Hello Phil 

Phil I had the same cancer I finished my treatment almost a year ago on 17th May . Dry mouth is the Worst for me even now ( sorry ) I find the best thing and as much as I hate it is chewing gum , not any gum bubblemint ! I find the others too strong . I also use xylamelts at night they help you can get them online . I also have problems with my tongue so I have Gabapentin ( nerve pills ) prescribed for nerve damage they help .  I still find eating tricky as taste is off and also I still have trouble swallowing but as my throat muscles get stronger this is becoming a little easier . It's such early days for you hopefully when you are a year down the line things will be better If didnt have the dry mouth things would be easier that's for sure . Worse at night for me prob because I can't chew the gum . Hope you are doing ok it's such a brutal treatment I hated every moment of it . Ginny x x  Oh the mucus for me was temporary awful but went as quick as it came & this mucus can make you feel sick especially if you had a PEG like we both have had . X 

also you are eating bread ! I have only just started back on bread so you are doing so well . Peanut butter is my go to protein in a shake ! I have a jar a week yikes ! X

 BUT DRY MOUTH IS IMPROVING ! It was way worse than it is now and I needed constant sips of water . X x 

Hello Ginny

Hoping you still look at these posts, and you are well.  I'm waiting MRI results but I suspect I have HPV base of tongue cancer (side of tongue, at back).  I have to pull my tongue out to the side to see the area in question. I have a feeling they wont do surgery.  It's been growing I imagine for nearly a year. My symptoms were all in my neck. Pain but no lumps.  Wasted 6 months being sent to physiotherapists by my doctor.  How does it work if you don't have surgery? Can chemo and radiation cure it.  Or keep it under control? I'm 61, never been ill, worked full time.  Don't know how I'll remain positive. I feel like I'm about to jump off a cliff. I've done loads of research and as yet don't know how bad it is but trying to prepare myself.  Not having surgery sounds like a much better option if it works.  

Diane

Hi Diane

I hope you do not mind me replying. I was diagnosed with Tongue Based Cancer in October of 2020. It had also spread to right hand side lymph nodes. The cancer HPV and had been growing for probably a year. The tumour was quite large under my tongue,  I was very fit at the time aged 56 when diagnosed, never been ill.

My treatment was 6weeks Chemo and Radiotherpahy. I had Radiotherpahy Mon to Friday with a weaker dose of Chemo each Monday. I am now just over 12 months into remission and yes still  side effects with dry mouth and some food items taste unpleasant, but I can still enjoy various foods, and enjoy life to the full, in fact it has totally changed my outlook on life, what is important and no sign of the cancer.

Please do not give up, if you do get advised to have this treatment, which I thought was fairly standard for this type of cancer. I know another person who had this same type of cancer, same treatment and he helped me through my treatment and he was over 5 years in remission.

Everyone responds differently to this treament, but it does work. If you need any advice once you get your diagnosis, if it is the same treatment ,then I am willing to share my experiences, each will be unique to the individual, so I can only share what happened to me through treatment, how I coped and after. Of course I hope the diagnosis is something else and it is never easy waiting for this. 

Thanks

Phil

Hi Phil

Thank you so much for replying.  It's made me quite emotional and happy.  Trying to tell my friends what I believe I have is so difficult.  It's so unbelievable that they all think I'm making it up and need therapy. 

Could you feel the tumour?  I can wiggle my tongue fine and it feels normal.  Just have these raised bumps, papillae, on the side that get a bit sore now and then, and when I swallow saliva I feel a little discomfort on the back of my tongue (I think). It's sometimes difficult to pinpoint the discomfort.  As for my neck, that's been hurting since last Spring so goodness knows what's going on in there.

Were you offered surgery?

Diane

Hi Diane

I was the fittest I had ever been, and so I felt great, I just had some trouble swallowing at first not much just bread got a bit stuck in Septemner 2019 I remember it well as I was eating a sandwich and stayed that way, then in April/May started to get worse with swalloiwng, so I got checked out with a tube down stomach in June/July and they said all fine, gave me some tablets to help, even though not showing any issues, just a bit of imflammation in the stomach. I should have had an immediate folow up with an ENT specialist which I finally did end September and immediately he said got cancer, and he felt a lump on my neck which I had not noticed. I then had all the tests to confirm. That was probaly the worst part. They said no point doing surgery as would still have to do the Chemo and Radiotherpahy. I think 6 weeks is the maximum they do as that should be enough time to kill of the tumour, they work it all out based on size of the tumour, so could be less than 6 weeks.

From what I know and I am not a Doctor,if diagnosis is same as mine then you will probably be offered same treatment, I think that is the standard treatment as they want to kill off any cancer cells that may be lurking, so I had radiotheprahy which also targetted the left side, even though nothing showing that side they didnt want to take any chances. 

I know it is easy for me to say this, but at the time of diagnosis I only had one thought in my head, this cancer is going and thats it. Like you I worried myself sick waiting for the diagnosis and googling everything. As soon as I got my diagnosis, and treatment plan,  (it  was almost a relief to at least be told what it was ) through treatment and recovery I avoided googling or looking up anything. I just followed everything I was told to do and asked the specialists treating me if I had any concerns. 

Phil 

Hi Diane

I was the fittest I had ever been, and so I felt great, I just had some trouble swallowing at first not much just bread got a bit stuck in Septemner 2019 I remember it well as I was eating a sandwich and stayed that way, then in April/May started to get worse with swalloiwng, so I got checked out with a tube down stomach in June/July and they said all fine, gave me some tablets to help, even though not showing any issues, just a bit of imflammation in the stomach. I should have had an immediate folow up with an ENT specialist which I finally did end September and immediately he said got cancer, and he felt a lump on my neck which I had not noticed. I then had all the tests to confirm. That was probaly the worst part. They said no point doing surgery as would still have to do the Chemo and Radiotherpahy. I think 6 weeks is the maximum they do as that should be enough time to kill of the tumour, they work it all out based on size of the tumour, so could be less than 6 weeks.

