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.

Well apparently they do it in special clinics once a week and as we are on the NHS - which by the way I think is a fabulous institution - I am not sure we can hurry it. He is having the FNA on Monday and then I think it will take 9 days for the results to be back and reviewed by the team. I dont really want the results before the team have seen them.

I suppose my real question about the FNA is that if its inconclusive it takes a long time to reach diagnosis. Chaz had FNAs to start then they sent him for an excision of his suspected cyst which turned out to be cancer, then he went for a pet scan that showed activity in his tonsil, then the tonsillectomy - that all took about 10 weeks. If he had been sent for a pet scan first they would have been able to see the tonsil cancer and probably the cancer in the cyst then they could have proceeded to tonsilectomy (biopsy) and neck dissection possibly in the same op. I think that would have been more cost effective in the long run and given him a better chance. That could have been done within 4-6 weeks and allowed the treatment to start on his primary much sooner. As it happened there was a 10 week gap between the excision his neck node and the start of treatment on his primary. I always wonder what might have happened during that time.

I'm new to this site. Just figured out that FNA must stand for fine needle aspiration. My brother saw his ENT presenting with right neck lump sometime in late 2004 or early 2005 I think. Then in May 2006 he went back to same ENT with lump much larger & the dr. finally did FNA. Diagnosis was squamous cell head & neck cancer of occult origin. The day before he was to do a radical neck surgery on my brother Mikey, he phoned me to discuss the prodedure and while on the phone with me he was shuffling thru my brother's chart ... and said "looking back in your brother's records, I see that he came to me with this same lump over a year ago. Did you know that?" I said yes I did. The doctor than astonished me by saying & I'm quoting here: "I don't see where we did a needle aspiration at that prior visit. I don't know why we didn't stick a needle in it then, but it could have been cancer then... but now we'll never know." This doctor was well aware that my brother is a heavy smoker and drinks too much. Both of those habits should have alerted him to FNA the lump. I was so shocked I almost shouted into the phone ... I bet if it was your brother or your child or your spouse you would definitely have STUCK a needle in it and found out if it is cancer right then ... not a year later. I didn't say that to the Dr. as he would be cutting my brother's neck at 7:30 the next morning. Mikey just had PET yesterday and same dr called me to saw the good news it it showdd NO cancer but he said Mikey's jaw problems could leave him terrible disfigured if they have to remove much bone. I just found this out this morning. Mikey doesn't know yet. I glad to have this site to vent and find some answers from other care givers and survivors.

Cathy, they will have those results in a few days at most, give them three days and then start calling. No one should have to wait 2 weeks, it's cruel

Hi Patty and Nancy,

Patty you must be mad as hell! Our diagnosis process was similar I think Chaz had had a few problems with his partoid months before the lump etc...never really been explained whether they were related.

Nancy, I think they only phone patients with results here if you are private - not sure, but I wouldnt really want results without treatment options and that takes a meeting of the MDT - I think you call them the tumour board in the states that happens once a week. By the way I am fascinated that doctors are able to give results to next of kin in the States. Seems that in the UK patient confidentiality doesnt allow that. I cant get any informationa bout Chaz's case unless hes in the room with me or authorises that it is ok.

Anyway good news is that I chatted to the oncology nurse and she is being very supportive with follow up etc - I was honest with her about my reservations about the ENT consultant and she has offered to help with that.

Bad news is that Chaz went down with a bad cold and chest infection on Thursday which has only added to my worries. Its the first time has had an infection since just before diagnosis...

Well when we went in for the ultrasound they had a good look at all of Chaz's neck and submandibular area but radiologists could find nothing that looked peculiar enough to warrant an FNA. She said there was some asymmetry but that was likely due to surgery and radio. I guess I am satisfied as whatever the dentist could feel has been there for between 7 months to a year and I am assuming of it was sinister it would look abnormal enough on ultrasound to warrant further examination by now.

