Hi Mary, I read your post with interest as I also have a rare situation with oropharynx (back of my tongue). I seem to be a little ahead of you, but it's hard to find people with this scenario. 
I had a lump in my neck and saw an ENT. I had my MRI and PET in Jun. I then had a fine needle biopsy on the neck lump which told the doctors I had cancer in the mouth somewhere due to the type of cells (SSC).  I had a general anaesthetic biopsy to look for the primary, which seemed be flagged (via PET) at the back of the tongue, however despite 20+ punch biopsies they couldn't find it. This is apparently rare. 
Then I had a neck dissection (do not google image this!) to remove my lymph nodes, where it was confirmed I was HPV+. It's also basaloid (aggressive) which is again rare. So I have a rare cancer, that they can't find which makes it rarer that's basaloid so even rarer!! I do not feel special!!!!!!
Now I'm on my fourth session of proton today (a type of radiotherapy) and feeling very alone (I had to travel for treatment and leave my husband and young children behind). The radiotherapy is just targeting where they think it's likely hiding. 
On the positive side, although we have these rare cancers, I've been told by multiple doctors that the prognosis is good - while it sucks it's happening to us all, we have every reason to be hopeful xx
Erica

Hi Erica, just wondering how are you getting on. You must be on your 4/5 week of treatment. I'm on my 3 week and find it very tiring. I had the speech therapist yesterday to practice mouth movements. She would like me to try some Mince Meat and Rice Pudding to see can I manage the small lumps. I'm not ready to try the Mince yet and she said that was ok.  Hope to hear how you are doing. Mary.

Hello Peter and everyone else here. 

Great to hear from you Peter. Christmas was lovely but was very challenging with food. Had the soup and mashed everything else but no Turkey or the lovely Ham....miss my big dinner, but great I was home.

Came a week later, we had New Years Day and I managed a small bits of chopped up turkey which is a great change from the steamed salmon!! So everyday/week makes a difference. 

The dietitian is happy with my process. I havent gained or lost weight so I am maintaining . Have to practice exercises for my speech. My speech is good, but feel like Donald Duck sometimes.  I'm out and about most days. We are having beautiful weather.

My mouth is very dry at night. I also have, not fully cleared, a coating on my tongue. Trying a few things to clear it.  It will take time. Drinking plenty of water is very good for me and find it helped me alot with saliva. 

I had a CT scan today and results are good, going in the right direction please God. Review again in a few months time, but didnt hear anything about PET Scan. 

Takecare Peter and All.

Mary 

Hello Peter

My name is Diane. I've been following your chats with Mary and Erica as it has given me some comfort. I think it's your smiling face that helps.  I'm waiting for MRI results that I had over a week ago, and trying somehow to prepare myself for what I think will be a cancer diagnosis, possibly back of tongue.  Is that the lingual tonsil?  I've been suffering with neck pain for months which the doctor thought needed physio. I realise now that the pain is my glands.  I have a little discomfort swallowing saliva, not food. 6 months down the line and my armpits are now reacting. It's all I've been thinking about for months and dreading the phone call from the doctor.  I too have a grown up daughter and son, and cannot imagine how I'll tell them.  The uncertainty is terrible.  Can I ask, did you suffer from a runny nose at all.  I've had this for months and have read elsewhere that this is a symptom.  Regards. Diane

Hello Diane,

So sorry to hear about the anxiety you must be going through, I know how you feel as I went through the same emotional rollercoaster myself.

I had no obvious symptoms as such and I don't remember having a runny nose, only a sore throat for over a month, but I thought it was my chronic rhinitis burning my throat which I've had for years, but one morning I noticed I had difficulty swallowing my vitamin tablets and a few days later my weight started to drop dramatically combined with hot sweats and swollen glands so I knew then it might be serious.

I phoned the doctor (no face to face due to covid) who was concerned and arranged for an ENT appointment, which took nearly three weeks, the consultant confirmed it was advanced back of the tounge cancer, it was a terrible shock as I'm in my sixties and was never a heavy smoker and gave up years ago!

