Sore tongue and mouth 2.5 years post treatment

Hi stitch5758

I had a base of tongue SCC with similar treatment to yours.  Mine was back in 2013.  After a couple of years my dry mouth, which had been slowly improving, suddenly started to get worse.  It turned out that I had an underactive thyroid which was caused by radiotherapy damage.  One of the side effects was very dry skin.  I was applying hand cream and facial moisturiser several times a day.  I didn't connect at first how this was to do with the dry mouth but the medical people told me to imagine the same state of dryness in the mouth that I was experiencing on my face and hands.  Once they started me on thyroid medication the dryness rapidly improved, along with the mouth and tongue soreness that the dry mouth was causing.

You haven't mentioned any other symptoms to suggest a thyroid problem and it is something that your medical team should be automatically monitoring you for.  However I thought I would just mention it as it was my first thought when I read your post, and I've heard of a few patients recently not receiving their thyroid checks.  

Hope that you get it sorted out.  Let us all know how you get on with the GP next week.

Best wishes xx

Thanks Margaret. About 18 months ago my thyroid function was questioned but tests came back ok. Never mentioned again. I will raise this with the Gp. I do have dry skin but didn't think that this was unusual. I have however been extremely tired over the past 6 months and maybe it's all connected.

Love your quote at the end of your post.

Karen (stitch5758)xx

Hi Karen

Thyroid problems are difficult to spot unless they are specifically tested for as most of the symptoms are ones that we can generally suffer with for a while after radiotherapy.  Tiredness is one of them.  I found that my tiredness after treatment initially improved but then started getting worse again.  I was told that 18-24 months after treatment is the most likely time for thyroid problems to develop so it may be worth asking for another test if you've not had one for a while.  

Glad you like my quote.  I have quite a collection of them now.  I used to change them every 6 months but I've grown fond of this latest one.  

Take care xx

Hi Karen. I think Margaret’s idea of having thyroid checked again is an excellent one - I understood that thyroid damage from radiotherapy can occur 2, 3 or occasionally more years after treatment. I’m 18 months post-treatment and getting my thyroid function checked every 6 months - don’t think my GP would be reminding me though - this essential test is done in a hit & miss fashion fro H&N cancer patients. The tiredness, the dry skin....it’s certainly possible. One would have to say that having a relatively dramatic change, as you have noticed in recent months must be caused by something.

Another  suggestion - you said the soreness and dry mouth improved a bit with anti-fungal therapy. Thrush doesn’t have to be barn door obvious with raging red sores and white spots. I have had multiple episodes of thrush over the last 18 months, firstly It was as soon as the anti-fungals stopped, but more recently much more subtle. For 3 months (since stopping a long term maintenance dose of fluconazole) I have had intermittent red dots in my mouth, red patches on my cheeks (faint) and intermittent sensitivity on flossing and with spicy food, as well as worsening dry mouth - all these symptoms new in last 3 months. So I tried a course of fluconazole - bang! All better! So probably a persistent chronic thrush infection, with little obvious to see, so worth having a decent course of fluconazole (2 weeks?) and maybe a topical anti-fungal like daktarin (nystatin is full of sugar which is rubbish for us with dry mouths and a high risk of tooth decay).

Final thought - JosiefromGlastonbury might suggest that you consider if the soreness and sensitivity could be caused by silent reflux - (laryngopharyngeal reflux). She explains the reason behind this very well. Worth a thought if nothing else helps. 

I can completely understand how frustrated you must be at seeming to go backwards after such a great recovery. I’m sure this is a temporary blip and I hope you get to the bottom of it and back to “normal”.

Hilary

Hi I’m 3 mths post radiotherapy having had 30 treatments after chemo of carboplatin & 5FU for a base of tongue SCC. I’m on my second bout of oral thrush so taking fluconazole. Over the last month I have developed what I can only describe as a turkey neck and was worried about this being thyroid related my GP took blood which has all gone back as satisfactory. I don’t have any other symptoms such as tiredness. 

My eating is finally improved and I’m trying a variety of foods but small portions. Mild curries nip a bit but I’m good with chocolate  haven’t tried alcohol yet.

I’m seeing my consultant next Tuesday and am going to raise this with him. It’s useful to hear about these problems you have all faced so long after treatment. 

My husband had turkey neck, it was lymphedema after the radiotherapy,  the local hospice had a lymphedema clinic ,which gave him exercises and a face mask to wear at night ,it did improve .

Julia

Hi. About the Thrush - a few of us keep getting recurrent thrush after radiotherapy - its just unlucky, an immunity thing. If you do get it again, make sure someone (practice nurse or H&N nurse) gets a swab to check it isn’t resistant to the drug they give you, and also ask what the plan is of you get it again and again - in my experience they just hope it will go away and management is very hit & miss.

Julia’s right about the turkey neck - classic for lymphoedema and 3 months post-treatment is the classic time. About 50% of Head & neck patients get lymphoedema but again many teams are just reactive and wait until you ask about it, rather than warning you to look out for the signs. You will need  referral to a Lymphoedema specialist (often a nurse at local hospice) and its a combination treatment. Usually neck exercises, gentle massage, careful skin care and sometimes a collar or similar or wear. As you will need to be referred I would contact someone in your team asap- tomorrow - as I waited a month after referral for an appointment and the quicker you start to treat the lymphoedema, the quicker is goes, but it can takes ages. 

Sounds like your eating is improving really well - great news! Be careful of alcohol - its very drying. weak stuff first - beer, weak G&T etc. Wine is still a complete no no for me as it tastes vile now (sad face). However fizzy anything is fine! Bring on the champagne/cava/proseccco!

Best wishes for your continuing recovery

Hilary

Thanks for the information about lymphoedema. I don’t remember my medical team mentioning this prior to treatment. Also surprised my GP didn’t diagnose it. I’ll discuss it with the team on Tuesday. 

Also useful advice re thrush. You guys are so helpful

Hi Karen

I completed my treatment in August 2018.  In October I had my bloods checked and the result for my thyroid function came back as showing some abnormalities but not enough to take medication.  I had my thyroid tested again in December (same result)  but last week it was confirmed that it has now progressed to full hypothyroidism so I will be starting medication.

As Margaret and Hilary have pointed out, underactive thyroid as a late effect of rt is not mentioned by many hospital teams, including mine.  I read about it elsewhere and recognised some of the symptoms so made specific enquiries.

I would definitely recommend getting your thyroid checked again as well as having regular blood pressure tests.

Good luck Karen.  Do let us know how you get on.

Linda

Hi all who have responded to my post

On Monday I saw the Gp in my practice who has a special interest in ENT. I went armed with all your comments but probably unnecessary as he was marvelous. He had a massive knowledge of my cancer and treatment and seemed more 'on the ball' than my consultant (who is now retiring and I  probably won't see her again).  The Gp couldn't understand why I hadn't had my thyroid tested since the last one as it was 11.4 then and normal range is 11-25.  He prescribed a 2 week course of fluconozole and ordered a thyroid function test. He rang this morning to confirm that the thyroid is now underactive and has started me on thyroxine. 

I have never been so relieved to have something wrong with me! Apart from the dry, sore mouth the underactive thyroid accounts for so much of the other symptoms that I've been experiencing,  tiredness, low mood,  etc. Hopefully I  can now look forward to being more active and generally healthier.

Good luck to everyone with your recovery and keep using the forum for advice. It has one again helped me.

Karen