Hi Helen

I have had similar surgery done, radical neck dissection, removal of salivary glands and lymphs in neck. and radiotherapy to jaw neck and salivary gands. The hospital should have given you a wad of literature by now so I won't repeat whats in it. But if you have any specific questions I will reply as best I can.

Eating will definitely be affected due to raw mouth and throat, so make sure to use the 2 part mouthwash Caphosol regularly to help prevent mucositis and also due to loss of taste in third week. Dry mouth is also a problem so sip water all the time, this is permanent, so its worth buying a stainless steel sports type water bottle to carry everywhere. If he gets problems with speech a speech therapist will get him back on track with a set of simple excercises for both speech and the swallowing reflex. Skin burn can be treated with a cream which the radiotherapy team will provide for him, use it regularly slop it on. Teeth need to be kept really clean and changing to a soft toothbrush will help to not hurt gums. Sloppy foods are all I could eat and with great difficulty, porridge, custard, rice pudding, milk shakes, ice cream, runny cottage pie, with soft mashed potato, eggs done every way, soups with added cream to keep the calorie intake up. Plus fortisip type supplements, he will lose weight though. Avoid spicy, salty, acidic or citrus type food and alcohol is out, it stings. Extreme tiredness is common, so be prepared to rest when its needed. The last week and the following two weeks are the worst then it gradually gets better, even at first if its only not having to make that daily trip to the hospital.  The radiotherapy department will give him lots of support to get through this so if there are any problems mention it to them each day and they usually have a solution. He will get through it and things will get better with time, taste and appetite will return as will opera singing in the shower as he practices the scales for his mouth and throat excercises. Kim

Hi Kim,

Thanks for the reply, will get him a water bottle and softer toothbrush. Just looking on internet for some sort of neck tube/scarf, he has been told he has got to keep area covered from sun while he is having his radiotherapy.

He is hoping to be able to drive to his appointments but i think with what you have said i don't think he will feel up to it.

How has your recovery been Kim ?

Helen

Hi Toriat84 and Helen! My name is Kaye and I was first diagnosed with ACC of the right parotid saliva gland when I was 15 years old. I am now 31 and I am still fighting this disease. I hope Toriat84 that your treatment went well and you was not affected as much and I hope your husbands went well too HelenP. I couldn't handle the mouth ulcers that I got due to Radiotherapy and ended up just drinking fortisip! Let me know how you have got on? I have had this disease for quite a while now and if you have any questions I'm more than happy to answer them in an honest way. I live in Manchester. Regards Kaye

Hi Kaye and Toriat84, 

My hubby got through his radiotherapy ok. The staff at the hospital were amazing. It was a struggle towards the end but he got through it and took great pleasure in getting rid of his mask when he had finished.  A big change in his eating and drinking habits so the fortisip drinks helped a lot.

After he finished his treatment he was sent for a pet scan, the results where a bit of a shock when they said it had spread to his ribs and spine. So last year he went back for 6 months Chemotherapy.  We was there every Friday. Again the staff who are very busy and short staffed on occasions where great.  We also got to meet a lot of brave and amazing people who's lives have been affected by this horrible disease.  

He finished his treatment the beginning of December and we had a great Christmas,  even managed to escape from the kids and grandson for a short break in Torquay for a few days. .

He had a pet scan January and it's on the move again, his consultant wants another pet scan again beginning of April and then back to see him. Not sure what the next step will be so we are taking one day at a time.

To look at him you would never know anything was wrong with him. He is currently locked away in his garage tatting with his motorbikes. He is eating better and putting weight back on which is a good thing.  

I wish you all the very best for the year to come.

Helen x

Hi toriat84, 

i know it's a while since your post but just wondered how you are doing? I too have ACC and had my submandibular gland removed. I'm currently two weeks into a six and a half week stint of radiotherapy and just wanted to know any tips on how to cope?

Hi Kaye,

I’m new to this forum and have just received my diagnosis of ACC, I was wondering, how does one get referred to the specialist hospital in Manchester?

I have been told that they can not operate but I want to seek a second opinion. Kindly advise.

thank you

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

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

Hi

hope your ok, always worse for the partner, I think.

I don't know much about the notch gene but they are doing research and drug trials in Manchester at the moment.  I have been tested for it but don't have it.  A lady called Ruth who has ACC is from what I read the go to!, she's on here or Macmillan site.

I wasn't getting scans or any information so I asked for a second opinion.

thinking of you

take care in these terrible times

Shirley

Thankyou Shirley, I hope your doing ok too. Yes my husband was prime candidate for Mr Metcalf in Manchester but it's been 18month and no evidence of return and they contacted us yesterday to say the trials are coming to an end. Obviously it's great news the cancer hasn't returned and we are hopeful of other trials. Just praying the symptoms he's getting are nothing todo with its return  
I always said my husband was one in a million so we joke about his statistics and say we didn't expect anything else.  
kind Regards

NNEB

Yes, all good here, three years with no return!! 
 

good luck with all the tests

take care and keep positive 

Shirley

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