Now it begins! Highs and Lows to Date.

1 minute read time.

FormerMember

19 Feb 2013

Hi all, 2 days away from primary tumour removal and a host of other indignities (including removal of 8 teeth in preparation for chemoRT), I thought it a good opportunity to review the highs and lows to date.

Highs have got to include the fact that I am only T1N1 or N2A so probably have around a 60% chance of beating this, also that pain (to date) is managed to zero with a couple of diclofenac per day, Consultants and MDT at Torbay Hospital who are just incredibly talented, gifted and dedicated individuals.

Lows have to be making my own treatment decisions in the face of 2 arguing Consultants, one saying neck dissection, no chemoRT, one saying chemoRT whatever you decide (I went no neck dissection / chemoRT as I was pretty much convinced I would end up having it anyway).

Major low is that as I am having IMRT, I have to go to wither Exeter or Plymouth and will lose (that is what it feels like) the MDT team I have at the moment and in whom I have built up total trust in - THIS SUCKS!!!!

Another 2 highs are that you can actually improve your chances of escaping permanenty side effects (swalllowing exercises - I can post these if anyone is interested) and with the invention of IMRT and surgical robots there can be a reasonable quality of life after treatment.

So just waiting to go now, I will follow up next week when I have fewer teeth and tonsils and am probably totally peedoff with eating mush and pining for a Red Duck Curry :-( !!!

Be in touch,

FormerMember over 11 years ago

HI Colin

Sounds like you have been in the wars. I am in a similar position in so far as T2N2aM0. I was told the best approach was neck dissection, not without it's risks, bi-lateral tonsillectomy then afterwards, depending on outcomes possibly chemo/radiation. I am told this is a stage 2-3 type because of the tumour size but as the tonsil hadn't breached and was contained the size is a little academic.

My tonsil tumour was contained but grew fairly quick from next to nothing in the 15 days before surgery. Fortunately it was contained and like you had tests around the mouth and tongue which all came out clean. The lymph node in neck was different, about 3cm (20 plus removed and only one bad) and had breached the capsule but the tissue surrounding it tested clear. I was recommended six weeks chemo and radio, one chemo on a Monday and five radio per week.

I am so far managing well all the side effects of the operations, sadly left side jaw is battered as stubborn wisdom tooth removal plus the dissection all gang up to stiffen that side. I am doing all the usual exercises they give you but wanted to ask what other experiences they have any tips for coping.

Just finished week two and dry mouth is so sore but getting better as I stopped the anti vomiting pills. I was sick because I was given cocodomel post PEG install and they forget the stuff to undo the constipation it causes.

I'm still eating and swallowing OK so think I buy myself another week before suffering, that at least gets me halfway. Tomorrow is chemo 3 of 6 and rad 11 of 30.

My consultant said from the start, he believes in neck dissection if any node involvement and although I was told post surgery no detectable disease but likelihood stray cells or microscopic infection so best not to chance it and do the hard time.

All the best,

John
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