Hello! 34 year old woman diagnosed with Acinic Cell Cancer looking for support

Hi Sophie and welcome to our community. So sorry you have found us here but there are lots of helpful members to help you through what might happen so stick with us. 
I’ve done a search here for you so you could start here 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum

Best of luck 

Hello, I too was diagnosed with Acinic Cell cancer almost a year ago.
I had a superficial parotidectomy and no further treatment, just three monthly checks and regular MRI's.
It's a very scary time, especially as it is so rare and there isn't much info out there about it.

If there is anything you would like to ask or talk about, I will be happy to help where I can.

Ally x

I was also the same - diagnosed December 2020 (what a fun year hey!)

I am the same treatment as you now Bongo123 so regular checks and 6 monthly MRIs. How have you both been since your operations? I’m physically well but it’s such a mental challenge or so I find.

more than happy to reach out and offer support as much as poss to you both. We’re members of a very rare club! X

Hi there Lu123, nice to hear from a fellow Acinic Cell club member, not that it’s a club we would choose to join!!

I am now just over a year after surgery and have an MRI coming up in December.

so far so good, though the tumour was growing in between the branches of my facial nerve so have still got some nerve damage to my eye which means I can’t move my eyebrow. Hardly anything to complain about really all things considered.

I do have numbness still down one side of my face which seems to cause all sorts of weird sensations. 
Mentally, I’m pretty ok now but it’s taken me a while to get to this point. There is so much uncertainty about it coming back which is a bit worrying. I try not to think about it.

Always happy to chat and offer support where I can if you need to offload.

ally x

Hi guys,

Thanks so much for coming back to me! Sorry I initially missed your message two months ago. 

It’s so nice to connect with other people who have my cancer. At Northwick Park Hospital in London, where I received my treatment, I was the first patient with the disease that the speech therapist had seen and she’d been at the hospital for a year and a half.

I actually think I’ve had the cancer for many years. I remember in my late twenties noticing a small bump on the roof of my mouth which was soft at the time. I was regularly going to the dentist as I had trouble with a top tooth, and no one spotted it / asked what it was. I therefore thought it was harmless. 

And then about two years ago, I popped to the dentist and they flagged the bump to me - by which time it had turned red and hard. They initially thought it was associated with the same tooth which was causing me trouble those years before, so I had a root canal and eventually the tooth removed. However, the bump was still there six months after the tooth removal. 

So I was referred to the NHS but the pandemic hit and everything was severely delayed. After about 1.5 years, I went in for an op to remove what they thought was a cyst. However, the biopsy came black as cancer. 

I then went for additional surgery to remove any margins and was told they removed the tumour in the first surgery. I was stage 1 and very lucky. 

Did they remove your bone at all? They kept mine in. I’m going for check ups every 6 weeks however no scans promised. Apparently they will not be be needed however I’m obviously hesitant about not having them. 

Luckily I took out health insurance a few years ago and when they hopefully pay out I’m going to stick it into a separate account to pay privately for scans. 

What stage were you? I totally get your point on the mental side of things - I’m really scared about it coming back and my surgeon has advised that I lay off alcohol. I’m a sociable person and have a job in the media, so doing so has been tricky. Even yesterday I had to leave a client dinner early as knew it would end up alcohol heavy the later it got. 

Have you been given any additional advice from your surgeons on how to protect yourself? 

Again, really good to connect with others who are experiencing the same thing as me. 

