Sinister Neck Lump and Mutant Tonsil

Hi Pamela

The PET/CT is a sensible precaution. They have to check the other lymph nodes and your chest of course. They would be negligent not to and it’s routine. 
I didn’t have any nodal spread so just had a chest CT

I didn’t have any surgery either. Just radiotherapy. 
Getting away without a neck dissection is a blessing. 
Ive sent you a PM. 

Pamela 

Sorry to hear this, but so far it is just a change in strategy. Extra capsular spread means surgery is not enough as they won't know what to remove to be 100% safe. Plus there is not much to remove there. In my case they found extra capsular spread during the surgery. So it was chemoradiation anyway, but 6 weeks later. In your case they will try to kill it by radiation first and surgery might not be necessary at all. The idea is to start treating it asap as it is growing (mine was slow) and radiation is weapon of choice if you need to attack large surface fast

Dentist is important as you will need teeth protectors from day 1

Thank you all for the replies, I think I just had the idea of removing it instantly to have some instant relief albeit pshycologically. I was a bit upset at the differences in what they tell me and what they put in the letters, doesn't do much for trust, Im probably reading too much into it.

I was expecting more than one person at the MDT from everything that I've read, I don't even know who my oncologist is and have no dates at all and no appointments booked, just that I will get a call.

Pamela

just a quick reply after your pet ct scan they will compare c t scans at most likely another  MDT to discuss treatment plan .Every hospital have their own ways of doing things my MDT consisted of 9 people which freaked me out to start with,it was only after everyone’s was introduced and I was asked did I mind 2 students from Turkey and the MacMillan nurse with a trainee I thought ok these need to learn .One of the students are still in touch with me now back in Istanbul and running his own clinics.

keep in touch 

Hazel xx

I doubt it was an MDT So don’t worry 

It would have just been a consultation with you  

I never knew how many bodies there were at MDT meetings. I was never there. In fact I’ve never heard of patients being there at all. I suppose the logistics must be quite difficult if they invite the victim as well. I mean the whole team from radiologists to histopathologists to oncologists to dieticians to surgeons to dentists meet to discuss everybody on their “books” on a weekly basis. They would have to slot appointments in between that. It would take all day
We did spend time discussing my treatment plan but only when the MDT had met and I did have the odd student or two at the consults but there’s no way I’d ever let a student anywhere near my nose! 

Hi Dani

suppose MDT is wrong  name it was  the Macmillan nurse who said MDT to me as at that stage they had had the big morning meeting where all, patients were discussed. With my case they had the oncologist and the surgeon in as they were discussing whether to do neck dissection first but oncologist was reluctant due to one if lymph nodes   proximity to spinal area. So they wanted me to meet both of them hence the multi disciplinary team that Macmillan said but poor me had never been in hospital apart from childbirth I didn’t    know any better .suppose ive always called it MDT as that’s what I was told at the time. As it happened they decided looking at the scans in front of  me that surgery was ruled out .the vagaries of hospitals .

Hazel xx  

Hazel you’re nit entirely wrong.
im sure I’ve read Hellebore saying that we should insist on being at MDT meetings.
All different aren’t they? 
At least I got to meet my oncologist on diagnosis and it was he who sat me down and ticked off all the horrid things he was going to do with me and all the equally horrid side effects I might get. 
Having said that I never saw him again till six weeks after RT finished but all my follow up onc appointments are with him. 

Can I ask, did anyone feel really ill before treatment started, I have lost loads of weight, having night sweats, though not as bad now, Im having hot flushes during the day that leave me nauseous, I have terrible phlegm in my throat and feel like I'm constantly clearing my throat. Also have lots of heaviness on my breastbone, feeling a bit wheezy but no trouble breathing and been for a 5 mile walk today, worried as everyone seems to be relatively healthy going into treatment

Pamela

Same here it was the macmillan nurse that said it was my MDT, she said it at the diagnosis and on the follow up call next day.  As far as I'm concerned it just delayed things further as I could have had the PET scan done at my referring hospital, instead of having to travel 90 mins then having to wait for them to send it over. I will hopefully meet my oncologist at some point this week, any idea how long it should be from now roughly, I will need dental work as I have a major dental phobia and don't go very often

Px

Hi Pamela 

Sorry I was perfectly fine apart from Larry the lump in the hollow of my collarbone.

Strange your Macmillann nurse used same words  wonder if it’s how they are told what to say. I was also a  90 minute drive from cancer unit on a bad traffic day! 

 Just go with the flow tell them about your dental phobias I was lucky as I do go every 3 months if you do need dental work it will be ti your benefit they won’t take teeth out unless they think treatment will cause more problems afterwards , as it can then be problematic in first 12 months after if extraction s are needed. Glad you’ve done a 5 mile walk fresh air is good for you. 

Hazel x