Salivary gland tumour help

[Newlywed84]

Anyone had a salivary gland tumour identified? Also known as the parotid gland?

If so, help! I'm awaiting biopsy results and I'm completely terrified.

Any info on what happens if it's bad, surgery experience - or any advice/experience would be so much appreciated.

I've had 2 relatives with parotid tumours.

If I remember from ENT training, almost 99% are benign called pleomorphic adenoma's, but your team will usually discuss having them removed as they can grow and press on the facial nerve, and a very small number can transform into something nastier.

One of my relatives had their's removed, left a large scar, but barely visible, as it was placed on his hairline. The other relative has left their's where it is.

Thank you so much for replying. That's reassuring to here, hope your relatives are well.

🙏🏻

Dentist here. I have sent a few patients in with lumps that turned out to be pleomorphic adenoma of the parotid.
Also my Dad had one.
All have been benign in my limited experience. All patients recovered swiftly and completely. My Dad had his blink reflex on that side affected for a while (facial nerve) but it came back.

Sorry to hear you have an anxious wait.

I had a parotid gland tumour back in my early 20s (over 30 years ago!). It was benign and I had it removed and haven't had any issues since.

I was left with a scar in front of my ear and down under my jaw line but to be honest it's not very noticeable, I guess it's hidden by my hair. One of my children noticed it when they were about 13! 😄

I remember before the op I was worried as they talked about possible damage to the facial nerve during the op. But the surgeon came to see me and said that was very rare. I'm sure now it is even more rare with more advanced surgery techniques.

Hope all goes well for you xx

Thank you, that's really reassuring. 🙏🏻

Thank you, this is really helpful 🙏🏻

The wait is the worst! I have now seen the surgeon and he discussed removal but wanted to await the biopsy result first - so fingers crossed that comes back quickly.

Glad you recovered well, and thanks for replying x

@Newlywed84 how are you now? I’ve just been diagnosed with the same thing and now got to wait a few weeks to have a biopsy, I’m terrified.

Hello, I'm okay thanks - I'm so sorry you are going through this! What stage are you at, lump found and waiting biopsy? Do you have one booked? I know it's terrifying but I promise The majority of these are benign (mine wasn't but I'm a rare and very unlikely case!). you can get some amazing info and support in two Facebook groups if that helps (parotid people and parotid gland tumor support group) . Heaps of info in there on biopsies, waiting for results, scans etc and also just general anxiety - both groups are amazing and I've made some great friends and had amazing support throughout my journey. You can ask questions and people are really
Helpful and responsive..I hope that helps.

My biopsy came back negative, I then had the surgery and found out four weeks later that the post surgery analysis confirmed it was in fact - rare form of cancer. I've recently finished six weeks of radiation to my head and neck and now recovering. The surgery itself was fine, the worst bits are the waiting for results. Happy to answer any questions - really hope you're okay 🙏🏻

@Newlywed84 thanks so much for answering me and I’m really sorry to hear about what you’ve been going through. Sending you lots of good wishes for your recovery 💐
I found a lump in my cheek a couple of years ago. I saw two GP’s, they both said it was a cyst and just to leave it. I never felt good about it but I’m so preoccupied with having a special needs child that I didn’t push anymore.
It seemed to become irritated at times so I eventually went back to the doctor and pushed for a referral. Finally saw an ENT who said it looks like a paratid tumour. She wanted me to have a biopsy straight away but there wasn’t an appointment for 3 weeks, so it’s just waiting now. It hasn’t grown in the years I’ve had it so I suppose that’s a good thing.
Thanks so much for sending those groups over, I’m feeling very alone and in despair really.

Hi, I have one of these. They said that on MRI imaging it looks benign and that they couldn't do a biopsy due to how deep in the lobe it is. I've opted for twice yearly monitoring as they said my op would be compex and risky due to where it is, but I'm a bit worried that I should just go for the operation since reading about your experience @Newlywed84 just incase! Hope you are doing ok now, could you tell us a bit more about the op? @Pollypocket51 how are you have you had your biopsy yet? X

@SandySquirrel2 sorry to hear you’re in this situation. How long have you had it?
I’m still waiting for my biopsy, it’s still over a week away and even longer until I get the results. The waiting is awful.

I've known about it a few months but they think judging by the size of it, it's been growing slowly there for years! It's behind my tonsil so only discovered due to an ENT referral for lots of sore throats. I hope you get your biopsy soon and that all is well, keep us updated x

Most people do seem to have them for years. At least they have said they will check on it regularly. Thank you ❤️I’ll keep this thread updated.

Hey everyone, sorry to hear you're going all through this. I'm also waiting on a scan to investigate a lump underneath the back of my jaw so I thought I'd pop in and say hi.

I noticed a lump back in May but thought it would just go down over time but it hasn't. I went to the Dr who gave me antibiotics but they didnt do anything for the lump. They referred me on the 2 week wait pathway and I've had an appt with an ENT. The ENT said the lump was on my submandibular gland. The lump is pretty small, marble sized, but I am worried about it. She said she didn't think it was anything to worry about which is something but Im not so sure.

I have an ultrasound scan booked in a couple of weeks to see what it is. Has anyone has a lump that has turned out NOT be a tumour?

I will also keep you all updated with my results.

Hi, sorry to hear you are also going through this uncertainty. I know how long that couple of weeks wait can feel. Definitely keep us updated. I think it can be lots of things, not always a tumour, and the fact that ENT werent too concerned is a good sign, as they know what they are looking for. Fingers crossed for you anyway. I'm waiting on my next MRI next week then I'll be back to joining the waiting game again x

Hope everyone is doing ok. I've had my MRI brought forward due to a lot of pain and swelling. Hoping its just a result of a recent virus and nothing to worry about

Not me, but my partner had a lump very close to there that turned out to be something related to an episode of glandular fever. Definitely not cancer. Hope all goes well on your scan.

@SandySquirrel2 hope you’re doing ok. At least they sound proactive bringing the MRI forward. Have you had the pain and swelling before?
I’ve had my FNA biopsy which was ok and not painful. I did come over very light headed though and had to lie down for a bit afterwards. My lump has been painful and swollen ever since.

Weirdly mine developed after glandular fever too! But they didn't seem to connect it when I told them at the hospital. Said it's likely a benign tumour but that its the type that can eventually turn cancerous if left in

I haven't had it this bad before and when I had it was before I knew there was a tumor there so I'm possibly just being hyper vigilant. They can't biopsy mine cos of where it is (really deep in lobe). I really hope you get some answers and good news soon x

@SandySquirrel2 Hope they get to the bottom of the pain and swelling, fingers crossed its just an infection which can be cleared up?

What's everyone got going on this week? I have my ultrasound scan on Weds. Anyone else with scans or getting results this week?

@Pollypocket51 hope your pain goes away soon as well. Hope you get your results soon.

I have another MRI this week which I'm not looking forward to! But I'm glad that they're being cautious. Will you get the results of your scan straight away? X

How's the pain now @SandySquirrel2? Any better? Good luck with the MRI!

I dont think I'll get any results tomorrow unfortunately. Just have to wait and see I suppose. Follow up appt with ENT is next week.

@SandySquirrel2 hope the pain and swelling has improved and @Lazysundayafternoon2024 hope you are doing ok.
I had the results of my FNA, it was suggested benign but also had some cells which looked like potentially something else, so they want to operate. I’m also getting an MRI this week so the surgeon can get a better look at it.