I know how you are feeling.  I will be having a throat biospy in the coming weeks.  I was told my appt could take up to 6 week to arrive which doesnt bear thiniking about.  Every moment of the day I am lost in thought of what may lie ahead.  I feel ike I have been carved out inside... hollow  , numb and unable to communicate with others.,, people speak to me and I am not even aware,  I am so closed up inside my own head.. 

Sleeping is so hard.  I did actually download an app for mindful meditation and relaxing, which I  must admit , it did acutally distract me and send me to a better more relaxed mindset and I fell asleep to it .  Annoyingly it is only free for 28 days so looks like I may need to invest for the long time frame I know is ahead .. if my biospy takes 6 weeks and my results 2 weeks I have another 2 months of this . :neutral:

Oh my that is such a long wait. Hope you get it done sooner, it is so difficult when they find something and I feel it's the not knowing and the wait after biopsy for results is the worst, I agree you cant function or turn off no matter how much you try. I have everything crossed for you that it is quick, good news and you have a speedy recovery x 

Morning Al and Sue 

Hows things? any updates? .  I was back at  ENT yesterday. I was told last week to just turn up but that did not sit well with me so I emailed my CNS nurse and she told me to arrive at 10am.. well come 11:30 I  still hadnt been seen , asked what was going on as so many were just arriving and going in ahead of me .. I was then told I was next, however another 5 still went in ahead of me, I was finally seen at 12 noon only to be told my Biospy final result was still not back.. I could have cried afer waiting for 2hrs 15 minutes .  So,  I had a bit of a whinge that since last weeks appt , I had no call for PET scan, no maxfax appt for teeth, not appt for mask etc etc.. so , CNS nurse said she would sort Maxfax whilst I was in and she did manage to get me seen almost immediately , which made my day a little bit more worthwhile .  

Was told by Dentist two teeth would not survive treatment and needed removing both old filled teeth that were more filling than tooth , so she got that booked for next day (today).. I am just now home , less two teeth , with a very numb mouth, one tooth was a ***** to remove.  Now told to stick to liquid food today, haha  , I only started eating solids again end of last week so I'm back to soup. I have two stitches in my mouth (from the ***** of a tooth) , will they stay put I wonder or make a sharp exit.  Hey ho! 

I am now told to go back to ENT next Tuesday again (3rd time lucky)  with no set time on the hope the biopsy is back.. it will be 5 weeks past biopsy by this time.  At present it is being diagnosed as Squamous cell cancer to my soft palate with  6 weeks radiotherapy and 2 Chemo required .. if biopsy shows deeper tissue then that will change and surgey will have to take place..

I did my MRSA swab ready for peg surgery whilst in yesterday too .. 

So,  my treatments cogs are a little jammed at the moment .. but I have ticked the teeth issue off my to be done list  .. lets hope I dont feel like I  have been hit by  Will Smith when my numbness wears off  (lol)..

Love to both and anyone else who wants to join in !

Jo

x  

Hi Jo, 

sorry to hear about your diagnosis, I unfortunately got mine yesterday too, and I have been diagnosed with a rare salivary gland cancer :( in which they hadn't really heard off. 
i felt like I had been hit by a truck, I was like I'm 29 years old this can't be happening :( 

the next steps for me are MRI , chest x-ray and the sit with the MDT team next week. 
 

X

Hi Jo and Sue,

Glad to hear you have got things moving Jo, if all be it a bit slowly, and good news that it was only 2 teeth that had to be removed (remember how stressed I was that I would lose teeth during the biopsy?.....I dodged a bullet there!) You sound much more resolved now about you upcoming treatment. 2 hours wait!......grrrrrrrrrrrr......they have no idea how stressful waiting is!.....having teeth out is my specialty!....for some reason I have hardly any left on my top row but all of them on my bottom row....I once joked with my dentist that I must have Aliens blood for saliva.

I had my PET scan last night and it was a bit of a doddle tbh (I actually drifted off under the scanner :laugh:). For some reason I started to panic when he was puttting the cannula in.....think it was cos he took about 5 minutes to do it....I still can't watch the needle going in but I'm fine once its in. It was funny being escorted to a special toilet because I was radioactive, I joked about being a 'Ready Brek' kid but he was too young to get it :laugh:

Anyways he reckons my surgeon should have my results (along with the lymph and tongue biopsy results) for his team meeting on Thursday morn when he will discuss with his collegues the way forward for me so I'm expecting a call either Thursday or Friday.....stress levels are up hoping that nothing else appeared on the PET scan but no matter what I will beat it.

All being well I should know by the end of next week exactly where I'm at and what treatment I will need.

The thought of having a peg fitted fills me with terror even tho I know its not a bad procedure and I'm hoping to convince my surgeon I don't need one........please keep me updated on how you get on with that.

So glad you have picked yourself up from the devastating news last week....humour is my way of keeping sane going thru all this.

Keep ticking those boxes

Sue, how are you doing?

Al

x

Hi,

so sorry to hear about your diagnosis...as you can see we are in a similar situation to you, just a few weeks ahead.

Can totally relate to how you are feeling.....I felt like my world had ended when I found out and cried every day for 2 weeks. Now that I am in the system and have had most of the tests and biopsies done I am feeling much more positive.

From what I have read and from people I have spoken to who have gone thru this it is totally curable.....thats what I keep telling myself over and over and over again.

Its been so helpful talking to Jo and Sue on this forum and their encouragement is helping me get thru what is the worst time in my life.

