Major Blow!!

1 minute read time.

FormerMember

4 Mar 2013

OK, had tonsil (primary tumour site" and a "safe margin" removed about 10 days ago, since that time have been in constant pain except when I swallow; then it really bloody hurts!!

Before I had it done, teh Surgeon said he was "confident" that he could get it all out and that would just leaeve the secondaries in the nexk lymph nodes to be dealt with by chemoRT - great I am all for that - keeping the saliva glands and being able to swallow has always been the main thing for me, I would not want to go on if I had to reply on PEG indefinitely.

So, the day after the operation he comes round to the bed and tells me that he has examined the sample he took out and as there are no cancel cells at the margins he can confirm that he has got it all out - absolutely brilliant!!! At this point I am starting to feel incredibly fortunate in that apart from the horrors of treatment, I could actually make a full recovery from this, so next step is to get the chemoRT started.

I have a meeting wiht the chemoRT Consultant during which he drops the bombshell news that he has examined the sample and THERE ARE cancer cells at the margins; I will need "high dose" RT treatment in this area which (in his words) will kill off the saliva glands one side at a minimum and require me to learn to swallow again - worst still, "social eating will probably not be an option".

I am seeing the f*cking idiot surgeon this Friday, if anyone reads of an assault in Torbay Hospital on Mr., Hickey in the weekend press you can safely surmise that he didn't have satisfactory answers as to why he a) told me he could do it, and b) told me afterwards that he HAD done it.

The only bright side to all this is that the chump was pushing me to have a full neck dissection at the same time, I refused thank God - he would have probably done the wrong side!!!

Be in touch,

Colin

FormerMember over 11 years ago

Oh Colin .... I am so sorry to read this, what can I say ? Is there any possibilty of seeing another Consultant for a second opinion at all ? I had the extensive surgery ( with bilateral neck dissection ) but still had to have the radiotherapy to make sure that any stray cancer cells were destroyed .... they can be minute and won't necessarily show up even on a scan.

I had the ' ordinary ' linear accelerator external beam RT, but there are better methods of delivering the radiation than this one which are more precise in targetting the area needing treatment. So I would look into that as the damage to healthy cells is much reduced. On saying that, I reckon I ' got away ' with it somewhat .... my saliva glands are damaged, but to a point they have recovered a little and I cope with it okay. My swallow hasn't been affected .... it was temporarily difficult after my surgery, but is okay now.

My main problem stems from the burns to my tongue, but I was unlucky in getting a particularly bad reaction to the radiation .... bear in mind no one is the same and many get through it without too many problems. Eating out for me is ' out ' as I am very self concious now due to my soft diet - consequences of the surgery / nerve damage and such like. But I'll have a wee dram if we are out on the rare social occasion .... it's the price of success in a strange way and I've got used to it all now.

So it can still be got through, even though there may be a price to pay .... but I know which I would choose. Life !

Wish I could help more, Colin .... take care.

Joycee x
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FormerMember over 11 years ago

Colin Sorry cant imagine what your going through must be hell,Really hope things improve very soon for you.my wife has pancreas cancer shes in lot of pain in her back all the time lost lots of weight & just had op for bad appendix home today.Been told starting treatment in a week to 10 days chemo depends on if well from this op.Hang in there Colin
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FormerMember over 11 years ago

Hi colin my husband is having n op on thurs day neck disect we are worried he not be able to eat as they may take the whole tounge I cannot find any information about if they do that will he ever be able to talk or eat thanks from amanda
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FormerMember over 11 years ago

Hello Amanda .... I am sorry that your husband is also facing surgery so for help / support you should join the Head and Neck Cancer group here on the site. We are a friendly lot and try to be there for each other .... so you don't need to feel alone in this.

Joycee x
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