Adenoid Cystic Carcinoma diagnosed

Hi Nik_M 

Sorry to hear about everything you have been going through as if you needed all that on top of the diagnosis. I can certainly relate on the extended period to diagnosis even though my wife's cancer is very different but also classed as rare.

<<hugs>>

Steve

Thanks for messaging Steve. I'm sorry to hear that your wife has cancer. I hope she is doing ok and that you are too.

It's been a week but trying to come to terms and refocus my energy for the fight.

• Hello

I just joined this forum. I was diagnosed with ACC in September. I have had 2 surgeries (the first didn’t get all of the cancer) and I’m stsrting radiation next week. Working to keep my spirit strong. This cancer is so rare but the prognosis is good following radiation. 
My issue is primarily the inability to eat and talk without the palatial obturator. And with radiation I may be eating through a stomach port. I’m scared but resigned to the journey. I wish you well on your journey. 

Hi 

I'm sorry to hear of your diagnosis.

It's a really tough diagnosis with the limited informaton out there but I found a really good resource and support in the Salivary Gland Cancer UK charity (https://www.salivaryglandcancer.uk/) and also used https://accrf.org/ as a resource.

I'm on day 33 of 35 of my Proton Beam Therapy treatment.
Looking forward to finishing the radiation this week. It's been a long road already.

I was fortunate from an eating and drinking perspective and can only imagine how scary your situation is. I'm at a loss of words for you. All of our journeys feel so isolating but feel free to message if you need to talk or vent.

I am on Reddit on https://www.reddit.com/r/HeadandNeckCancer/ and there are a number of people on this sub reddit who may be able to offer advice or share their experience. I've met a number of supportive people here who have helped me on my journey so far. I often see others voice their concerns and ask for info, there may be someone else who has dealt with the same issues you are facing that could offer guidance or answer questions if you have them.

I wish you well too and pray that you can get through this part of the fight in good health.

Yep similar happened to me. I had been diagnosed through covid and a year later with cluster headaches then 2022 they asked me to come in and the consultant told me he feels he failed me as the CT scan did show cancer and he had misdiagnosed me approx 3years when I finally had the biopsy done I was already Stage 4 and no treatment options. I am now palliative care. I am 43yrs old with 4 children. I could shout and scream but it will get me nowhere at all  

my goodness what you have been through is a lot. Are you okay? Do you have support? Please feel free to message me.