Living with ACC

Hi Ali,

***There is life after surgery and radiotherapy!!!***

I was diagnosed with ACC of the right submandibular gland in 2012.  I had surgery and six weeks' radiotherapy.  It was gruelling, and it really was a case of taking each day as it came, and I am going to be frank - if you are two weeks in, it is going to get worse before it gets better.  But it will get better.  I'm now six years post treatment.  I don't have any appreciable long-term side-effects, and best of all, I don't have cancer - and life is good.  

I know how tough it is to stay strong, but know that there are increasing numbers of us who fight cancer and win.  You can do this!

Best wishes to you,

Jonathan. 

Hi Ali

I was diagnosed in August 2011 with ACC of the left bronchi. I lost a lung and he surgery was followed by radiotherapy but I am still here, work full time, look after my family, run a Guide unit and a Rainbow Guide unit and enjoy being me. I have walked the Cotsowld Way with friends, I go camping and in the summer I was climbing waterfalls in the Lake District with my daughter.

Unfortunately I have had it return twice now and it was partially treated with radiotherapy last time but this time it is a bit more difficult to treat. But I am determined to carry on and not let this disease stop me.

Once you have finished radiotherapy you will start to see the other side and be positive as you can have a life afterwards.

Liz

Hi,

you do not say which gland was affected.

there is definitely life after diagnosis lots of us have lived 10 years or more as acc is slow growing.

i was diagnosed in 2009 and now have lung mets but still lead an active life.

some people get a complete excision and do not have lung mets.

most of us have the 6 weeks radiotherapy and it is hard but life goes on and they do help you through it with support and medication.

best wishes 

ruth

Thank you so much for being frank but giving me hope. Three weeks in to radiotherapy now and no taste buds left. I’m getting on with life and trying to keep fit and smiling. 

I hope that you’re feeling well too.

Hi Ali

I had left parotid removed and 30 x RT finished last September. It was a gruelling time, and it took until November before I felt well enough to return to work, feeling a bit 'diminished'. 

Taste buds and appetite came back to me bit by bit, and pretty much back to normal (whatever that is) now. 

Feels like an old chapter of my life now. 

Stay positive, you will beat it.

And if you haven't yet discovered it, the head and neck group have a wealth of experience, hope,humour and good advice in a busier forum than this one for us 'special' and rare ACC people ;)

Thank you Mike, I’ve just finished week five of radiotherapy now and am soldiering on armed with new pots of skin moisturiser and a smile!!! I’ll have a look at the head and neck forum too. 

Ali

Thank you for your support Jonathan,

I have now completed my radiotherapy and am starting to feel cautiously more positive. Can I just ask how long it took for your taste to return as I'm finding it difficult to want to eat but realise how important it is. I'm seeing my oncologist after Christmas so it's a waiting game now. I hope that you are well and enjoying life.

Best wishes

Alison

Hi Jam Butty,

I've recently had my left Parotid removed thanks to ACC and I have just started 6 weeks of radiotherapy. I was wondering how you are a year on from your treatment?

Chris

I'm actually now two years out of radiotherapy. I took 5 months off from work after the surgery and RT, and returned to work gradually. At the beginning of 2019 I opted to go back full-time, having been doing only 30 hours/wk.

My taste is 95%, my pain in the surgery site is minimal, and life is pretty much back to 'normal', whatever that is.

I suffer from fatigue more than I used to, and docs think that might be down to thyroid damage, and I also have developed a pinched nerve around my left shoulder which may also be related to the the location of the surgery and RT.

Aside from that, life is good. I take more holidays than I used to, and I eat just whatever I feel like eating.

It felt like a really long road to normality, but looking back now, it seems like a blip. I still have 6 monthly scans after initially having 4 yearly, and though I suspect I'm not yet done with it, all is quiet on the C front.

I wish you the best in getting through the RT, and the recovery from that. Humour is good.

I recently made a gargoyle out of concrete using my RT mask as a mold, and this now spouts water into my garden pond. 

Always here for a chat if you need anything,

Mike