From what I know and I am not a Doctor,if diagnosis is same as mine then you will probably be offered same treatment, I think that is the standard treatment as they want to kill off any cancer cells that may be lurking, so I had radiotheprahy which also targetted the left side, even though nothing showing that side they didnt want to take any chances. 

I know it is easy for me to say this, but at the time of diagnosis I only had one thought in my head, this cancer is going and thats it. Like you I worried myself sick waiting for the diagnosis and googling everything. As soon as I got my diagnosis, and treatment plan,  (it  was almost a relief to at least be told what it was ) through treatment and recovery I avoided googling or looking up anything. I just followed everything I was told to do and asked the specialists treating me if I had any concerns. 

Phil 

Hi Phil

Just need to communicate with someone and you're the one.  Still waiting for results for 17th Jan.  Had a letter to say I have a telephone appt on 9 Feb.  Feeling like I'll probably die of heart failure before then.  Tried to contact the ENT consultant who arranged the MRI yesterday.  Begged his secretary to ask him to give me some idea what's going on.  He knows how anxious I am.  I've heard nothing so taking that as a bad sign.  If it is my tongue, he didn't see it when he examined me (twice).

Really worry about how my glands are reacting.  Twice, I've had horrible tingling all around my neck during the night that goes up the back of my head.  Of course, I take this as a sign it's going to my brain. Also, a few short dull aches in ribs. Lungs???  I can't seem to find anyone who has had tongue cancer that has metastasised.  

I'll be taking beta blockers and diazepam when I get the phone call.

How are you doing?

Diane

Hi Diane

I am fine, I know how hard the wait is and not easy, however try not to 2nd guess yourself.  The body can do strange things when under pressure and stress. Mine did, every thought was around what this was and my body reacted to the stress of that situation. I was like a zombie, I was doing work calls and at the end of an hour call I could not remember what we had been talking about. They probably will not tell you anything over the phone regardless, will wait and tell you on your appointment, that is probably the standard process.

They will be used to people being anxious, they just follow the process and system.

Whatever I say or anyone else does, you will naturally worry until the appointment on 9th Feb.

Phil

Hi Phil

Going from feeling perfectly normal to sheer terror.  My poor partner is taking the brunt of it all.  Lost my beta blockers this morning.  Must have thrown a full packet away by mistake so major panic attack. Kind Doctor at our local minor injury unit agreed to give me a prescription to get me through the weekend. I think she made a mistake because the pharmacist has given me bucket loads.

I have a question regarding radiotherapy.  Does the beam work from outside or does it sometimes go in through your mouth?  Did your skin burn badly over a large area? It looks like a massive piece of machinery.   And do you go home after each session?  And did you have a PEG fitted?  I'm just trying to get myself prepared.  Feeling like I have a lump in my throat tonight.  I've felt that before and it sometimes goes away. Surely it hasn't grown into my trachea. Oh gawd.

Had a trial run of Diazepam yesterday to see if it makes me calm enough for the phone call.  No where near.  Going to have to add to the cocktail.  My two sisters are coming over.  They are so convinced that I have extreme health anxiety that they have gone to great lengths to organise a therapist for me after Wednesday.  I've told them all my symptoms and they're just not having it.  In fact,I actually think it's going to hit them harder than me.  I know all I'll need is a tiny bit of positivity from the consultant and I'll build on that.  I've read so many encouraging things about our amazing oncologists and the current technology and treatment.

Off to eat some more.  Trying to fatten up.  Not easy. Grab handfuls of nuts, cake, chocolate every time I pass the kitchen.

I'll let you know after my call if that's ok with you.

All the best

Diane

Hi Diane

i understand how worried you are and the stress this places on anyone.

Firstly it might be something else, but Radiotheraphy lasts about 15mins each day. You don't feel anything other than a bit of warmth in the actual process .

You  special creams to help the skin. My skin stayed ok, throughout, partly because I did everything I was asked around skincare. 

Generally with this treatment as standard you get a Foodpeg fitted. Again no one person is the same in terms of how the mouth/throat reacts to the treatment. I relied on the peg totally after about 3.5 weeks, the other person I know didn't need to use it until his 5th week.

Keep me updated and depending on the diagnosis, then let me know and you can call me

You get a mask fitted to your face, then when you have the Radiotheraphy, you put  this on and they fit it to pegs the side of the machine. It is tight but has to be, however if you lose too much weight then through treatment you will need to have another mask fitted.

I was very toned and fit at the time, around 61kg, I am only about 5ft 5. I kept my weight stable until about week 5, then it started to drop, I ended up at around 57kg.

Thanks

Phil 

Hello Phil

I wanted to tell you my good news.  I can hardly believe it.  My consultant phoned this morning to tell me that there is no cancer.  I have some nodules on my Thyroid that look innocent.  I've just spent 10 horrendous months absolutely convinced that I had cancer.  All the symptoms fitted.  I had even worked out that it had become advanced.  I can't quite believe what the mind can do to the body.  I've had real symptoms.  I'm going to take a while to process what I've been through and I will probably get some professional help.    I've learnt so much about the disease and spoken to some amazing inspirational people.  

Thank you from the bottom of my heart for your kind words and helpful information.  I wish you all the best in life.  

Much gratitude

Diane