Hello Jools and welcome to the Cancer Chat community.

I'm really glad to hear you're recovering well from your parotidectomy and I'm sure any members who are due to have this surgery will definitely take you up on your very kind offer :)

Do feel free to impart your wisdom on any discussions you find about this when using the 'search forum' option in the purple bar above.

If you have any questions during the rest of your recovery, you're welcome to give our team of cancer nurses a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

Kind regards,

Steph, Cancer Chat Moderator

I have had this operation twice and remember that there was very little information available when I was looking for some reassurance.

I can confirm that I was left with a very slight numbness around my right ear, cheek and neck.I'm not aware of it most of the time but in cold weather ( now!) it can ache a bit.

The first proceedure I had was very neat and involved pulling my ear back so nothing was noticeable on my neck. However, the second time I had a large scar on my neck which concerned me. However, it healed so quickly and within a few weeks it wasn't noticeable at all. This was all a few years ago now  and there is no visible scarring at all.

On both occasions I was still working and was back at work within 2 weeks despite having an infection after the first proceedure.

Hello,

I had a small lump on my neck below my jaw. You couldn't see it but I knew it was there. It didn't cause me any problems but after a while I did go to my GP as my sister had been diagnosed with thyroid cancer several years previously following similar symptoms.

I was immediately referred to an ENT specialist  and after a consultation and 2 different types of scan I then had my first surgery.The consultant told me that these type of lumps quite often come back and sure enough about a year later I was back having a further operation.Neither of these lumps were found to be cancerous and hopefully you will get similar news shortly.

Both my sister ( who had her thyroid remved) and myself have been well since then

i

Hi Keltburn, how did everything go?

Hi jools I hope all is well with yourself thank you for asking how it went, I had my ultrasound scan and when I phoned the doctors for results the receptionist told me it came back normal so I'm happy but also feel like I'm going mad as my side of the neck is definitely bigger than the other side not a hard noticeable lump per say but swelling. Just makes me not want to go to the doctors anymore as just feel like their looking at me like I'm crazy now.  Just have to live with whatever is causing it or maybe it's just a fatty area on my neck who knows .  Best wishes to you

Ah ok, yes I cam understand your concern. My whole issue started off with swelling & they thought it was an infection, but it didn't really go down, hence the ultrasound, but they do say an MRI gets a closer look at what can be underlying. My tumour was so deep that the surgeon said he couldn't even feel it when I was asleep, but it did show up on the ultrasound. I would see how you are in a month or two & maybe go back if it's still bothering you. Hope you manage to find the strength to overcome it x

Hi Jools

Your comment about the tumour being difficult to detect is interesting.

In the initial stages I could feel it, if I pressed hard with my finger about the size of a pea. But the ultrasound could not pick it up. The doctor could not feel it either and said that I had the benefit of being able to feel it from both the inside and the outside via my finger. A few months later I got an MRI scan which did pick it up as it had grown, but by the time I was operated on another 2 months after the scan I was feeling quite ill, it hurt and was the size of a golf ball.

That was 5 years ago and Ive been quite healthy since then. Like everyone else on this forum who has had cancer there is always that slight worry at the back of your mind that it will recur at some point.

Couldn't agree with you more. My consultant did say that the tumour would likely return, but in 8/9 years time, but you can't help thinking 'what if it's sooner.' Keeping sane, remaining positive & being as healthy as possible, I think is all one can do x

Hi Jools

Did you have a course of radiotherapy in addition to surgery?

Hi, no absolutely nothing else as it was benign & all removed. As I've lost volume in that area, so the consultant said to just keep feeling the area.x

Sounds like you are making a good recovery. Keep healthy

Hi Keltum, I also have a bit of swelling undernetah the left side of my chin/neck. And this is 7 months post Op. Just want to add a side thing incase anyone else has this worry - It was actually only about 2 months ago (5 months post op) where I actually realised I had gunky stuff behind my ear, and I was scared to do anything about it. It was sort of stuck to the skin so was unsure and uncomfortable removing it incase it was somehow connected to the inside of my head haha. But one day I just went for it, scratched it off, and I haven't had anything there since. I think it may have been from the first 2 weeks after my Op where I didn't wash and was super paranoid about touching around that area behind my left ear. But yeah it's been 2 months since I removed the stuff and I haven't had anything since. 

