Hi S,

I haven't actually started any treatment yet. My initial diagnosis was on 22nd Feb based on an MRI scan thats showed a mass at the back of my tongue....since then I have had a CT scan of my chest to check it hasn't spread to there (thank god it hasn't), a lymph node biopsy on one of the glands in my neck (still waiting for results of that) and a biopsy on my tongue just over a week ago (also waiting for those results) and I had a full body PET scan last night. Hopefully my surgeon will have all three results to discuss with his team tomorrow morning. Although cancer is not confirmed yet he was 99% sure from his experience that it is cancerous....I expect that to be confirmed next time I talk to him which will hopefully be early next week. Provided it hasn't spread his thoughts were that I would need 6 weeks of radiotherapy but he was very confident it is totally curable. In my mind I am telling myself that I will start treatment some time in mid to late April.....at least I hope so because I have 2 holidays planned for August and November and there is no way I am cancelling them! 

Al

Hi Jo,

Doh!.....looks like I will have to get the peg then...u have talked me in to it :angry::laugh:.

As I said to u before I have been so impressed with the speed at which the NHS has moved so far and really can't fault them. The PET scan was actually quicker than I had read....I had the dye injected and only had to wait about 30 mins to go under the scanner which lasted about 20 mins (it might have been 20 hours tho coz I dozed off :laugh:).

After my tongue bio, a week last Monday, surgeon said it would probably take at least a week to obtain results, so tomorrow basically. Him and his team meet every Thursday, so whatever my results at least I won't have to wait too long to find out.

I don't know about u but generally I feel ok?.....my throat is sore every day to some degree and my tongue feels like I have a cold sore where the mass is located which tingles all the time....I have managed to get my stress levels down somehow I think it was after I had the results of the chest scan I just felt so much more positive........it's strange, I don't feel like I have cancer and would have happily carried on oblivious and just assumed I have a chronic sore throat.

I hope u r right about Sue and she no longer needs this forum.

As for me you will have to put up with me for quite a while yet :wink:

Keep fighting the fight and drinking the wine!

Al

x

Sorry , just read this and you found the forums so ignore my message on macmillan ..

Dont beat yourself up on how you deal with this .. we are different and have different coping mechanisms .  I think I have experienced all emotions there are .. 

It is good that surgery initally seems to be on their list and who knows , many only ever have surgery , all cancer removed at that stage .. Keep us updated as you move forward .  

x

Dont worry too much about the MRI.  They will probably give you a contrast scan, where they put some form of dye / substance via intravenous , normally halfway through.  That simply highlights how big the area is that they need to focus on,  that will then help them with its removal via surgery.  So,  they  now know something is there that should'nt be and now they want to see how much.  

The machine is damn noisy and takes about 30 to 40 minutes.  They will give you ear plugs but its is still hella noisy.  Oh and I was offered a blanket , which I took them up on. Machine is quite cold and a little comfort  was nice , wear something warm just in case they don't offer you a blanket. 

x

i would ike to say I feel okay , but the disasterous biopsy left me in so much pain and it is still open even now, it feels like a constant reminder in my head.  If I were pain free it would be so much better to just get on with life for. a while before treatement starts and have days where the C word doesnt linger in my mind. That aside , if the biopsy site stitches had stayed put i would have just had the niggly sore throat that I had before .. which was much of nothing.  Amazing how a much of nothing , can be fa far  from nothing.  

The Dr I see yesterday had a look at my biopsy site and was like 'yikes that looks sore how are you coping'. she also got others to come have look, lol (lovely eh) i told her I pop pills as an when it flares up too bad .. she told me to take them 4 hourly no matter if i am in pain or not.  

Now of course I have another 2 wounds and more stitches in my mouth again. . So hopefully these heal quick and i can get back to my solid food asap .. 

Re Peg -  you're welcome,  ,you will thank me later .. plus I didnt want to go it alone on the peg thing lol .. 

Hi all,

just had a call from my surgeon to go see him at 2.15 this afternoon.....I panicked obviously cos of the speed of it but he did say it was to discuss the options they have for dealing with my tongue. He said he had seen the PET scan and didn't mention anything about it having spread so I think thats good news.

He also said that the scans and biopsies didn't didn't show up anything unexpected so I'm also guessing that it has spread to the lymph node they biopsied which he thought was the case.

He did say also if I had an "extra pair of ears" to come with me, that panicked me too in case he gives me really bad news but he said it wasn't a must and maybe its just in case I don't take everything in. Unfortuantely my daughter is at work and my girlfriend is in London so I will have to go it alone.

Watch this space I will report back later this afternoon.

take care all

Al

x

Hi Al

Wow , Your team are super quick and diligent.

Sounds like they  may have different yypes of treatment on offer for you so maybe they want you to choose , hence extra ears . Take a note pad and pen and jot things down .  My other half did all the jotting down for me , not that can understand what he's written.

Good luck and you will be in my thoughts

Jo

I'm back!!......

had a great consult with my surgeon who confirmed what I already knew, that I have cancer of the tongue and it has spread to one lymph node (possibly a couple of others too)..... Its the HPV type and I can't remember if he told what stage it was......I was just so happy to hear that the PET scan showed that it hasnt spread to any other parts of my body which means its totally curable!.....well it may have spread to a couple of others in my neck....

I have to have and x ray of my teeth next and an ultrasound of the left lymphs....if they are infected they will treat them at the same time as the right side.

He actually offered me surgery to remove the lump then 6 weeks radiotherapy with some chemo thrown in but followed it up by saying having the surgery doesn't mean it will be any more succesful than having just the radio and chemo.....no prizes for guessing which one I chose :laugh:.

I have to have a feeding peg fitted.....thanks Jo! :wink:

So all being well I should start my treatment in around 3/4 weeks time.....6 weeks of radio with 2 chemos........6 weeks recovery should be perfect timing for me to go away with my daughter to celebrate her 30th......thats my goal.

Also met with my Macmillan carers who will be supporting me thru all of this......lovely couple of people called Ian and Kas who told me I can call them anytime I want.

I went there today under no illusions of what I would hear thanks to my surgeon being up front with me from day one so I wasn't at all shocked when he told me....I thanked him for that.

I can't tell you all how relieved I am that it hasn't spread and I'm out for a meal tonight to celebrate.

Bring it on!

take care all

Al

xx

Hi all,

sorry I've been so quiet, my bowel disease has been evil to the point where my gp wanted to admit me but we agreed to try 2 lots of antibiotics together first thankfully they have started to work, as if I haven't got enough going on but at least it took my mind off my throat. Sorry to hear you got a positive result Al but now you know you can deal with it and if you're going to get it HPV is the one to get as it's curable. Glad you and jo are both staying positive, I'm gutted you both got the results you did. Still up in the air as to what is going on at this end roll on the 26th and hopefully get some results.

take care

huge hugs speak soon 

sue xxx