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

Hello, all. I'm sorry it's been so long since I last posted, I do think about this forum a surprising amount, I think it is great that it exists, and I want the people who offer support through it to know I appreciate them.

So, update... I asked all the questions, I had the surgery. It has gone very well, really. The graft is very successful - the rear part was good from the start, the front section was giving them some cause for concern at first as it was pale, but it caught up.

OK, I am having trouble eating (can't open my mouth much, am only confident to chew or swallow anything down the left-hand side of my mouth), I talk a bit funny and I tend to have a somewhat lopsided mouth, but I'm going to be having re-education, and all that I'm sure will improve.

I have a lovely nurse who visits me at home every day. The tracheotomy is probably totally closed, but although I have actually seen 3 nurses none of them is willing to say 'yes it's 100%'; I don't feel air through it, but I do still apply pressure there when I cough/sneeze or if I need to speak more loudly.

Well, I'll get that checked on Monday, too, as I am back to see my surgeon then, because there are concerns about a strange round lump that is gradually getting bigger and seeping on my wrist, where the donor graft was taken. All the rest of the graft area is healing well.

I also had a feeding-tube fitted while I was in there - this was not planned, they just sort of decided to, so I had a 2nd op., when I was just feeling strong after the first one. I have probs with the entry-point of my feeding tube being inflamed and a little infected, it is unpleasantly painful; this is not helped by the material used being antediluvian apparently, modern ones you just have a sort of button you wear, and you clip stuff on it; I have a clip with about a foot of tube hanging around, syringe into end of tube etc. You undo the clip to get to the actual entry point to clean it; and 'mobilise' the tube (which hurts, given the inflamation...). I say 'you' - I mean, at the moment, the nurse who visits. A point of concern is that they never did this at the hospital, so it's really not surprising that it's infected!!

But I shouldn't complain - they did an absolutely fantastic surgical job on the graft, and the neck dissection is virtually invisible, they followed my neck's natural lines (I have always had pronounced 'lines of Venus' on my neck, so I guess I'm lucky!), and even though at the moment I still have the stitches in, you really don't notice it.

I start radio therapy on the 28th. I'm not looking forward to it, but it does mean I will be able to sit at table with my family for Christmas and at least eat something - not sure how much, but I'm working on it! I'm sure they won't mind if I drool a bit

Hello Sian

Nice to see you back. Good luck with the radiotherapy.

Best wishes

Vinod

Hi Moptop

Yay! I'm very glad that your operation went well. You and your family certainl will have a lot to celebrate at Christmas

The scar from my dissection is virtually invisible, too. I think it helped that my parents were with me at the initial consult with my surgeon--the scar looks like a normal wrinkle. A word of warning: your neck might tend to swell now whenever you have a cold or other infection because lymph fluid isn't moving out of the area. It'll slowly reabsorb.

A suggestion for Christmas dinner: gravy is your friend. Almost anything you might have is easier to eat with gravy (except maybe dessert, but you never know). If anyone is upset by your drooling, just tell them you're REALLY REALLY hungry, and smack your lips at them.

I love it when we get good news on this site.


Julia

Hi,

Really good to hear from you and your progress, well done.

Enjoy Christmas and the festive season. Wishing you good luck with the radiotherapy.

Take care

Ken

Howdy Moptop
I loved your post. It sounds as though you are doing really well and your attitude is upbeat and matter of fact which I'm sure will get you through anything you face. Well done to you.
I'm glad you are going to be able to have Christmas with your family before you start your treatment. Make it a beautiful family time and don't forget to thank the cook/s for serving such drool-inducing food!
Enjoy.
Deborah

Hello Moptop. I just thought i'd share the same words of encouragement that you shared with me. I'm pleased for you that all is well so far. You seem to be taking it all in your stride. Good luck with the rest of your treatment and keep up the humour. After so much worry in the initial stages of Cancer and going into the unknown so to speak, it helps so much if you can look back on your bad luck without too much bitterness.
I am a trustee at The community Cancer Centre and using my experiences in a positive manner to help others with advice and support has also been a form of self help. when I see people come in through the door for the first time looking for emotional salvation and a shoulder to cry on, I can remember just how I felt when I walked in there for the first time. I was a physical and emotional wreck.
I hope that one day these people will also be able to give something back and continue the cycle. We exist purely for this purpose as a place of haven when there is nowhere to find understanding support on your discharge and completion of treatment. The pain lives on but we try to make it easier.
.....and not forgetting this forum of course. MCF is a valuble source of tips and information from people with all types of oral cancer who are always willing to offer help and support. It is by far the best support group on the internet for mouth related cancers.
Keep up the spirit down under there my friend and keep us posted.

stevieo.webs.com