Bit of background: Chaz's dentist noticed that Chaz's RHS (side of tonsil cancer) submandibular gland or a submandibular node was swollen or bigger than the other side well over 6 months ago. I remember posting here about being concerned at the beginning of April.

Consequently we pointed it out to the ENT consultant at a check up on April 8. He dissmissed it, in retrospect rather flippinantly. Chaz subsequently had 2other 2 monthly check ups during which his neck was examined by 2 other ENT people and 1 oncologist. We didnt mention the enlargment on these occasions as there was usually some other issue to be worried about :-).

Last Sunday we were at his dentists and she gave his neck a feel before he was about to have a massage and said although she didnt think it was anything to worry about the swelling may have got larger and it would be a good idea to have an ultra sound to establish an objective measurement.

I immediately felt concerned, particularly as I have been quite worried about some (daytime) sweating events Chaz has been having, and contacted our oncologist specialist nurse who agreed to come to Chaz's regular ENT outpatients appointment last Wednesday to support our request.

At that appointment - yet another nice ENT registrar felt Chaz;s neck. He said he didnt think it was anything to worry about but has arranged for a FNA and ultrasound in about 10 days time. That has got me really anxious as I have the feeling that they always say there is nothing to worry about as a matter of course. We were told that all the way through he diagnostic process last time and it bloody well was! Cant understand why he didnt have a look at the Feb scan anyway just to see whether there was likely to have been any change. BTW how risky are FNA's. They seem to be pretty inconclusive and surely they introduce the possibility of Excapspread or implanting cells in skin which would not be good news for someone who has already had radio?

The ENT expressed surprise that we were worried about the submandibular nodes as they do not drain the tonsil area. I cant understand that. Why would they bother with extensive neck dissections for tonsil cancer patients that include the submandibular region if it wasnt at risk of recurrence? (Chaz opted not to have a dissection) Presumably there is always the risk of second primaries in the submandibular or in areas that drain into the submandibular region anyway? Which incidentally he did not look for.

I just wondered whether it should be an ENT person looking at submandibular issues. Wouldnt it be more approriate for a maxiofacial prof?

I'm so cross that this wasnt explored back in April when we first raised concerns. Chaz has just started a masters and is the happiest and most excited I have seen him for ages. If this turns out to be something sinister it will break my heart.

Thanks for listening. I just needed to get it off my chest. Feeling very depressed, angry and anxious.

Cathy

Hi Cathy
I am so sorry you are having these worries,and there is not much i can say on the technical side of things really.I have learnt never to say never where this disiease is concerned so i cant comment on the chance of submandibular spread.this will be a worrying time for you i know but an FNA should clarify things.

love and hugs liz

Thanks Cookey, luckily Chaz is oblivious of how serious this could be. I am just having a hard time hiding my fear. I alsmots dont want him to have the test...I'd rather not know about anything that might spoil his course...isnt that awful.


Hope you had a lovely time with Debs.

Big hugs,
Cath

Help can someone answer the technical questions in my opening post pls.

Thanks

Difficult one cathy as the system is so different in the USA.Robs specialist was a head and neck specialist i dont think max fax would cut it but do you have an oncology consultant?The lymph glands in the neck drain from all structures above and if you get tonsil problems you nearly always get involvement with the parotid gland which is where robs secondary was.Its located just under the lower jaw bone on both sides (its the one you gat mumps in)An FNA isn't risky its just a very long fine needle placed in to the swelling and they withdraw fluid(if there is any)The fluid will show up any cancerous cells,but is not always definitive.

Thanks Liz, this is an article that discusses the risks of seeding during FNA http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=502850. I seem to remember that Chaz's first inconclusive FNA was a bit f a fiascoand didnt sound as if it was carried out by someone experienced. I did ask our clinical nurse oncologist about whether the NHS followed best practice and she said "now we have special ultrasound clinics". Think I am going to go in with him and be the carer from hell which will embarras Chaz, but thats life!

Re ENT - My current problem is that we have been moved back into ENT outpatients which means we dont see the oncologist anymore. Unfortunately I now have even less confidence in our ENT consultant than I did a year ago when it tookhim far too long to diagnose Chaz. He has a dismissive attitude and always comments on us being worriers which is not helpful. He was certainly very dismissive when Chaz mentioned this swelling back in April. I think I may see whether we can engineer the follow up appointment to be in the cancer centre as I hope the MDT team will be able to review the results prior to that visit. God its still 2 weeks away - I am finding it so difficult to seem happy when I am so miserable and having real trouble sleeping.

Thanks for listening.
Cath

Cathy, if you don't trust the ENT don't go back, especially if he has a dismissive attitude. Can you see a head and neck specialist or go back to the cancer center? if you can't, ask for another ENT and tell them it wasn't a good fit and you need to feel comfortable and safe with whoever you go with.
My husband had a FNA and that was how he was finally diagnosed after more than a year and a half of seeing ENT's who told us not to worry "it's not cancer". Anyways, an interventional radiologist did the procedure with a CT scan (I think it was a CT scan)and ultrasound. I was anxious too about seedling but we did it anyway.
From what we've been told, the cancer can reappear anywhere in the oral neck region. Have they checked Chaz's thyroid levels since he was comlaining of sweats? Just a thought
Good luck,
Nancy

I think when the question is: to know or not to know, and that is way more important than the remote chance that an aspiration might let loose some cells. These cells are going to metastasize on their own without the need for a FNB to be the catalyst to do so, so in my opinion to not do it for fear of spreading something is holding you in the "we don't know what it is" place unnecessarily, and letting a potentially dangerous situation go undiagnosed.

FNB can be hit and miss. But someone that does lots of them is going to punch the needle in about 5-7 places, ensuring that a representative collection of cells is made. It sounds worse than it is, afterall it is a "fine" needle.

Thanks so much. Of course you are right, he must have the FNA and I must make sure we end up talking to the MDT team what ever the results. Waiting 2 weeks is going to be really tough I am finding it so difficult to pretend that I am not worried.

This is such a simple procedure, and only takes a few minutes to collect the cells. I can't believe they are making you wait two weeks for a 5 minute procedure. Perhaps you should push them some. In this game you have to be your own advocate, and not be satisfied waiting on doctors that decide to play golf, go on vacation and who knows what else.