Husband recently diagnosed

Hi Victoria. 

I'm so sorry to hear your husband has this. You're the second post I've read in 2 days about this and it is such a rare cancer. My dad had this cancer but his was untreatable and also went unnoticed for 5+ years.  

Look at the Christie Hospital and the Ellla Project there for ACC. 

Big hugs  xx

Thank you CazF, I had looked at the Christie hospital and Ella project after reading it on here. Step by step. Xx

Big hugs xx

Hi Victoria, I am very sorry to hear about your Husband's diagnosis. My Daughter has just been diagnosed and unfortuately, it has already spread to her lungs. ACC is typically, a slow progressing cancer and many people have decades before any distant metastastic disease is evident. There is a gathering of the Salivary Gland cancer Uk group this Saturday (4/02/23). If you email them, they will provide you with the details where you could attend in person or join via Zoom. There is also a good support network with the ACC facebook group. My daughter has been heartened by talking to patients who have managed the disease with occasional interventional treatments over long periods. 

I totally understand your fears for the future, my daughter is only 26 and I have worried constantly about her future. It is very easy to say 'a step at a time', but until you have follow up scans you will be wasting valuable time and energy worrying. 

Please join the gathering on Saturday, gain support from people in similar situations and listen to the experts taliking about advancements and treatments, I think it will be helpful to you. Keeping off Google is a good idea, most of the infornation is dated, out of clinical context and the data is misrepresented. 

I hope some of what I have said is helpful xx

Thank you so much for your kind words. We have a check up today and new scan dates for end of February. I unfortunately can’t make this Saturday but will certainly look into it for future dates