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Rare Tongue Cancer

9 Sep 2021 23:30

Hi just got the news, I have a very rare tumour at the very back of my tongue that's not operable due to its location. I'm waiting on MRI and PET Scan appointments. Radiotherapy and maybe chemotherapy has been mentioned. Has anyone this rare tongue cancer......

Rare Tongue Cancer

11 Sep 2021 22:35 in response to Mary5610

Hello Mary5610 and a warm welcome to our forum! 

I am sorry to hear that this rare tumour at the very back of your tongue is not operable due to its location. I hope that the MRI and PET scans will shed some light on what treatment options will be available to you. 

Our information on tongue cancer will I hope be helpful to you and answer questions you may have on tongue cancer and if there is anything you'd like to discuss further with one of our nurses, feel free to give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

You've come to the right place to meet others who've been affected by tongue cancer and there are countless threads on the forum on this subject. If you just type the keywords 'tongue cancer' in our search forum function which is located on the blue banner at the top, you will be able to see past threads from members who have had a similar diagnosis and feel free to respond to any you feel you would like to connect with. For example, @Purple77 ‍ posted on her thread a couple of months ago that her mother in law had been diagnosed with tongue cancer so it might be a good person for you to talk to.

I hope you will hear from others on this forum who have had a similar diagnosis and that they will come and share their story with you. 

Best wishes, 

Lucie, Cancer Chat Moderator

Rare Tongue Cancer

11 Sep 2021 23:07 in response to Mary5610

Hi Mary sorry you've found yourself on here. I had a rare tonsillar cancer h p v positive (16) with several affected lymph nodes. I wasn't operated in as one of lymph nodes was too close to spinal cord. I had 35 radiotherapy snd 2 chemo sessions. I am now 3 years post radiotherapy and living my life. I was one if the 3% female with what is typically a male cancer. Don't stress radiotherapy snd chemo is hard but I was 61 and I did if. I have  a blog  which shows what I did. www.radioactiveraz.Wordpress.com

Keep off dr google please that will scare you more 

Rare Tongue Cancer

14 Sep 2021 19:54 in response to Mary5610

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

 

 

Rare Tongue Cancer

14 Sep 2021 21:16 in response to RadioactiveRaz

Hi, thank you for your reply. I have taken a look at your blog.  It was a very interesting read. Thank you for sharing.  The Radiotherapy looked very severe, well done to you for getting through it.  Is there any moisturizer that I can be putting on to help to build up my skin?

 

Rare Tongue Cancer

14 Sep 2021 21:28 in response to Mary5610

Hi thank you for reading my blog. I used e 45 cream U.K. tk treatment starting then I only used what the team gave me. Very few burn as badly as I did Larry my big lymph node was very close tj surfsce so was always going to burn it's fine now I haven't had any issues any questions just ask will try to help you.  
hazel 

Rare Tongue Cancer

14 Sep 2021 21:32 in response to watsons

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 

 

Rare Tongue Cancer

14 Sep 2021 21:36 in response to watsons

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.

 

Rare Tongue Cancer

14 Sep 2021 21:42 in response to RadioactiveRaz

Thank you Hazel.  How did u find wearing the mask for Radiotherapy....got fitted today,

Rare Tongue Cancer

14 Sep 2021 21:58 in response to Mary5610

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

Rare Tongue Cancer

14 Sep 2021 22:09 in response to RadioactiveRaz

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

 

Rare Tongue Cancer

14 Sep 2021 22:21 in response to Mary5610

Hi Mary. Quite early in in  diagnosis I took the decision that this wasn't going to best me. The mask was my defender I gave her a name snd every session told her I named her yep I did lol. Told her it was going to hurt her more than me and she was going to save my life which it did. I was fine I composed myself walked in with head head high and concentrated in my breathing and took my head in a bike ride or a walk I took my own music in. Before it started at home I used to our in bed visualise my walk set the timer for 12 mins and I never got to end of walk or bike ride. 12  mins most days nsybe 15 if scsn was being done. You can do it I did it. 
hazel 

Rare Tongue Cancer

14 Sep 2021 22:32 in response to watsons

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

Rare Tongue Cancer

15 Sep 2021 00:28 in response to RadioactiveRaz

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

 

 

Rare Tongue Cancer

15 Sep 2021 01:06 in response to RadioactiveRaz

Thanks so much for the encouragement Hazel.