Hi Tracey,

Just wondered how you got on with your MRI?

I had a superficial parotidectomy last month and also told no further treatment necessary. Just check ups every six week and regular scans.

Still got a lot of numbness in my face and a wonky mouth and eye.

Its very scary after surgery is over, wondering if it will come back. There aren't many people who have this type of cancer which leaves me feeling a lttle bit isolated. Have you managed to get over your fears yet?

Ally.

Hi there,

Thanks for the message.

I am still waiting for my second MRI scan, it's been delayed due to COVID. 
 

I usually get monitored every 3 months by just seeing my surgeon. He has phoned me through lock down to check in with me. 
 

The side of my face in front of my ear has never come fully back to normal but can cope with that. I have feeling in my ear lobe which they thought I wouldn't have so that's good. Your mouth will come back in time a lot of nerves would of been damaged and they take time to heal. Can take as long as 2 years to fully settle. I never had issues with my eye but I am sure it will come back too. 
 

Unfortunately, I am still struggling with ever having this.  I can't stop thinking it will come back or that's it's still there, but I am never the positive of people. 
 

Thanks,

Tracey

Hi Jolamine,

Thank you for your message, apologies for the late response.

I'm sorry to hear that you cancer journey has been so challenging, but you are quite right about not letting the negative feelings take over. I am trying hard to stay positive and start looking ahead and am gradually feeling a bit more like my old self (or something like it anyway).

It doesn't help that the type of cancer that I (and Tracey) have is pretty rare and so there aren't many, if any, support groups out there for us. I just rely on medical journals online which can be very alarming when you don't understand the terminology used!!

I will look into the 'Moving Forward' course and see what its about.

Thanks again for your message.

Ally x

Hi Ally,

Only 1% of people get my type of breasst cancer, so I know the problems of trying to get information for a rare tpe of cancer only too well. Have you tried looking at other respected cancer sites, instead of online medical journals?  I got most of my initial information from the American Association for Cancer Research and, although some of their testing and treatments vary slightly from ours, they had far more information than I could get in the UK.

I hope that this helps and please try the 'Moving Forward' courses, as they do make a difference.

Kind regards,

Jolamine xx

Hi Tracey

i have been diagnosed with the same as you and found it in the same way (thought it was benign and got a call yesterday to say otherwise and my world has just imploded)

I have sent you a friend request on here I was wondering if we could chat about your experience and mine? I knows it's a very rare cancer.

I am 31 and had my lump removed 2/11/20, they were pretty sure it was benign but histology found otherwise. I am due a CT and MRI in the next few weeks but they think the whole thing is out and like you and ally they are suggesting monitoring me with regular mri scans for the next 5 years rather than surgery or radiotherapy at this stage 

would love to talk to anyone with the same thing going on I'm feeling scared and like it's happening to hardly anyone else

Laura x

Hi Laura,

So sorry for the huge late reply.  I never got a notification about your post. 
 

Of course I would be happy to chat to you.  What would you like to know? 
 

It is hard to think it was benign and then it turns out not to be, it's horrible. 
 

How did your scans go? 
 

Speak soon

Tracey xx

Hi Ally,

Hope you are well. I just wanted to check in and see how things are with you following your op last year?

Tracey x

Hi Tracey 

Hope you're well and thanks for getting back to me. 
The scans went well both my MRI and CT were clear thankfully. I'll now meet with my consultant every 3 months and have an MRI every 6 months so my next scan will be July time.

I was just wondering how you've been since your diagnosis? How have you found everything? Physically I'm well and had no side effects from the op other than some numbness on the side of my face. It's the mental and emotional side i struggle with a lot and can't help but worry it will come back. 
Look forward to hearing from you

Laura x

Hi Tracey,

nice to hear from you.

I'm doing OK at the moment. Had an MRI in December which was clear and consultant said it was very reassuring.

still numb on left side and can't move my eyebrow - looks like I've had Botox on one side of my face

Stitches feel very tight and are a bit uncomfortable but everyone says I look normal so that's a bonus haha.