Sophie x 

It’s really rare to find other people who have it so I always try and reach out when I see people that do as I know we will understand how the other feels.
I think I am due my next MRI in November, my first post op one was all clear back in May.  
do you mind me asking how old you were when diagnosed? I was 31 but the lump had been there for years, I went to the GP who said it was a cyst. I only pushed for another diagnosis when it started to grow, and only found it was cancer after my op. A bit of a shock to say the least! How did you come about your diagnosis?
I think that’s what I’m struggling with, the thought that it may come back and all the uncertainty. Most days are good but some days I really struggle with it but I suppose that’s kind of normal?! Physically I am well, still numb on the side of my face but have full movement which I am so grateful for.
lovely to hear back from you, Laura xx

Hi Sophie

i think I’d also had mine for many years. Mine was a hard lump in front of my right ear that began to grow and diagnosed on removal. So sounds like yours was in a different place to mine, mine was on the parotid gland.

mine was quite a large lump, but was luckily removed with a small but clear margin. They did say they couldn’t have asked for better as the lump was large and the area they were dealing with doesn’t really allow for large margins! I don’t know what stage mine was, I don’t know if it’s normal but they didn’t tell me and I haven’t wanted to ask (sounds bizarre but I think I’d worry more - I have the tendency to google and we all know that’s the worst thing to do ). When I was diagnosed in Dec 20 I had an immediate MRI and CT and thankfully both came back clear. 

I haven’t really been advised to avoid anything, they were surprised when it turned out to be what it is though. They’ve just said for me to kind of self monitor a bit and let them know about any pain or any lumps that I find, but I am also having 6 monthly MRIs for 5 years at least and then annually after that for the rest of my life. I understand your concerns about not being offered scans - have you raised this with your hospital? My consultants have been fab - I’m being looked after by ENT at Royal Stoke. I think it’s just such a shock at a young age and a hard thing to come to terms with. Laura Xx 

Hi Sophie, 

you’re not the first person I’ve spoken to who found out it was cancer after surgery. I was totally floored when I got my diagnosis as like you, I was told it was a dental issue by the radiographer who did the ultrasound. I had been having dental problems with my back lower teeth for over a year and then a lump appeared behind my ear. My referral was delayed too because of the pandemic.

The lump was very painful which just goes to prove not all cancerous lumps are painless. Even the radiographer said it was unlikely to be cancer for that reason!! Anyway she took a biopsy which came back as Acinic cell. I’d never even heard of salivary gland cancer.

I was stage 1 low/intermediate grade with close margins. The tumour had grown in between the branches of my facial nerve so part of my deep lobe was also removed. There is now a lovely dent on that side of my face - first time I’ve had a jawline in years haha.

I’m in my fifties so quite a bit older than you girls and I feel bad that you are going through this at such a young age. Unfortunately cancer doesn’t care how old you are does it.

 I haven’t been told to avoid alcohol so that’s a new one on me - thank goodness cos I like a nice G&T now and again

I also think you are wise to have regular MRI’s and I’m surprised they haven’t put you forward for them. I would challenge it personally.

ally x

p.s I was at Brighton x

I think it’s understandable to worry about it coming back. I was paranoid it had got into my nerve because of where it was located but they tell me it didn’t. Then I panicked because it was twice the size they thought it was on removal but it’s probably because of the way it was lying.

I do get nerve pain now around my eye but I think it is because the nerve is coming back to normal or at least I hope so. Try as might I just can’t get that pesky eyebrow to move

When I think about it I had been having pain in my jaw for three or so years before I noticed the lump but on mentioning it to my Dr and dentist it was disregarded!

Do you have any discomfort around your scar? I get occasional ear ache and pain around that area. I guess the scan will pick up anything dodgy.

Again, I’m quite a bit older than you and am sorry that you have to deal with this at such a young age but the doctors will monitor you and I’m sure you’ll be just fine.

ally x

I don’t really get much discomfort around it, it’s finally settling down and not quite so red now. I do have a nice side effect of my cheek and jaw occasionally sweating when I eat. They said it’s very common following the surgery I think it’s called Frey’s syndrome. It’s not too bad but not the most pleasant thing either! I did have a period of having a bit of earache but I wonder if that’s just down to the nerves and things settling back down after the op.
my lump was also quite large when they removed it but as you say I think it’s hard for them to tell until it’s removed.

I get anxious around the time of scans but that’s normal I’m hoping as time goes on and the more I have the less I’ll feel that way but we will see! Laura xx