It took another two months of MRI and CT scans and a biopsy for my treatment to start which was seven weeks of chemoradiotherapy, it was grim but bearable and I'm now four weeks post treatment.

I can't deny that telling my two grown up daughters was the worst moment of my life, especially as my eldest is a nurse and knew what was to come.

I wish I could be more helpful Diane, but hopefully your symptoms are not cancerous and my oncologist said that throat cancers are treatable and some can be cured which has given me hope for the future.

I do hope your MRI tests come back with nothing to be concerned about, the uncertainty must be terrible for you, but one thing I've learnt from this journey is to remain as positive and optimistic as possible.

I wish you all the best.

kind regards

Peter

Hello Mary,

Hope all is well with you Mary and my apologies for the delay in getting back to you.

I can't believe tomorrow is the 1st March already, it must be well over two months since the end of your treatment, it's now nearly 10 weeks since my treatment ended and there has been a few issues both physical and emotional but I'm remaining postive.

I do hope your side effects of the treatment have subsided, the dry mouth and tongue coating you last mentioned I would hope will improved by now and hopefully your weight will have gained a bit, I was so pleased to hear your CT scan result was good.

My voice like yours has now gone all Donald Duck as well, which surprised me as I've had no issues with my voice at all until two weeks ago when my throat around the larynx swelled up with a hard lump, making swallowing uncomfortable and causing my voice to sound hoarse, I was hoping the side effects of the radiotherapy would have subsided 10 weeks after the treatment but I still have a very dry mouth with no saliva plus I'm still unable to taste any food whatsoever, which I'm a bit disappointed about, although I'm eating fine, as long as I drink plenty water to help it go down plus I'm still taking the protein drinks, so my weight has stayed reasonably stable. 
I still have the RIG feeding tube which I've never used once in the five months I've had the damn thing! The doctor says it will stay in until she gets the results of my final scan on the 29th March, so I've an anxious wait until then.

Hope you've been getting about and about, our garden is starting to awake from winter and I've been pottering about most days getting it ready for the better days to come, although I'll miss not having a glass of wine in the garden on the summer evenings as I'm told alcohol is not recommended post treatment, which is a pity as it was one of the few pleasures I was looking forward to enjoying.

We've not  heard from Erica, but I do hope she is recovering well and once again I hope you are getting your life back to normal Mary and that your progress back to normality is gaining pace!

My best wishes.

Peter.

The saliva thing gets better but takes time, at around 10 months mine has improved although a pack of crisps is out of the question.

Nobody has ever mentioned alcohol to me, i enjoy a beer at the weekend.

Sounds like your going great guns all posotive

Irate

Thanks, I was told I could have the occasional bottle of Stout to help me gain weight but after a few bottles I discovered I wasn't a fan, I'll try a large bottle of quality lager this weekend as I'm sure the occasional bottle will do no harm, would much prefer a large glass of red though!

Can't wait though to taste a pack of of smoky  bacon crisps, hopefully later this year!

Cheers

Peter.

Hi Peter and everyone here.  

Time is flying.....

The coating on tongue has eventually gone and I am maintaining my weight with the help of protein drinks.  We have came along way.....still taken small steps with food, I' am happy how far I have come.  I can now eat shepherd's pie but mash and veg are never too far away with a glass of water.

I had a throat infection and got antibiotics for it.  The infection is gone now.  It was followed up with the team and it was checked out. I will get more of these infection due to food lodging where the tumour was and I will need to gargle my mouth after each meal. I have a follow up in a few weeks in relation to this.   I also have a double chin now due to  lymph not draining away. Which I feel so not me, I dont like looking at it. I'm trying to keep positive and tell myself I could be alot worst. I have booked myself in with a massage therapist who has good knowledge of this. Also, I'm going for speech therapy....I have alot of exercise to do.  The speech therapist said I have stronge muscles which is of great benefit to me.

I am out everyday for my walk and the odd cuppa here and there. I got a new bird stand which can hold 3 to 4 bird feeders.  The birds that come to it are wonderful to look at from morning to evening. I planted a few daffodils which have came but the storm gave them a fair shaking. Must keep a watch out for a 3 leaf clover!

