Deep Parotid Gland Tumor - 1 years since results and still not had a biopsy :(

So sorry I didn't reply to this at the time! How are you doing, you said 4 weeks so it must have been last week or this coming week? Sending all my best wishes to you x 

Hey, thanks for your message!

I have had the operation. Unfortunately there is some nerve weakness from where they had to pull the tumour away from around the nerve, but the nerve remained in tact so they’re confident the movement will return. Due to the size of the tumour, there is a fair loss of facial contour, so that will take time to get used to. It’s very early days so one day at a time. X

Oh well done, I'm so glad it's finally been done. But yes, do remember it is really really very early days, so try not to get too worried about what the 'end' result will be re weakness and contour c. I'd say my face is still changing now, 15 months after surgery. Things take time - but every day is a step forward. You've had major surgery so be really kind to yourself. Hopefully all you're hang to do is rest at the moment. If you have any questions at all about recovery then do just let me know - the hardest part is done now  

Sorry not sure where the random smileys came from - the one at the end was deliberate

Haha, I don’t know what all the faces were about either 

Starting to feel much more normal in myself now. Hoping to go for a short walk tomorrow! 

I have been back to hospital and had the stitches out. The wound itself seems to be healing well which is great.

I am being referred for facial physio, but when that will happen I’m not sure. He said it needs to calm down from the surgery first but that’s all he said  When did you start having your physio post-op?

Otherwise, apart from the facial weakness and my eye not blinking properly so being a bit sore, everything seems to be going well recovery wise so far, which is good. Bruising and swelling is all going down nicely and the feeling is gradually coming back in my cheek. It is a bit weird touching the numb parts of the face though, so I’m avoiding that as much as possible 

I’m looking forward to finishing the steroids next week though; I have been awake bang on 2am everyday for a couple of hours since starting to take them! I’m tapering the dose downwards now though until next week, so there’s light at the end of the tunnel.

He expects histology results by the end of this week so he said a phone call should be arranged in the next couple of weeks. I don’t want to sound ungrateful now the tumour has been removed, but the timescales to date have never been kept so I’m not expecting any change here unfortunately! 

How have you been getting on getting back into the swing of working post-treatment and post-maternity leave? x

Hi Loz12345  so good to hear from you! I’m so pleased that the surgery went well and you can now just hopefully focus on resting and recovering. As you said, one day at a time, and as  PS12s  said, the hardest part is done. <3

Fingers crossed for your histology results. Please keep us posted and I hope you enjoy your short walk out today, walking is so good for the mind and body. 

Unfortunately no real update from my end apart from that I am having a MRI with contrast on Saturday at Guys & St Thomas hospital and an appt has been booked for mid December time to discuss the results of it. Thankfully is has been booked on as urgent which I am relieved about as in my initial consultation, the consultant said that he doesn't think they will find anything to worry about… I am confused why they seem to have opted for surgery without hesitation for both of you and yet for me they seem to be very reluctant. I understand it is different for every patient and I can only guess that is because the lesion is in the deep lobe and not superficial lobe so harder to access. 

PS123  I hope your recovery is still gong well, as you say 15 months now.. amazing! And thank you for all of your support and tips over the last year. Both yourself and Loz12345  seem to be settled with partners and children who can be your biggest supporters and cheerleaders which in itself help to heal us in so many ways!  

Sending love and hugs to you both. 

Thank you ️

I’m so pleased there is now some movement in terms of scan and a planned date for the results. I know it makes it feel better to know the next steps and when they will be so you can plan and prepare and feel like you’re moving along. It’s such good news. The time will soon fly by, just like the whole of 2025!

Yes, I expect it is because it is in the deep lobe and the risks of surgery being greater. It’s a balance between risks I suppose, and they won’t want to risk permanent damage for something which may be fine to stay where it is. Hopefully the scan with contrast will give the best quality images and info to the doctors to plan next steps. Please keep us updated!

Nice to hear from you AnxiousEm92 , how was the MRI? Not too long to wait until your consultant appointment in the grand scheme of things, so that's good.

How are you doing Loz12345 ? Did histology come back? 

Hi PS123 

I’m doing ok thanks. I feel fine in myself now and out and about walking everyday. Also driving fine now. I’m being careful not to overdo it though, so I’m not thinking about the gym or running until early November, which would be the 5-6 week mark. I’m off medication now too save for eye drops and scar reduction cream I have started to use. I think there has been a little improvement on facial movement too, but still a long way to go. I have a few more days left on my sick note too which is definitely a good thing 

I haven’t heard anything from the hospital on histology or physio; think I would have been more shocked if I had tbh  I’m thinking if I hear nothing this week, I’ll email the nurse over the weekend to chase up. Now I’m off the steroids and the swelling and bruising has gone, I want to know when I should be starting physio, and if the NHS is delayed I may just have to find someone private. I have had a bit of a look around but there aren’t many local to me which seem to help with facial palsy as I assume it’s quite specialised. I know it’ll take time to get better, but I think I would feel better knowing that I am doing what I can do myself to help it along. 

Hi all,

I hope you’re all well.

Unfortunately, I am having to prepare myself for bad news. I had a call out of the blue today to book me in for a CT scan with contrast in a couple of days. I asked what it is for as ENT have not told me. She couldn’t tell me, but advised it was for temporal bones, chest and abdomen and it was my ENT surgeon who requested the scan. I have had an appointment with the ENT consultant through for early next week, face to face instead of a phone call which is how he told me I would next hear from him. I can only assume the tumour was not benign as thought and perhaps the scan is to check for spread. Neither he nor his secretary work today and the secretary I was spoke to told me she couldn’t help as she does not work for him and can’t access all systems he uses. So all pretty rubbish really.

I had kind of got myself to the stage of being comfortable that it was benign due to all the other previous tests, but now it’s like my world has been turned upside down. The fact it has taken so long to get to this point after my very first GP appointment over a year ago is playing on my mind. I have today off work by coincidence, and am just sat here physically shaking and i feel like I could be sick. I was hoping to see some light at the end of the tunnel after the surgery, but who knows now. Could it even have originated elsewhere? I am just completely lost. 

Sorry for waffling, it just helps to write it all down. x