Hi Mary,

After a visit 2 weeks ago to the ENT department at my local hospital I was also  diagnosed with a cancer behind the tongue, I've just been informed that I'm going for  MRI and CT scans next week but not sure what happens after that, I would presume a biopsy is next but I've not had any notification of when that might be or what the treatment options are, I have heard though that biopsy results are taking up to 5 weeks to come back, hopefully this might be an exaggeration, with luck I'll get some news soon.

I'll keep you updated on my progress but I do hope all goes well with you.

Best wishes

Peter

Hi Mary,

After a visit 2 weeks ago to the ENT department at my local hospital I was also  diagnosed with a cancer behind the tongue, I've just been informed that I'm going for  MRI and CT scans next week but not sure what happens after that, I would presume a biopsy is next but I've not had any notification of when that might be or what the treatment options are, I have heard though that biopsy results are taking up to 5 weeks to come back, hopefully this might be an exaggeration, with luck I'll get some news soon.

I'll keep you updated on my progress but I do hope all goes well with you.

Best wishes

Peter

Hi sorry you've found yourself here but if  I can help I will. Yes ct scan mri then biopsy.  Cancer results are reviewed  at m d t meeting once a week so  usually it's a 2 week wait then you see oncologist to discuss next stage. In my case I was 63 days from being put on cancer pathway ti treatment starting seems a long tkne but there's a lot of behind the scenes planning. . My blog is www.radioactiveraz.Wordpress.com it will give you an idea of what to expect. If I j can do it anyone can 

Hazel 

Hi Peter,

I started out my journey by going to my GP. He referred me to an ENT and the ENT sent me for a CT straight away.  From there I got a biopsy and met the consultant with the results. She gave me the news that I have a tumour, a very very rare tumour in the tongue. The tongue also produces saliva and it's my understanding it's there the tumour is, at the very back.

Also I forgot to mention I got teeth removed at the time of the biopsy. They were my implants.

While waiting to for my scans I have been told to make appointment with my dentist to do a check on the rest of my teeth.  They are all in good and got a cert to give to my cancer team.

I have just done my MRI with dye. I didnt mind the noice of the MRI machine but they wanted me to wear a shield over my face which I couldnt bare. The lady said I didnt have to wear but it gives a better picture on the scan.

Also this week I was fitted for a mask for Radiotherapy.  It's a mesh like thing over ur face,  I hope I will be able for this.  

I have been given a start date for my Radiotherapy but no time. It will be the end of this month.

I will keep ye posted.

Look forward in hearing anynews anyone has.

Thanks Mary.

Hi Mary,

Thank you for updating me on your journey so far, things seem to have moved quite quickly for you, I've had the symptoms since July so I think mine will now be quite advanced which is worry to me and I've now developed a lump in my neck, so I'm both anxious and keen to start treatment as soon as possible.

I don't think I'll be to keen on the mask either, but It looks like both of us might be having similar treatment at about the same time, I will certainly keep you updated on my progress.

Best wishes

Peter

Hi Hazel

Thank you giving a breakdown of the time scale on how things progress, I have read your blog and it has been an inspirational read and your right about Google, it does send you into despair and I now avoid it as much as I can!

I think the main worry most of people have when newly diagnosed is the side effects of the forthcoming treatment, which after reading many of the blogs seems to be quite uncomfortable, I just hope being an older man of 69 that I have the courage and stamina to get through it.

Best wishes.

Peter

Hi Peter thank you for reading my blog glad d you found it helpful. I did it originally just for me snd our family but just it's reached over 50,000 people scary fir a little lass from Yorkshire. Best advise is remember your won't get all the side effects the most common is dry mouth it's not pleasant  but it doesn't last forever. I have limited saliva but it's still improving now I am at approx 95 % during day  What you need to remember head and neck cancers are eminently curable ok treatment is hard but outcome is good. 
don't stress about the lump in your neck it's your lymph nodes doing what they should do. When I think about it my lump  was there in February 2018 I just ignored it whilst in  Spain and home jn May then treatment started mid July by then I had several more nodes that were affected. I know ladies in their mid 70 s who have successfully completed treatment and recover so at 69 you are a spring chicken. If I can help just ask. 
dovyoy know your h p v status ? It's a question to ask along with your T n m status I was T2N2NM tumour size 2-4 cm nodes 2 nodes later 3 no metastasis. 
Hazel x

Hi Hazel,

Thank you for the reassuring words and side effects information, your blog is an essential read for all of us afflicated with this awful cancer.

I've not had a biopsy yet, in fact I've had no communication from my doctor at all except a letter from the hospital saying I've to go for a CT scan next week, so not sure what my status is as yet, what the ENT doctor did show me however was a photo of the cancer at the base of my tongue taken when they put the camera down my nose, it's a picture I'll never forget!

Hopefully all the status details will come after the biopsy.

Best wishes

Peter

Well said Peter about Mary's Blog.

Hi Peter,

It's only this week, the ball has got rolling for me (which has made me very nervous and hope to have the will power to carry out this) as I have been waiting for MRI scan for a couple of weeks. Just waiting on a PET scan. 

How are u with eating. I am taken Fortisip drinks and like the peach and mango, I can manage Salmon, pureed veg. and potatoe mash. I dont eat eggs or chicken. So I am very limited.  It takes me a very long time to eat but I'm in no rush. I have taken up deserts, cheesecake, custard, rice Pudding. To build up some weight. I am in around 10st. 

Chat again Soon.

Hi Mary,

Glad things are moving, I'm nervous about what's to come as well and I find sleeping at night quite difficult due to anxiety, but then I think let's get this over and done with so I can get my life back so that thought gives me the strength to carry on.

I find eating a bit difficult due to the pain in my throat and also swallowing can be awkward but if I take water I can get most foods down, but wine and chocolate for some reason hurt like hell when I swallow!

Although I've been eating regularly I've still lost a stone in under two months and the weight is still dropping off dramatically which is a worry to me.

It's ironic that earlier this year to try and lose weight I'd stopped eating all the bad foods like buns, chocolate and biscuits etc. Now I'm back to eating these foods again to try and gain weight, but to no avail!

Best wishes

Peter

Hi Peter sorry for delay we're just at Portsmouth waiting for ferry to Spain yes life does go on after this waft cancer. Just to give you some hope it will feel doom n gloom just now I know I've been there. The ct scsn will help pin point where to do the biopsy so don't worry it's a week trodden path. I know it seems slow but it's hiw the planning etc is. Like I've said I was 63 days from putting on pathway to treatment starting. If I can help I will. Thsnk you for kind words re blog. 
hazel