You wont feel the 29th of March Peter.

Great to hear from you. 

Mary.

Hi Mary,

Great to hear from you and it would seem we are both having similar issues with eating, we are both getting there slowly it's just taking time which I suppose is to be expected. My NHS dietician ordered more drinks from Abbot for me but apparently they are out of stock so I was only sent 15 bottles, hopefully more will be available soon.

Sorry to hear about your throat infection, glad the antibiotics have cleared it up.

I'm very self conscious about the large double chin I've developed, it feels hard under the skin and moves when I speak which makes me want to stay indoors and like you I feel so embarrassed just looking at it, I suspect it might be Lymphodema but I'll mention to my doctor when I see her next week, thank you for mentioning the therapy your doing, I will definitely try a massage therapist as well.

I've just my bird feeders out as well but within minutes the squirrels are on them trying to destroy them, at least the constant opening the back door and running out to the garden to chase them away is giving me some much needed exercise!

My first daffodils have just flowered this weekend and have brought some much welcome colour to my otherwise bleak garden.

Once again it's great to hear from you Mary, our postive attitude will see us through this.

Kindest regards

Peter

Hi Mary,

Hope you are well and that your throat infections have now gone, I can't believe it's over a month since we last spoke!

I do hope your final scan was good news and all is ok with you, I'm pleased to say both my PET and CT scan both showed that my back of the tongue cancer has gone and I'm now in remission.

I'm very relieved to say the least as the last 8 months have been a rollercoaster of emotions and to be honest it's been absolute hell some days but here I am at the other end at last!

I'm 14 weeks post treatment now and although I'm now all clear I still seem to have a very sore throat with issues swallowing and a deep nasal voice plus the Lymphoedema has made my neck swell up like a balloon making me very self conscious about going out.

How is your appetite? Mine is still non existent and with no taste and saliva I still really struggle with food, however its a small price to pay for being clear and I know and pray things will get better eventually.

Once again Mary I hope all is well with you and that the post treatment symptoms are not too much of an issue for you and hopefully we can now both get some normality back to our lives.

Best wishes

Peter.

[@watsons]‍ 

Hi

Have you not had an appointment at the Lymphoedema clinic to learn massage techniques to move all the fluid in your neck ?

[@watsons]‍ 

Hi

Have you not had an appointment at the Lymphoedema clinic to learn massage techniques to move all the fluid in your neck ?

Hi,

Thanks for the advice.

I was told by my oncologist that it was an unfortunate but common side effect of the radiotherapy, when I asked if anything could be done about it I was told it was something I'd need to live with and it might go away in time.

I've since learned there is a Lymphoedema clinic in the same hospital I was treated in but this was not mentioned to me, apparently you need to be referred by the oncologist which I'm about to do.

Hi

I was told it was a side effect of having all my lympth nodes removed with nothing in my neck left to move the lymphatic fluid, thus i had to learn to move it to the ones under my armpit.

I had the lymphoedema under control by the time i started radiotherapy and keep it under control by using these techniques.

It's strange how different people are told different things i was referred to the lymphoedema clinic based at my local hospice.

Keep posotive

Sorry to jump in on this post but my husband is now 10 months post treatment for tonsil cancer.  He also had lymphoedema of the neck due to the effects of radiotherapy.  I just want to say that you can be referred to the lymphoedema clinic not just by oncology but also by you gp, obviously it's better to come from the oncologist as it will be faster.  He was given exercises to do and they have a big effect on your appearance if you do them everyday, he goes to clinic every 4 months or so for a review. Please don't think it's something you just have to live with

hope this helps

Judy 

Hi Peter and Irate

What wonderful Good news Peter. I and so happy for you and your family. It's a great weight off your shoulders.

My appetite is still the same. Having soft food mostly, having to drink water with every bite I take. Slow progress..... a yogurt that I have been taken all along, irritate my tongue recently, dont know why but wont be having it again. 

