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

If it's any consolation I am the same. My tumour turned out to be 4mm larger than the scans indicated which freaked me out, and also it was lying across the main facial nerve, hence the nerve damage affecting my eye.

Im convinced they are not telling me the full story but people keep telling me they wouldn't do that and that I would be having radiotherapy if they thought I needed it.

Its nice to finally find someone going through the same thing - do let me know how you're MRI goes, I'm sure it will be fine.

Ally

Hi Ally,

I'm pretty sure it's more than there job is worth to lie. When I met with the oncologist he didn't advise radiotherapy but I thought they would of as my margin was a very small one due to the main facial nerve.

When the mri previously showed the highlighted area they had an MDT meeting and discussed my case and they all said they had no concerns but I can't help think it's bad all the time. 
 

I assume you didn't require further treatment? Did they say how clear your margin was?

The world is such a cruel place sometimes. 
 

Tracey x

I got my results from the registrar who was very vague about it all. I did ask if my margins were good and he said they were within the limit! What does that mean?

Lymph nodes were clear.

I asked what chance there was of a recurrence and he said everyone is diffferent!

Apparently my MDT lot said the same as yours. No further treatment.
When I had the op, the consultant said it would take about an hour and a half - it ended up taking four and a half hours! Nothing has been straightforward. Typical of my luck.

To be fair, they will be keeping a close eye on me which is reassuring but I really don't want to go through this op again.

I was T1N0M0 which is a good sign I hope. What about you?

Allyx

I didn't find out the beast way as my surgeon thought he was removing a benign tumour. Thankfully he removed the close 2 lymph nodes nearby which were also clear. I just received a letter from the hospital saying I had an appointment with an oncologist. It was awful. 
 

My surgeon has been amazing, has always said positive news but I just am struggling to believe my next scan will be ok. I don't want to go through this again. 
 

Sometimes it's just not great they way they tell you things.
 

Mines was a PT1 in the pathologist report. Which is stage one and was told it hadn't extended in to healthy tissue and clear lymph nodes. 
 

I am supposed to be monitored by my surgeon every 3/4 months, but with COVID not been in to see him since February. 
 

Tracey x

I didn't find out the beast way as my surgeon thought he was removing a benign tumour. Thankfully he removed the close 2 lymph nodes nearby which were also clear. I just received a letter from the hospital saying I had an appointment with an oncologist. It was awful. 
 

My surgeon has been amazing, has always said positive news but I just am struggling to believe my next scan will be ok. I don't want to go through this again. 
 

Sometimes it's just not great they way they tell you things.
 

Mines was a PT1 in the pathologist report. Which is stage one and was told it hadn't extended in to healthy tissue and clear lymph nodes. 
 

I am supposed to be monitored by my surgeon every 3/4 months, but with COVID not been in to see him since February. 
 

Tracey x

That must have been a terrible shock for you!

Isnt it awful how the words 'you have cancer' can change your life in an instant. 
I wonder if I will ever again be the person I was before this.

To be honest, your situation sounds positive to me.

In my case, I will push for more information on my next check up as I feel like I don't know the full picture.

One more question, how long did it take for the swelling to go down on your face? It's been five eeeks for me but I'm still puffy?

You can always message me if you want to sound off or have a wobble.

Ally x

Yeah I was devastated. I thought that was it, I was going to die. 
 

I know it really changes you as a person. I do wonder if with time it gets easier. Still feels fresh for me and I'm a year and a bit on.

It does sound positive I know that but I can't get my brain to believe it. I feel like I'm not lucky enough to get though this. 
 

Of course, it took quite a few weeks for me, but I had complications after surgery as mine kept filling up

with saliva and had to be drained 3 times. Was a nightmare but eventually it stopped doing that. 
 

Mines has taken a long time to be a new normal and I still get niggles with it now and then. My scar is quite a neat one but it's quite tight too. You Might be left with some bits that are a numbish moving forwards but I guess it's not suprising the amount of nerves that are cut I guess. I was 2 hours in surgery. 
 

Thanks for that, same to you.  I have tried CBT and spoke to a cancer councillor but they can't tell me the news I want to hear so they struggle to help me deal with my emotions. Where are you from? I am glad to hear they are still treating people under COVID as the news does not put that across. You only hear the bad stuff on there. 
 

Tracey x

Filling up with saliva - that doesn't sound very pleasant!

Glad they sorted that out for you.

I live near Chichester so had my op at a hospital in Brighton. They were very good, my surgeon is a specialist in head and neck cancer so I was in good hands.

I know what you mean about feeling tight, even though I don't have much feeling there I'm starting to get pain which could be where it's healing.

Im just trying to focus on the positive but its still early days for me and I think I'm just going through all the normal emotions so I'm praying I will find my real personality again. People think now it's over that I should be happy and get back to normal - easier said than done.

Try to stay positive, don't let the cancer rule your life if you can help it.

Ally x

Hi Tracey and Ally,

I am so sorry to hear of your uncertainties re-recurrence. Sadly, this is something that anyone with a cancer diagnosis has to learn to live with.

I have had two bouts of breast cancer in the past 11 years and, more complications than I care to mention. I felt exactly as both of you to start with, but have changed my outlook over time. The main reason for this is that I have discovered just how helpful positivity is to our cancer outlook. I decided that I could let fear of recurrence take over my life, or I could refuse to let that happen and live my life to the full.

My life will never be the same as it was pre-cancer, but I live a fairly full life. I do still worry about recurrence, as this has already happened to me once, but life is too short to let this fear take over.

Your surgeons would certainly never continue to monitor you without treatment, unless they were sure that you are both doing well. Living in such a litiguous world they would never get away with telling anything but the truth. In my expeerience, they tend to be very open when discussing the course of this disease - if anything too blunt at times.

I hope that you both continue to do well and that you will in time learn to put this fear to the back of your mind, instead of letting it become an all consuming worry.

As an aside, have either of you attended a 'Moving Forward' course? These can be very useful in helping us to get our lives back on track following all that we've been through.

Kind regards,

Jolamine xx

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