I am still a bit worried about his lungs. I cant help reading bad omens into the fact that they had to do a second plate when he had an xray and the horrid bronchial chest cold he has had for the last week which knocked him out with a low grade fever for a few days. But on the whole am feeling much happier.

Thanks for all of your support.

Cathy

Good news cathy xx

Caths, In the states we have to sign a consent form for info to be given to relatives and list them by name. Kathy, that is good news.

Cathy, happy to hear that things went well and everything looks okay. Did they do a CT scan as well? Hope he feels better soon

No Nancy they didnt do a CT - the radiologist (whom I spoke to personally) said they couldn't see anything that raised any concern on the ultrasound and as another ENT and denstist said that what they could feel didnt feel sinister I think we will have to leave it at that. I think I am going to have to go with them for the moment as whatever the dentist can feel has been around for at least 8 months possibly even over a year and I feel if it was the dreaded c it would look like something that demanded an fNA by now.

We had his lung xray back yesterday and that was declared normal which is somewhat amusing given that we know that he has a small area of lung collapse that showed up on CT last year.

ENT jokingly called Chaz a fraud for being so well and to be honest I cant push for anymore. I would love him to have a PET scan, but they dont do them routinely here and Chaz just would not go for it. Chaz isnt concerned and just wants to get on with his masters. he says the latest round of tests were all about me rather than him - true to some extent as he is my life. If I push him any further I'll lose him because of what he perceives to be my obsession about his disease rather than cancer itself. I 'm getting to the stage where I would rather settle for a shorter happier time with him than a longer miserable relationship fully of worry and hospital visits with me being seen as the big reminder of his cancer. Besides I dont think I could go through the anxiety I have been feeling waiting for the lungxray again were to have a scan. I have always been a real worrier and the anxiety over scans really interferes with my sleep and my work.

I think I have to stop taking responsibility for his health. But it is hard as he has, up until now, complicitly allowed me to to do so - not reading anything himself in the knowledge that I have been doing lots of research. after spending quite a bit of time on these boards, I have started to wonder whether women with SCC head and neck tend to fare better because they take more responsibility for their health and push and challenge the medics more than men do? Rash generalisation I know, but I can see signs of my father (who died of cancer caught late cos he would never go to a doctor) in Chaz..... Embarrassed about causing a fuss etc....may also be a class thing...Chaz comes from a relatively poor background and doesn't have much confidence. I grew up in an enviroment where my dad was a big cheese and have always been happy to challenge power and authority?

Anyway I am digressing. Another thing I wonder - has there been any research to demonstrate that routine PET/ct mRI scan after treatment produce a survival advantage. Could do a random trial of patients in the uk and US. Would be very interesting...

Cathy

Cathy, it would be interesting to look at the differences between outcomes/treatments in pts in US vs.UK. Not sure if anything has been done along those lines.
With regards to f/u scans, Peter, gets a head and neck and chest scan every 6 mos. I believe for the next few years. His baseline CT scan showed ? chest nodules and they repeated it at 3 mos but no changes in size. The oncologist told us the frequency of scans is dependent on how worried they are about reoccurances but they always do more the first few years and then do less but it will be at least once a year. I guess it varies with each individual.
The head and Neck surgeon videoscopes his throat and larynx every 2 mos now for the next year. I find this to be the most reassuring since you can visualize everything. Sees the RO and oncologist every three mos. Everyone puts their hands down there and gags him and they all have said the scans are needed in conjunction with their limited ability to see or feel anything
He just had his second round of scans and we are waiting for his results which is very nerve racking. I only hope they are ok.

I'm in a similar situation since Peter forgets he has cancer. This is how he copes with it, denial. He totally blocked out the whole past year which is probably good. I only wish I could! he just wants to get on with his life. I make all his appts and ask all the questions. So I do all the worrying for him
These guys are tough to deal with as pts!
Nancy

Funny that Cathy,Rob only had one CAT scan when he was pre operative and that was to check for spread.When he had the recurrence they only did MRI which shows everything.Collapsed lungs dont stay collapsed by the way,they do reinflate..
Any way good news by the sounds of it.
love liz