Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Post treatment

AnnaLJ
Posted by

So I am 4 months post treatment....scan results showed NO cancer left at all... but I’m still so sore...my throat and I still have a huge ulcer in the back of my mouth..I was hoping by now it would be healed....any one else had similar?...

Anna......
AnnaLJ
Posted by

Just to add I had tonsil cancer..35 RT and 3 chemos 

Anna......
Hellebore1
Posted by

Hi Anna. I don’t know if it helps, but I was exactly the same. 3 chemos & 35 radios for tonsil and lymph node cancer. At 3 months I still had a really sore ulcer at the back of my tongue - not the tonsil area, but tongue, and I was really fed up with it as no one had warned me things could take so long to heal. But by 4 months it has gone - so yours will too, very soon hopefully. It’s undoubtedly very hard dealing with all the post-treatment issues as most of us are so poorly informed beforehand. But take heart - slowly, very slowly you will improve - bit by bit. Look back a month or 2 and hopefully you will realise that you are in a better place than you were then. 

I felt so lonely at the 3-6 month mark - friends and family were so relieved that I was looking so much better (7weeks of Chemoradio isn’t a great look is it?) and in reality they didn’t want to hear how hard I was finding it. I had permanent hearing loss, recurrent oral thrush, couldn’t eat properly, I had neck pain, a croaky low voice etcetc And all people asked me was ,’When are you going back to work then?” Mentally I was a wreck. But I did get back to work and I’m now more than 2 years post-treatment. I can do anything I want (within reason) but I’ve had to learn how to do some things again and I’ve had to compromise too. Gum when I want to exercise or walk, hearing aids for the hearing loss, Boots Dry mouth spray to get me through a mornings talking at work and XyliMelts at night for the dryness.

So please keep persevering and be positive if you can. But find someone to confide in - a best friend, partner or maybe the best is someone who has gone through the same thing. I see 2 friends regularly now - new “Head & Neck cancer” friends that I have met. We can talk (and moan) in a way that I cannot with my loved ones and it really helps. 

I wish you well - great to have a clear scan. Move on, small goals not ambitious ones and celebrate the progress you have made, not mourning what you wish for. It will come......

Hilary

AnnaLJ
Posted by

Thank you...how you describe things are exactly how I feel..it’s good to read you are better down the line..it’s difficult when know one close really knows how it feels...

thank you...

very kind regards

Anna

Anna......
Trickycycling
Posted by

Hi Anna LJ.

Have you tried the anesthetic Difflam mouthwash?

As well as making eating more tolerable it is also good for keeping the mouth ulcers at bay

One of the lucky ones.
AnnaLJ
Posted by

I haven’t since treatment...I’ll start again with it..

thanks 

Anna

Anna......
Chicotime
Posted by

great advice Hilary

i still have croaky voice and sore throat in the morning 12 months later.

i too have to compromise as you dont get everything back...but i would have taken all of this when i was diagnosed at the start

good luck

chas

coral72
Posted by

Ditto - great advice Hilary.  I am almost four months post treatment for tonsil cancer and can completely relate to what you have said - thank you for sharing.

i have gone back to work two afternoons a week (mornings are still hard going for me) and people tell me how well I look.  It’s lovely of them to say but it’s probably due to the lymphodema around my neck and face so I look quite round, even though I weigh only 8.5 stone!!!  I dont feel I can mention how tired I am, how they have to speak up as my hearing is reduced and that if I talk for too long I will start coughing which will inevitably lead to a retching fit.  My husband has been completely amazing throughout my 7 week chemo radio treatment, but I feel even he zones out when I try and describe how I feel.  

I was a late joiner to this chat board but it has been so incredibly helpful re hints and tips post treatment and knowing what I am going through is perfectly “normal”.  My consultant said that he will see me for the next 12-18 months to check on me, not just for signs of recurrence but to keep an eye on post treatment side effects, as they can change from month to month.  As mentioned above, it’s a case of trying to work with the new “normal” and appreciating how far you’ve come.  I like these words and try to remember them when having not so great days or when getting frustrated:  

Some days are better,

some days are worse.

Look for the blessing instead of the curse.

Be positive, stay strong and get enough rest.

You can’t do it all but you can do your best.

Coral

x

AnnaLJ
Posted by

Thank you..it’s good to hear from someone who knows exactly what I’m going through xx

Anna......
Hellebore1
Posted by

Wow Coral, I am in awe - you've done really well to get to work, even part-time, before 4 months post-treatment! I went back just over 8 months post-treatment and it was hard then. I understand the problem with being honest about how you are feeling with colleagues, and even loved ones - everyone just wants you to be better so says how “well” you look. Hearing loss, dry mouth and the other effects are invisible.......My Oncologist manages to piss me off every time I see her by saying,”You look really well”! So much is not there to be seen and psychological difficulties are ignored. But your poem is brilliant - thanks for posting, it’s a reminder for me and others to be positive.

Regarding your hearing loss - I have cisplatin-related hearing loss and it came as a real blow. I was referred to a Hearing Therapist (only when I was losing it over the tinnitus) who was surprised no one had mentioned hearing aids to me. She recommended them for my hearing loss and to help my tinnitus and they are brilliant. It’s ok at home, but work is a much more challenging environment for the hearing-impaired. She gave me such great advice generally about dealing with the deafness, I am eternally grateful to her. The new ‘normal’ is difficult to come to terms with, but there is help out there in many forms. Unfortunately you have to ask for it.

All the very best to you and everyone at your stage. It gets better, but its worth asking for support and talking to those in a similar situation if you can.

Hilary

Newly diagnosed 19
Posted by

I am about 3 1/2 months post chemoradiation. I returned to work on an eight week phased return and have just made full time. I needed to go back to take my mind off of things. I am still having trouble swallowing and have had a video fluoroscopy that’s has showed some issues. I’m still doing swallowing exercises to try and help improve my swallow and am still waiting on my scan results. I get them on the 6th January, fingers crossed. I still have a very croaky voice and slight sore throat especially in the mornings and my swallow is also worse first thing. I do still feel tired, I’m sure it is only sheer determination and willpower that has got me back to work so soon. 

Kay

Kay
AnnaLJ
Posted by

You’ve done really well Kay..I’m on a phased return also..just wish my throat would get better!!..but I’m sure all we need is time..good luck with scan results xx  

Anna......
Newly diagnosed 19
Posted by

Thank you Anna, at times I feel really tired and could easily stay home, but I make myself get up and go in, once I’m there it’s fine, can’t help but think there is still some cancer there, especially with all my swallowing difficulties, that’s why going to work helps me as I have less time to think.  Xx

Kay
Lsmith87
Posted by

I am in the exact same position 4 months out.  Seems you may be a couple months ahead of me.  I, too, thought it would be so much better by now.  How are you doing at this point? Positive news that it’s getting better? 

AnnaLJ
Posted by

Hello..yes some days better than others..my mouth is very sore at the moment..but last week it seemed better..on the whole I’m much much better..hope you keep improving too!

xx

Anna......