Hi I was told in October last year I had a lump in my saliva gland,
After lots of scans biopsies and an operation to remove it which they couldn't do because of the risk of my face bring paralised,
I have been told its a rare cancer called basal cell adenocarcinoma.
It's in deep and to large to remove, so I'm going start 6wks of radiotherapy in a couple of weeks. After that there is no more treatment they can do.
I really don't know how to feel,
It's a bit of a shock , has anyone else got this type of cancer
Thanks mjj64
Hello Mjj64
Welcome to the Online Community.
I am sorry to hear of your diagnosis of basal cell adenocarcinoma.
I am pleased you have a treatment plan in place and are starting it soon. It is all a bit of a shock when you are first diagnosed and I know i just wanted to start treatment as soon as possible.
I had 5 weeks of radiotherapy for my cancer (endometrial carcinoma sarcoma) so although a different cancer to you- it is also a rare one. When you have so many sessions ahead, it can feel a bit overwhelming but I found once they started they did seem to go quicker than expected. It was just getting into a routine. My hospital had a radiotherapy app that counted down each session and gave advice- that helped.
It is very normal to feel all over the place when you have a diagnosis and I went through lots of emotions- numbness, scared, angry, overwhelmed- so please do not feel you are alone.
Sometimes talking things through can help and I can recommend the Support Line. They are lovely on there. The details are at the end if it would help. I will pop some links below that may be of help.
Emotional, financial and physical help for people with cancer | Macmillan Cancer Support
Our Stories - Salivary Gland Cancer UK
Types | Salivary gland cancer | Cancer Research UK
Head and neck cancer radiotherapy | Macmillan Cancer Support
Hope this helps a bit. I wish you well with your radiotherapy treatment and if there is anything else you need, then please do ask.
Jane
Hi
I have just been diagnosed with a different saliva gland cancer and I know how scared and alone I feel.
I hope you're doing ok?
It's terrifying and just wanted to reply so that you don't feel alone. I know I'm just starting to work through all of this but thinking of you and hope it all goes as ok as possible.
Will keep you in my thoughts and prayers.
Hello
I'm sorry to hear your news.
I have recently finished 6wks of intense radiotherapy, it was tough going but I got there without to many problems,
I had radiotherapy burns on my face which are clearing up nicely,
I lost some hair around the side and back of my head.
I have lost my taste which is so frustrating,
I'm deaf in my right ear and feeling sick quite often also a dry mouth, but I'm lucky I never needed a feeding tube, and my swallow wasn't really affected,
Just my taste, I'm 4 weeks post radiotherapy and I'm tired still no taste, and still dry mouth,
I won't know if it's worked until I have a scan in 4 months,
So it's a waiting game now.
How are you and what's your story
Maria
Hi Maria
Thank you.
I'm sorry to hear the side effects from the radiotherapy. Sounds like a tough ride so far and I can appreciate waiting for the scans to happen must be terrifying.
I hope you're feeling better each day.
I was diagnosed with Adenoid Cystic carcinoma on the parotid gland yesterday after being diagnosed with Lymphomatic Malformation in March. Unfortunately the ultrasound team decided against a biopsy in November 2023 which would have helped. After the Lymphomatic Malformation diagnosis I was sent to a intraventional radiologist who thought that things didn't add up and requested the biopsy a few weeks ago and I had an MRI and CT scan this week and diagnosed yesterday.
I've been preparing to live with the first diagnosis for months and to now find out it is far worse has broken me.
Trying to stay calm and use these forums to feel less alone.
Hi
So sorry, I don't know what this means for you,
I had a small lump in my neck in October 23 I was fast tracked to the ent unit, I had a biopsy but came back clear,
But they wanted to get it out asap, I had 4 cancelled appointments 3 of which I was gowned up,
Then they said they had a big meeting and now it had got to big and was wrapped tightly around my facial nerve, so they wouldn't operate because it would leave me badly deformed and they probably wouldn't get it all out,
So it's 6wks of intense radiotherapy, and that's it there's nothing else.
I feel so angry if they had taken it out last year then it would of been OK,
I hope yours is treatable
Maria
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