Are you still struggling with thoughts of it returning? I go through stages of anxiety but I expect it's quite normal to feel like that.

Ally xx

Hi Ally

hope you don't mind me replying to you also! It's so rare to find people with the same cancer so it's nice to have people who really understand. 
I have the same as you re thoughts and anxiety, I've been ok a lot of the time but sometimes I feel so overwhelmed by it. I need to remember I only found out about all this in December 2020 after thinking for all the time prior it was a benign lump. 
I have a call with a wellbeing coach from MacMillan this week who offer 6 sessions, I'm hoping that will help me. Have you looked into doing anything like that? 
I'm due my first follow up meeting with my consultant in the next month or so and then my first MRI scan 3 months after that. Do you mind me asking how old you were at diagnosis?

hope to hear from you soon

Laura xx

Hello Laura,

Nice to hear from you.

I just wrote a great long message back to you and i seem to have lost it so here goes again haha.

Sorry to hear you are going through the same thing as Tracey and I and you are right about talking to people who understand. Its such a rare cancer and googling it is not a good idea but we are probably all guilty of doing it.

I found out about my tumour last August and had the op in September so I'm six months further on now. I do get anxious about it as times as I feel nobody (that I know) can appreciate what a traumatic experience it was. Lets face it, having your face cut open with all that entails, then the nerve damage, the knowledge that it could recurr....

I still can't feel the left side of my face or my ear. My mouth has improved but I can't move my left eye (blinking is fine) as in raising my eyebrow. It feels very bruised along the eye and brow up onto my forehead but I think that may be the nerves trying to regenerate.

At the moment I have a problem with my left eye and i worry it is somehow connected.

To be honest, i haven't really done anything about the anxiety. The first time i tried to contact the MacMillan nurse at the hospital I didn't get a response and thought maybe there were people more in need of help than me. I don't want people to get fed up with me going on about it all the time so I mostly just get on with it.

By the way, I'm 58 so most likely a good bit older than you and Tracey.

Always happy to chat if you want to get anything off your chest.

Ally xx

Hi Laura,

I'm good thanks. No problem at all, it helps to have others to talk to. I'm so pleased for you that the scans went well. MRI's are the worst.  I'm meeting with my consultant every 3 months also. I don't get another scan for 2 years supposed to be but think will ask for one a year down the line. 
 

I'll be honest it has been up and down for me.  I think I can't accept it happened to me being so young. Like why me.  I can't fault my consultant and surgeon, I have both due to covid. My surgeon is too busy with surgery for consultations but both are amazing. The only side effect I had aftwr surgery was it kept filling up with salvia which can happen apparently. That stopped a few months after. Unfortunately my MRI scan is still showing highlighted area but they are saying that is post op changes rather than cancer. I just hope they are right. 
 

I struggle hugely mentally because of it and covid is not helping. I do really think it takes time to get over the whole thing and there will always be the feelings of what if it comes back but the longer time passes with good follow up appointments and scans the thoughts will fade.

Tracey xx 

Hi Laura,

I'm good thanks. No problem at all, it helps to have others to talk to. I'm so pleased for you that the scans went well. MRI's are the worst.  I'm meeting with my consultant every 3 months also. I don't get another scan for 2 years supposed to be but think will ask for one a year down the line. 
 

I'll be honest it has been up and down for me.  I think I can't accept it happened to me being so young. Like why me.  I can't fault my consultant and surgeon, I have both due to covid. My surgeon is too busy with surgery for consultations but both are amazing. The only side effect I had aftwr surgery was it kept filling up with salvia which can happen apparently. That stopped a few months after. Unfortunately my MRI scan is still showing highlighted area but they are saying that is post op changes rather than cancer. I just hope they are right. 
 

I struggle hugely mentally because of it and covid is not helping. I do really think it takes time to get over the whole thing and there will always be the feelings of what if it comes back but the longer time passes with good follow up appointments and scans the thoughts will fade.

Tracey xx