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.

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 and anxious.

Cathy

Cathy

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hello Cathy

What a worry - no wonder you are feeling low. And just when Chaz is so happy and about to start his masters. As we all know (and hope), it may turn out to be nothing at all but it is the period of waiting to find out that is always so hard.

Not sure whether they do always say there is nothing to worry about when that is not the case but certainly it happened to me - the doctor who first examined my tongue cancer said "I don't think it's anything serious" when I could tell by his actions that he did. When they do this it means that we can never actually trust what they do say and don't feel reassured at all. Perhaps they don't realise how much we actually worry anyway, whenever anything is being investigated.

Sorry, I can't answer your question - hopefully someone will be along in a bit that will know more about it than I do. Just wanted to let you know that I am thinking of you and hoping so very much that everything will turn out to be OK.

Love and best wishes

Gwyn xx

Thanks Gwyn, I really appreciate your support. Fortunately, Chaz seems oblivious to the fact that it could be reason for concern. I just have to do my best not to show my worry, which I am finding hard to do.

Actually this is one time I am not desperate for results. I almost dont want to know. I just want him to be able to do his course. Isnt that awful...
Cath

Hi Cath,

The wait and wondering times are awful. Keep going and really hope things turn out well. Wish Chaz all the best with his masters, good for him.

Ken

Cathy

I don't think that's awful at all - perfectly normal. To wake up and find it had all been just a dreadful nightmare would be best of all.

The other thing I remember my consultant saying was that, now I had had mouth cancer once, they would be very quick to do a biopsy at the slightest indication that anything might be amiss and that this did not necessarily mean that there would be anything wrong at the end of it - they just have to be really careful.

Here's hoping that Chaz can complete his masters without ever knowing how worried you have been.

Love

Gwyn xx

This message has been edited. Last edited by: Gwyn Fraser,

Thanks Gwyn, well I seem to be vacillating between feeling positive and bring very anxious - the latter feeling usually sets in at 3am. I just wish I didnt feel so irritated that it wasnt taken more seriously when we first mentioned it 6 months ago. I dont think our main consultant is quite as good at communicating as yours. At least I have developeda good relationship with the main oncologist nurse specialist how is a gem.

Best wishes,
Cath

Cathy
It is natural and okay to worry but do not be afraid to chase the hospitals and consultants and harry them. Chaz may be perfectly fine - but what is the point of running any risk. I think we who have had it need pushing - I know I do - because we don't like to be a nuisance and we don't want to even imagine it could be anything so we create blindspots. I think I am going through one right now and my wife is trying to get me to make an appointment - yeah well - I am a hypocrite it's not do what I do it is do what I say!
The best way not to worry is to know you are doing everything you possibly could be - then what is there to worry about. It either is -in which case you have done exactly the right thing - or it isn't - in which case Whoooo- hooo!

By the way doing the masters is a great idea and should help him a lot so encouragement all the way!

All the very best
Hope I am in more pain than he is - and you are -
Tony

Well said Tony! Well I think its probably going as fast as it can. I just need to engineer our follow up apt to include an oncologist - dont want to rely on surgeon's advice.

Its not only fear of bothering the medics, I think one only has enough emotional energy to deal with one or a couple of side effects, fear etc at any one time. Its so draining and tiring.

I remember one occasion during treatment Chaz's heart beat dropped to 40 which is low for someone who usually has a fast beat. Of course it was night time and I called the ward that was on call for chemo patients and although they suggested we went in, we elected not to as we had spent 12 hours in the medical assessment unit of the hospital the week previous which had been horrible and at the time I just couldnt contemplate doing it again. I now think I must have been absoutely bonkers to take that risk! Just totally worn down.

Anyway I hope you take your wife's advice.

We'll have to see how the masters goes. At least its only 6 contact hours a week. Chaz had read most of his essential reading before term started and consequently came home last night after his first day saying he didnt feel he had been challenged! Still at least its getting him out to meet people. He met a 69 year old German Jew who is doing a masters in history. She had an incredible life story and whose parents had been very fortunate to escape death. That seemed to be the most interesting part of his day!

Hope the song writing is still going strong and you are going to come up with a ditty about chewing gum....or terrifying terrabites.

All the very best

Cath

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

Hi Cathy

That sounds like really good news - I am so pleased!

It is always so difficult to feel completely reassured, isn't it? Every little problem throws up huge uncertainties. But overall, it looks hopeful that Chaz will be able to get on with completing his masters without getting knocked off course.

Love

Gwyn