ACC cure?

Hi Brian

I had ACC diagnosed back in 2009 and had several treatments for this.  I know we have a ACC group on mcmillans, but it seems quite at the moment. I have seen this article as having ACC I do look around to keep myself updated. ACC is considered rare, but there has been a lot of research for this cancer going on both internationally and here in the Uk. Also there is the Salivary Gland Cancer UK site which covers ACC and is a good source of info too.

I am glad you are recovering well from your op, I have wondered how you were getting on. One thing, ACC often is slow growing.

Best wishes

Nicky

Hi Brian. It appears this article is dated 2017. I found a later update by the same author dated last year. I can’t find any clinical trials as yet so maybe this is still in the research world. Maybe ask your oncologist whether there is any trial ongoing

Hi Dani/Nicky, Thanks for your replies. I have been looking for further info on this, but it seems that there is little more to find (as yet). I had my first post surgery appointment with the surgeon yesterday (surgery was the 13th of August. The main points I was told were:

He removed the left Submandibular Gland, the Sub Lingual nerve, a lot of neck muscle and multiple lymph nodes. Has not yet received the histology report fbut says that a verbal report stated that many of the lymph nodes showed cancer infiltration. He suggested that the staging (to be confirmed) was T3 N3 M0

He advises Radiotherapy but warns that complications are very possible and will be worse than the surgery. He had removed a lot of bone for a bipsy prior to surgery and warned that the jaw looks very fragile and could possibly break due to radiotherapy.

 He also also explained that ACC is resilient against both Radiotherapy and Chemotherapy, but radiotherapy is all that they can offer.

He said that the cancer will come back, duration is normally 5 to 10 years.

 He said that he cannot speak about “clear margins” as the cancer was in the nerve and can jump and appear further along the nerve.  

I will be discussed in MDT tomorrow 6/8 and will be contacted by the oncology dept to prepare for radiotherapy.

Any suggestions would be more that welcome. I had already decided just to go ahead with the radiotherapy, but his views about the benefits/risks have given me pause for thought.

Regards

Brian

Hi Brian

Brian Mc said:

 He also also explained that ACC is resilient against both Radiotherapy and Chemotherapy, but radiotherapy is all that they can offer.

I think this bit is very important. If recurrence is inevitable and radiotherapy of little use then quality of life is paramount to my mind.

The only thing I can suggest is to ask about the Swedish research. After all patients used to be send to The States for Proton before we had any capability here.

I hope you can find a way through this

Hi Brian

ACC can be slow growing so this can give us some time to decide what to do. I understand why you are now paused for thought on whether to have radiotherapy on what has been discussed with you. You had so much to take in and process with your consultation. Maybe when your consultant tells you about the histology you may know more.  You could ask for more time to think things through if this is what you need.  Maybe introduce yourself on the ACC group here to see if somebody could add or suggest anything also. It is quite there but someone may respond.

Best wishes

Nicky

Hi Brian 

I hope you are recovering well . My mum is a 17 year survivor of ACC parotid with lung mets 6 years ago . 

The ACCOI website is good as is the Salivary gland uk and ACCRF website . Every case is so unique try not to read too many statistics and stay positive some people manage to live very well with this even though my mum had multiple lung mets she was walking 5 miles until recently when she caught a chest infection hopefully she will recover and be back doing that again 

good luck