Many thanks

hi I’m Shirley

hope your wife is doing well.  I had a total parotidectomy, facial nerve removed with lymph node April 2018, followed by 30 radiotherapy sessions.  At the time I looked terrible, felt even worse but your just on that horrible rollercoaster! 18 months on with clear scans and I feel much much better. Face,scars etc all doing well, been on lots of hols and enjoying life again.  Any question just ask? Both take care

Shirley

Hello Shirley

Thankyou for that. My wife was diagnosed with ACC left parotid in January. Bad news got worse when the stage was advised. T4N2M0. Full parotidectomy with nerve sacrifice undertaken with nerve regraft completed during the 8 hour surgery. 

Then the hell of 30 radiotherapy sessions at we were told a very high level of intensity. Painful weeping burns of course. 

Now - we’ll we are in scan and rescan world. Trying to de focus of course but it’s not easy is it? 

We have been told that lung/brain/liver mets may follow or local recurrence.

With regard to her left eyelid she has been experimenting with different external weights with a view to a gold insert in a few months time. She started at 2grams but now 1 gram seems that it might be just about  right. Did you have a similar trial?

Alan

Hi Alan

Very similar but not as bad. Had 6/7 hr op, nerve resection, lymph node removal, stage T4aN1M0, then 30 sessions of radiotherapy. 18 months on and face, scars etc all looking much better, my eye closes now was a problem for a few weeks, just had all clear on MRI and CT scans so feel much better.  I'm with a doctor who is a ACC expert, he runs trials for drugs for ACC and test bloods dna and tumours to find out why you got it and if it returns maybe a drug trial.  My surgeon was checking me every 6 weeks, this was very stressful and he wasn’t willing to do anymore scans ... how could they know if it was back? Asked for a second opinion from and I will be scanned every year.. happier now.

T4 sounds bad, but they  explained T2 was the size of my tumour, T3 because it had spread and T4 because of the nature of ACC

info .. do you know they hold ACC meetings twice a year for ACC patients and families to go to, here you can find out about trials, new drugs, treatments etc and speak to other affected.  Last one was in London next one in Glasgow Nov 19.

thats it for now

send you wife my best, I know how she feels

take care

Shirley

its been a rollercoaster as I said but at the moment enjoying loads of holiday and TRYING not to Stress!!

Hello Shirley, many thanks for your reply which I have shared with my wife.

She is wondering if you mind me asking you for some more details regarding your eye closure. You mentioned that your eye closes ok now and that it sorted itself out after just a few weeks. Did you mean that it was ok within s few weeks of the surgery and radiotherapy? My wife is now around 9 months post surgery and radiotherapy and during this period she has gradually been reducing the weight of her external eyelid weight from 2grams down to now 0.8gram. She will be offered an internal gold eyelid weight at the end of this trial period which will probably last a year or so. 

If my understanding is correct even though you had a full nerve resection and grafting your eyelid is now working fine without any surgery or external weight. I guess my wife is hoping that she may have a similar experience.

sorry this is such a long message

hi

hope your both keeping well.

my nerve resection was the nerve that effects the lips rather than the eye.  My right bottom lip still doesn’t work properly but it’s definitely 90% better than after the op.  Straight after the operation, I couldn’t  close my right eye properly, they but a patch on it whilst I slept, as the days went on and I exercised my face in the mirror or tried to as it wouldn’t move, it took about three weeks from operation to close it properly, it sounds ridiculous but it was slow to use, it just about closed, now it’s just like my left eye.  My eyebrow movement came back after about 2/3 months but I still have a slight swelling below the eye on the cheek bone.  My lip took twice as long as the eye to move, my smile came back around the 6 month mark.  I’d say my face has improved month on month but as long as the cancer stays away I’ll be happy ! 

I was offered facial rehabilitation, but I’m a hairdresser, I talk all day and I think that has helped.  When I’m off work, my face neck jaw etc fell really stiff, I think my job has saved me or maybe my non stop talking.

hope this helps

after my all clear end of August, I feel the best I’ve felt in the last 18 months, my husband doesn’t agree, he is still stressed out but I think it’s worse for your partner.

take care

Shirley

Hi Alan, I will follow this thread with extreme interest as I have been diagnosed with the very same yesterday and expecting surgery shortly. Give your wife my best wishes.

Hello Brian, sorry to hear your news. If you have any questions will do my best to help. There are Adenoid Cystic Carcinoma forums on Facebook and on the Macmillan site you can search for discussion threads. Wishing you the best for your surgery.