012
Posted by

No problem NotFalling, I'm sure you will be ok, I also had three operations for head and neck cancers, but it all came good in the end. Yes, let's hope you don't have to wait too long for the scan. We are here to help if needed, take care.

                                                                              Chris x            

Its sometimes not easy but its worth it !                Click here to find out more

NotFalling
Posted by

Thank you so much for you kind words Chris, honestly it means a lot, thank you x

PFJTHS
Posted by

Not had the radio or the chemo - just the surgery.  I know what you mean about the tonsils and I had that done twice!

The team will be good and ensure that they have the right evidence to make the correct decisions with you.  Yes it does all take time, but that is better than rushing and having the wrong outcome.

And the uncertainty does wear you down.  But there is plenty of support on here.

Peter
NotFalling
Posted by

Hi Peter

Appreciate your reply thank you

O wow, I can only imagine how painful it'd be if done twice! Once was enough for me!

Yes uncertainty, lots of it, everything is on hold at the moment, want my routine back

Thank you

Disbloke
Posted by

More than likely the granulation tissue would be the least of things to worry about, as that means there's healing going on. The hot-spot on the PET/CT will be their concern. I'm 6 months post treatment had similar on my PET/CT at 3 months, ended up with decision being ultrasound in 3 months with possible biopsy.

Last Friday had the ultrasound and the did biopsy. They phoned yesterday, biopsy clear, US no cause for concern, booking me to get "bumps felt" by ENT in 6 weeks and another US in 3 months. At this stage though they are happy and there is currently no sign of cancer or anything that gives them any cause for concern. Trust your team, if there's anything you are worried about or don't understand just phone them they'll either be able to explain there and then or they'll get someone to give you call back to explain.

I will admit at 3 months with the PET/CT results I felt really bad and worried.

Hope you can get things explained so you can understand fully what they think right now, and that it goes well for you.

All the best, Kevin

NotFalling
Posted by

Hi Kevin

Thank you so much for your reply

I can only imagine what it's like to go for a biopsy 6 months post treatment, glad it's all clear and there is no sign of cancer, such good news :-)

Appreciate your kind words and reassurance, thank you!