Hows your speech? I am doing exercises to improve mine and find it very tiring and takes up alot of time. Which I never expected and will need to do for ever more.  It's a change of life but looking at the bright side I know I could be alot worst.

Thank you for telling us your brilliant news,

Take care all, Mary. 

Hi Judy,

Thank you for the information, there does seem to be a mixed feedback from the medical staff I've spoken to re my neck Lymphoedema, today I had my final meeting with the McMillan nurse to have my feeding tube removed (what a relief!) and when I mentioned my large neck swelling she said the same as my oncologist, that it was something I'd have to live with and that I was to massage my neck regularly and that might help, but no mention was made of any clinic.

I will contact my GP as they might be more able to help as my neck is very swollen and tender and seems to be getting worse with every passing day so I would like some help to relieve the swelling.

Thanks again for your advice.

Best wishes.

Peter.

Hi Mary,

Great to hear from you, yes it has been a great weight of my shoulders especially my wife and daughters as it's not been easy for them,  they've been a rock to me during the last six difficult months, although I'm still in a permanent state of tiredness and exhaustion especially in the morning but mentally I'm more back to my old self.

My voice has gone very nasal and I'm told this might be a permanent feature but the good news is I no longer need to do the speech exercises which is great! My appetite like yours is very slow progress, to be honest if it wasn't for my wife forcing me to have regular meals every day I'd probably not eat at all, as it is I've lost nearly 7lbs since February I must try much harder to eat more!

My RIG feeding tube was removed today, what a relief to feel it gone!

Once again Mary we are both now on the home stretch and thank you for your kind words on my good news.

Best wishes

Peter.

Awe, That's great news the RIG is gone. Onwards and Upwards Peter. Chat again Soon.

Take care

Mary

No problem, you're very welcome. if you search YouTube or Google for lymphoedema exercises for head &neck cancer you can make a start whilst your waiting to be referred, we were told once you had it you have it always so they really are key to keeping it under control.  With regard to eating, taste will eventually come back, unfortunately if you liked chilli/curries etc you probably won't be able to tolerate them anymore!  Hubby still has to have water to hand and needs it for every meal but he does now eat relatively normally.  His appetite did take months to return tho and is still not completely back how it was.  Please don't take any of this negatively, I just want to reassure you that what you're experiencing is 'normal' 

take care

Judy x

Hi Judy,

Thanks for the advice on the You Tube videos, I've been looking at several of them this morning and as you say this will start things going until I can see a Lymphoedema nurse.

I really enjoyed Indian food before my treatment and last week I thought I would try a mild curry carry out from our local Indian restaurant for my birthday and wow that was a big mistake! The pain and burning on my tongue and throat was painful, so lesson learnt, no more spicy food!
Thank you for the reassurance that my appetite and taste will eventually return, I know it will take time but I used enjoy my food and especially a glass of wine but after six months of no alcohol I now realise I don't miss it at all!

Best wishes

Peter.

Hi everyone,

It's been so long since I came on here. Just wonderful to read you're in remission Peter! So happy to read your news, and your tube is out, phew. I had scans in the beg of Feb and also had the all clear - although they never found my tumour so I guess it could still be there lurking!

When I had my right side lymph's removed I was given this link (below) for any lymphoedema. I did it every morning in the shower (soap as an emollient) and it completely removed my (gorgeous) double chin. After treatment I stopped as I didn't have any swelling and I was told my system would eventually start to compensate. A few months later I told my physio my jaw was sore, after examining me she said I had lymphoedema and I should continue the massage probably forever. So I'm back to the daily rub but I have no swelling or soreness again - takes about a week to see any change at all.

youtu.be/VQdLZ26r-rU 

I'm eating completely normally, still not a fan of sweet things but I can eat spice again and enjoy a large red :-)  I'm not tired, my saliva is maybe 70-80% - main concern is the tightness in my neck from surgery.  I do get sick a lot, my immune is pretty screwed but I'm trying to eat well and it's just a waiting game I guess. 
Mary glad to hear your throat infection is gone and you're feeling more like yourself. 
Take care all, Erica