I still have a sharp, basically unbearable pain when I attempt to shave on the lower left side of my cheek. I just feel so many nerves activating just from touching it, and then sharp pain when I apply pressure with the razor. I've tried electric and I feel like it's the same issue and I rarely get any facial hair removed in that spot with an electric razor. But when I use a normal razor it's still painful obviously but after some time I manage to shave most of the facial hair off. I think that's basically the only thing that's effecting my day to day life really. I mean, there's not a minute I'm not concious about something or someone touching my face near the sensitive area, but I'm lucky not to have Freys syndrome (As I thought I did in the first few weeks after the OP), and no other side effects, it's basically just the shaving and the slight swelling that is noticable. Other than that I'm good... I can't lie though, I really really wish there was something that could be done about the electric/nerve/pain feeling on my lower left cheek..

A seperate thing I've been looking at for years now has been getting basically new teeth, but I'm really concerned that if I was to get veneers etc that the dental surgeons (whatever they're called haha) will need to touch the side of my face etc, and so there's things like that I'm overthinking. 

I'm incredibly greatful that my problems after post op are what they are because I acknowledge some of you are dealing with alot worse and have more to overcome. But I just wanted to share my thoughts somewhere so I hope I don't offend anybody when I share my personal concerns/feelings, because I fully appreciate they aren't that much of a big deal in the wider scheme of things.

Hi Keltum, I also have a bit of swelling undernetah the left side of my chin/neck. And this is 7 months post Op. Just want to add a side thing incase anyone else has this worry - It was actually only about 2 months ago (5 months post op) where I actually realised I had gunky stuff behind my ear, and I was scared to do anything about it. It was sort of stuck to the skin so was unsure and uncomfortable removing it incase it was somehow connected to the inside of my head haha. But one day I just went for it, scratched it off, and I haven't had anything there since. I think it may have been from the first 2 weeks after my Op where I didn't wash and was super paranoid about touching around that area behind my left ear. But yeah it's been 2 months since I removed the stuff and I haven't had anything since. 

I still have a sharp, basically unbearable pain when I attempt to shave on the lower left side of my cheek. I just feel so many nerves activating just from touching it, and then sharp pain when I apply pressure with the razor. I've tried electric and I feel like it's the same issue and I rarely get any facial hair removed in that spot with an electric razor. But when I use a normal razor it's still painful obviously but after some time I manage to shave most of the facial hair off. I think that's basically the only thing that's effecting my day to day life really. I mean, there's not a minute I'm not concious about something or someone touching my face near the sensitive area, but I'm lucky not to have Freys syndrome (As I thought I did in the first few weeks after the OP), and no other side effects, it's basically just the shaving and the slight swelling that is noticable. Other than that I'm good... I can't lie though, I really really wish there was something that could be done about the electric/nerve/pain feeling on my lower left cheek..

A seperate thing I've been looking at for years now has been getting basically new teeth, but I'm really concerned that if I was to get veneers etc that the dental surgeons (whatever they're called haha) will need to touch the side of my face etc, and so there's things like that I'm overthinking. 

I'm incredibly greatful that my problems after post op are what they are because I acknowledge some of you are dealing with alot worse and have more to overcome. But I just wanted to share my thoughts somewhere so I hope I don't offend anybody when I share my personal concerns/feelings, because I fully appreciate they aren't that much of a big deal in the wider scheme of things.

Could I ask anyone on here some questions on here.

 I've had pleomorphic adenoma for over 6 years but just had diagnosed recently , I've had biopsy , mri and am booked for partial parotidectomey. My tumour is suggestive benign but can't confirm till tested.

I don't know that surgery is the best option yet although I've signed for it. I am very scared . I'm scared of the healing process involved and fearful it cancerous. 

Would you recommend surgery after all side effects    .also would you do anything differently operation ,treaent wise. 

My tumour is growing at side and above my facial nerve and I believe this is worst type of surgery to perform when close to facial nerve. I had bells palsy so already suffered drooping on 1 side for months as teenager. 

Sorry so many questions but everyone's experiences different and I feel it important to have my eyes open wide , to walk in prepared with a good understanding from.a patients perspective not a Dr's that may not have the personal experience. and am worried about everything all at once