Hi, I introduced myself recently. I have tonsil cancer, I can't tell you what stage it is, no-one has yet shared this info. with me. I'm in France and they are not so into open information sharing here, in some ways; very open in others. Anyway - I have started a blog, for anyone who feels like looking in; it's not ALL about cancer! I also discuss cats. But ok, it is pretty cancerish...

http://sians-public-blog.blogspot.com/

Anyway - I have to give background so I know some of this is duplicated from other postings. But I do have some questions, and you do need the info!

A brief excerpt from my most recent post, because this is the important bit for me right now: The scan results, translated, say, as best I can do - I'm not a specialist in medical French!

'Thickening of the tissue of the right pharyngal wall, centered around the tonsil area, spreading over approximately 44mm high by 24 mm end to end and 17mm wide, heterogenerously raised by contrast.

This lesion spreads from the bottom at the valécule (no translation, word does not appear in any dicco I can find), upwards to the free edge of the soft palate (I think) and forwards to the back part of the mobile tongue and on the tongue base.

It does not cross the median.

Presence of an enlarged subdigastric gland on the right, heterogenous, necrotic, measuring approximately 35mm high my 18mm on its small axis.

No other lymphatic gland abnormalities

No bone lesions'

I am assuming that the last two points are really good news; also, thoracic/abdominal/pelvic scan show no issues. I am very lucky.

But, my issue is: my first diagnosis, the ENT chap (not a cancer specialisat) shrugged off concerns about the growth on the base of the tongue, and the oncologist (radiologist) did not point out or discuss that the gland was necrotic and thus different. The radiologue said radio-ology only, 6 weeks or was it 7. This with erbitux to increase efficacity.

I have had a 2nd opinion from a high class specialist, I will give his name I trust that is not frowned upon, Dr Garrel, CHU Montpellier. He is an ENT surgical oncologist, and he and the department he belongs to are truly reknowned.

He proposed surgery immediately, and pointed out that since the gland was necrotic, it would not respond, or not much, to radio therapy. They reviewed the scan at their staff (multi-disciplinary) meeting yesterday, he phoned me today and confirmed, consensus was surgery first, radio after.

So, removal of right side of base of tongue, graft; removal of the tumour on the roof of the mouth and of course the tonsils and the gland.

He says that the tongue work/graft should not long term affect my swallowing; and that there will be only small incursion into the soft palate, so there is no reason I should have any more issues talking than I do now (my only issues are that I cannot talk for long, my throat tires, my voice goes, I tire).

I asked if it was possible to do a sort of half way house - remove the gland and tonsils, and a lesser amount of the rest of the tumorous growth; then zap more; because I understand this type of tumour reacts very well to zapping. He said yes, one could do that, but because of the thickness of the tumour, again, my survival is at stake and after radio therapy, if it failed (high or higher likelihood), operating would be much more complex and dangerous, and open to failure.

I have since learnt that erbitux is a 'blocker' (info from the Oral Councer Foundation, not a fly by night org - I think I can say that without breaking the rules); and that others with tonsil cancer are treated through radiotherapy alone.

So (a very long way to get to my question) - Should I try to get a third opinion, for consensus, and if so, do I try to get to a Paris specialist, or even get back to the UK? or - because I feel time is starting to press... do I go with the safer but more drastic operation path... also the more traditional, perhaps; is the erbitux/radio/growth-blocking path without prior surgery worth considering?

Hell... this is my life I'm talking about, and he was very clear about that this morning. Excuse me if I'm less than coherent. I had another question and I can't even remember what it is.

Oh yes! Comments, please, on experience and effects of similar surgery - the tongue part I know can cause swallowing issues, I'm not sure if that is permanent; and... the soft palate incursion, however small? that is also really scarey.

thanks anyone.

I can't make decisions for you, but can tell you that I am in remission for tonsil cancer (2 years) and I had one tonsil removed, radio and chemo. I was very lucky that it had not spread.

I'm sure somebody else knows more about these kinds of operation than me.

Chris

Hello Moptop

I feel your pain and confusion. I cannot give medical advice but say, ring your Doctor immediately, if necessary print out your post and show it to him/her. It will not do you any good worrying yourself like this. I am sure that the doctor will understand and do all he can to put your mind at ease.

Our heartfelt good wishes and support go out to you. xxxxxxx