So far it’s SCC base of tongue, metastasised to 4 lymph nodes in neck. Preparing to be scoped and scanned...

Hi all the colours,

Wow ! That is quick, I had scc base of tongue with 2b lymph  nodes in neck,regards pain breast bone I think you're right with reflux anxiety etc,suffered myself with heartburn etc and have just started again recently with it.

Dont know offhand what panendoscopy is,I was treated with radiotherapy and two bouts of chemo, anyway good luck with pac and mri for tomorrow, keep us in the loop

Thanks, Martin,

(A panendoscopy is when they scope pharynx, larynx, upper oesophagus and trachea.)

Did you have surgery as well as chemo and radiotherapy? They’ve already said my lymph nodes have to come out.

Allthecolours

Heavens that’s quick

Is that private may I ask? If not where are you being seen?

Lots of us had reflux with laryngeal and breast bone irritation. 
I had base of tongue SCC but no nodal spread so just had RT for 30 fractions. 

Good luck and keep us all in the loop

Theres lots of help here in managing treatment side effects which can be considerable 

One bit of advice I might offer is to take somebody sensible with you to your consultant appointments. They will hear what you don’t 

No surgery, 35 sessions of radiotherapy and two sessions of chemo cisplatin,one first week, second session fifth week ,chemo was there to mop up the cancer cells in the lymph nodes ,both did the job and confirmed last week tumour from tongue was gone and lymph nodes were clear .

I was told what I had was HPV virus related as I never smoked and didn't drink alcohol regularly 

Hi 

After I had had mri ct scan and biopsy , I was then sent to our main cancer centre at Leeds .i had tonsil cancer with several effected lymph nodes  I wasn’t offered surgery in my case I had 35 radiotherapy sessions and 2 chemotherapy treatments and now 17 months post treatment are living my life .

when at cancer centre I met my oncologist who with rest if m d t team has already met tomsiscuus my case I then had a pet ct scan to ensure no further spread .

good luck and welcome  acid reflux is quite common 

Hazel

Thanks, Beesuit,

Reassuring to hear about the acid reflux.

It’s not private; just my local hospital in Tunbridge Wells. I am very lucky! 

Yes, I will need lots of info on side effects. I have a “leaky blood brain barrier” because of an autoimmune condition, so I suffer terribly with side effects. You’ve reminded me I must ask rheumatology how this might relate to chemo and radiation.

My longsuffering husband has been coming with me to everything and taking notes (can’t read his handwriting, though, LOL).

Grateful for your reply.

Thanks, Hazel,

All this information is so useful - thank you.

Xx

Allthecolours

Hi

My hubby was diagnosed with SCC, tonsil cancer with secondaries in neck.

Hes just finished treatment, 30 radio and 6 chemo. No neck dissection due to likely capsular spread (I don’t actually know what they mean by that as we already know it had spread).

Anyway.....have a look at our profile and shout if you think I can help in any way.

OMG, I just read that you were both diagnosed at the same time: that must have been impossible to take in for a very long time! You poor, poor things! My husband has a little cough and a I’ve been on at him to go to the GP about it. Also loved your comment about the bell ringing, or lack of it!

Anyway, thanks so much for your reply, and much love to both of you.

Allthecolours

you sound as if you have an excellent team on your case. 
it’s times like these that you can see where the NHS isn’t broken. We all here can attest to how wonderfully we have been taken care of.