I think it all depends on where the primary is, if it has spread etc. I was referred a couple of months ago as my ACC (which was originally in my salivary gland then came back under my tongue) has spread to both my lungs, my abdomen and the bone in my spine. I think some hospitals specialise more in the clinical trials. My oncologist referred me. I'm am currently on a trial drug to see if it helps stabilise the cancer. I would speak to your oncologist about it. Hope this helps,  Vicki. 

Thank you Vickie, at the moment I’m all over the place but I guess when I calm down, I will be able to get the support I need from the team that will be treating me. All the best with your treatment, xx RidhaJ

Hi, I’ve been reading every ones posts for a couple of days now, over and over again. The reason being my husband was diagnosed with ACC on wed 4th August 2019 much to our shock because he had first gone to the doctors back in March as I noticed on my birthday that his smile had dropped. He was rushed into hospital with suspected stroke age 48. After 2 day stay and what we believed to be thorough test he was discharged with Bells Paulsy. He basically walked out of hospital feeling so relieved and started to research about it. After 6 weeks he felt it was getting worse with numbness and stinging sensation so he went to see a doctor. They sent him two weeks later to specialist and the women took one look at my husband and said he didn’t have Bells paulsy. She asked if she could examine him, straight away she felt a small lump in his neck and she referred him to a consultant at the hospital straight away. The mean time my hubby was convinced it had something to do with dentist treatment he had previously had so he had an X-ray at his dentist which confirmed a small shadow. The dentist advised him to take the X-ray with him to see the first consultant as he was sure his facial droop had nothing todo with his dentistry. So after a further stent of appointment after appointment he was diagnosed from the biopsy as having ACC. I didn’t even go with him on the day he was told because the consultants had said previously things like you’ve dodged the bullet this time, it’s a cutler Lission, it’s benign. First biopsy wasn’t done because the scan lady said he didn’t need it it’s not cancer! What was I to think! Their are four consultants dealing with my husband and they all say different things but all agree he has ACC. His op is in s few weeks and I’m petrified. He’s given 32 years to the busiest Fire station in London and he’s never shown his fear but this, even though he’s the most positive fighter you’ll ever meet , now and then I catch an unfamiliar expression on his face which saddens me. Please did any one else take this long to diagnose and did you have any pain? We have had results from ct scan yesterday saying it hadn’t spread so we are over the first obstacle. Sending positive thoughts to all of you.

Hi

My name is Shirley, I went to hospital 11 years ago with a lump on my neck, after tests and scans was deemed ok.  Ten years on my lip, bottom right side wasn’t working properly.  Went straight to the doctors and was put on the cancer pathway, had US, MRI and CT scans and was diagnosed with ACC tumour in parotid gland.  Had operation to remove it and the facial nerve and lymph node, diagnosed T4aN1M0 because of the nature of ACC.  Six weeks after operation, I had 30 radiotherapy sessions.  I looked like a stroke victim and couldn’t see any light at the end of the tunnel!! But 18 months on, face is 90% back to normal, scars are fabulous, been on loads of holidays and am enjoying life to the full.  Just had MRI and CT scans.... ALL CLEAR !  Has been very stressful but on the better side now.  Any Questions you have, I am happy to be of help.

Take care

Shirley

Hello Shirley,

So nice and comforting to hear this. I glad you got the all clear.

Just had 20 sessions of the higher dose of radiotherapy and covered in wounds, unable to talk and all the other side effects. I was feeling defeated , worn out and fed up but this has lifted me up. Thank you.

Stay blessed.

Thank you

just a few bits of info

best mouthwash with radiotherapy. Caphosol , I used salt and bicarbonate of soda with cooled boiled water every hour I was awake and the highest strength manuka honey twice a day, was able to eat throughout the treatment and had no mouth ulcers or radiotherapy burns inside my mouth, well worth a try.  I did mouth and neck exercises to stop the stiffness all the time.

it gets better with time, I know it’s a cliche but it’s true.  Hope your coping as well as can be expected, sleep lots rest is great for you.  Take care

Shirley

Thank you Shirley, will try them.

hope it helps, good luck

Shirley

I'm so sorry for late reply. It's been a Hell of journey so far. I appreciate your advice and sharing your experience because it's such a rare cancer and hard to explain to our children and family. My husband has made a tremendous recovery since his operation and radiotherapy. He has had regular scans promising of no return. He is now having his regular scans but also recently he has been referred to a nerve specialist as he is experiencing loss of sensation on his lip area again, shoulder and pain in lower back. These will take place in the next few weeks so were thinking positive thoughts. Lockdown has been extremely tough on all of our mental well-being and it's extremely tiring trying to be positive for him and my children. I'm only now thinking I should speak to a professional. I've organised counselling for our daughter and my husband regularly speaks to the McMillan nurses. He has a very good relationship with his oncologist too.

I was wondering if you knew anything about the notch gene. We were told because my husband has this gene and his tumour was a solid his prognosis was worse. Thes words resignate in my mind and I feel panicked sometimes. I don't mean to sound negative I'm just being honest. 
 

kind Regards NNEB