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.

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 ?

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

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

Take care

Mary