Stay strong, stay positive and keep telling yourself you will win.

Al

Thank you, and you too too. I'm still new to this chat page I keep trying to read peoples stories. 
 

I'm hoping to be able to find someone to talk to too.. so hopefully I could join in with your 3's talks. 
 

I'm sorry to read your diagnosis and story :(, how long after your results did you start your treatment? 

thanks 

S 

Hi There 

I am so sorry to hear this .  Words can't really describe the feelings when your are diagnosed and the waiting period for diagnosis is sheer hell, I know.  I was kind of prepared for my outcome as I googled my symptoms for hours on end and always came back to one answer but even when it is officially given to you,  that state of numbness is beyond description.  I have cired , lots,  over the past week.  Silly little things upset me , Mothers Day was one.  The only thing I cling to is it is treatable but the treatement can be brutal.  Like Alan, I  personally know several survivors of oral cancer.. 

I see someone diagnosed with a rare nasal cancer on the Macmillan site a short while back and they were very worried and one of the chaps there said that just because it is rare does not mean it is not treatable, but simply not heard about as much as Breast cancer or prostate cancer, etc  and this is very true.  Head, Neck and Throat cancers have very good outomes and most treatments are the same for this area.

You are very welcome to stay here on this chat. May I also suggest joining the Head , Neck and Throat group on Macmillan site  , you may even find someone who is also going through or has been through  this cancer on there  .. I am there too, so feel free to find me there, my user name is JustJo and I am in the group I  mentioned.   They are a lovely bunch .. and the ones who are now on the otherside (post treament)  provide so much support and advice and will be with you every step of the way . 

x

Jo 

Thanks Jo, I have added myself to that group. And just by a search found a lot of forums. 
i hugged my 6 years old son so much last night and just didn't want to let him go. Made the desicion not to let him know until we know more of what the treatment is going to be. So far more surgery has been discussed. 
i have never been around cancer, the last person I knew was my grandad and I was a child then. So I'm hoping these forums and threads will help. 
i haven't cried yet, well I had a couple of tears when I rang my partner as my dad came with me for the appointment other than that I feel like a bit of a monster for not crying when I think I should be. 

thanks 

S x

Hi Al ,

You are as upbeat as ever.. love it .. lol

Yes, PET scan is not a worry at all , how long did it take out of interest.  I heard it takes longer than a MRI as the substance they put in you has to travel around your bod for a while.. perhaps iI can speed that up with a few star jumps lol.. Did you glow in the dark too? lol

Peg , meh ,, I  read that it can be done with or without sedation.. I will probably say bring on the drugs and then they say you wont remember a thing, although still concious  , I did hear that possibly an overnight stay to be trained on maintaining it and using it , but I will tackle that as and when that arrives.  Tbh, I would prob go for it Al if I were you.  I have a friends on Macmillan site (you should join there too) who are so glad they had one fitted as eating and drinking and taking meds will be hard going around week three of therapy, these peeps also treated for tongue cancer.. or you could speak about having a nasal gastric tube instead? so up the nose and into the tum, again just so you can keep up with food , fluid, meds and treament moving on .  

At this rate you will be before me Al , still not even had my PET scan .. 

Re the teeth removal, I was told that no dentist treatment should be done for the first 2 years after therapy so they remove any that look like they could end up needing work on in that time frame? have you been offered a scan to check your teeth (lol at the Alien blood btw). I was given a new toothpaste too, special high flouride and told I would now be using that forever and it was now on repeat prescription for me and flouride mouthwash. again to keep teeth extra strong and try and prevent any chance of  dental treatment  later on .. seems like they really dont want you in a dentist chair after radiotherapy.  (perhaps ask your team about this to be safe) .

Is that this Thurs / Fri for your results?.. yep , I can imagine anxiety creeping in, i have this phase still going on too... (uff) 

Jo

x 

( I hope Sue is okay , but on the upside, her results were very promising , so she may no longer need to be here ,and rightly so )

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

Omg no totally agree we had 2 years of not exactly been able to go away! I'd be same as you like no way am I cancelling. 
 

I'll keep everything cross that is hasnt spread, Infact I'll keep everything crossed that it's not actually the C! I hope you manage to get some sleep before your appt tomorrow. It's such a hard time for everyone but looking back on some of these comments and stuff I think it's nice to be able to talk with someone who knows what we're thinking / going through. 

the macmillan nurse and the consultant were pretty confident that mine would be surgery and a bit of radiotherapy, but I'm just petrified of the MRI results. I kind of wish I had had them first to know what I was working with but because she didn't know what the lump was she just cut it out but because she didn't know it was cancer when it's gone under pathology the lump was edge to edge cancerous so they think they will need to take out some more tissue. 
 

Thanks S x 

Omg no totally agree we had 2 years of not exactly been able to go away! I'd be same as you like no way am I cancelling. 
 

I'll keep everything cross that is hasnt spread, Infact I'll keep everything crossed that it's not actually the C! I hope you manage to get some sleep before your appt tomorrow. It's such a hard time for everyone but looking back on some of these comments and stuff I think it's nice to be able to talk with someone who knows what we're thinking / going through. 

the macmillan nurse and the consultant were pretty confident that mine would be surgery and a bit of radiotherapy, but I'm just petrified of the MRI results. I kind of wish I had had them first to know what I was working with but because she didn't know what the lump was she just cut it out but because she didn't know it was cancer when it's gone under pathology the lump was edge to edge cancerous so they think they will need to take out some more tissue. 
 

Thanks S 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