Cancer in Parotid gland

Hi Waggers and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm not a member of this forum but noticed that no members had popped in yet. Responding to you will 'bump' your post back to the top of the discussion list again. I'm sure the members here will be happy to try and answer any questions you might have and to share experiences with you.

Wishing you all the best with your upcoming surgery.

Hi lovely, I also have this. I had my parotid tumor removed 15 weeks ago and have just had the pathology results back that is was cancerous. I’m now having CT MRI and ultrasounds to see if it hpread anywhere else. I had the lump for 4 years before it was finally scanned and they discovered it was a tumor ‍♀️ x

Hi

How are you doing? How have things progressed since your diagnosis and procedure? I hope things have improved for you in any way that is possible.

I've just been diagnosed yesterday after initially being diagnosed for Lymphomatic Malformation.

It's been terrifying.

How are you doing? How have things progressed since your diagnosis and procedure?

Have you found places of support to help you?

Praying for you.

Hi Waggers Chikinmoma Nik_M 

How are you all doing? I had surgery in June to remove what was believed to be a benign lump in my parotid gland, which then turned out to cancerous, so I was diagnosed late June with mucoepidermoid carcinoma. Lots of scans and appointments in the last couple of months, and I start 6.5 weeks of radiotherapy this week to ensure it's all removed (thankfully it hasn't spread). 

I am actually on maternity leave at the moment, due to go back to work in January but don't know how I'll be after the treatment and recovery etc. 

Would be great to keep up to date with all of your journeys too, sending lots of hope and patience to you all through this.

Hi! 
so I’ve had scans etc and luckily it hasn’t spread…. I’m having another ultrasound next month to see if it has started to grow back as they weren’t extinct be cancer so they only took a tiny margin around the tumor. They suggested taking the whole gland out in another op to ensure it doesn’t recur so that’s something to think about also. 
how are you doing in your journey? X

Hi

I'm sorry to read of your cancer.

I'm glad to read you've been through the surgery and starting treatment this week. Good luck, I hope it's successful.

My surgery is only on the 24th so I have an anxious wait until then. Only once they test it can they determine the radiation therapy approach. My CT scan showed something small and they won't know more until 6 months from now. I was meant to have a biopsy in Nov 23 but the radiologist decided against this (I'm so angry) and the intraventional radiologist requested this again in July 24. Each dr I spoke to I kept asking if this is cancer.

More than happy to keep you posted on my journey. I'm so scared but trying to come to terms. Hour by hour at the moment.

Trying to get a referral for a second opinion to the Christies foundation and paying to see other Doctors privately (can only afford the consultation) 

You're fully entitled to a second opinion so do get one and see what they say. Perhaps naively, before I was diagnosed I assumed it was quite a clear pathway of 'here's your diagnosis, so here is what we do', but have found it a lot more nuanced. Like Chikinmoma  said, they only had small margins so the possibility of another operation. My surgery resulted in good margins for the majority, but a small margin in one area by the facial nerve, so they didn't want to take more there - hence the radiotherapy. 

Anger is definitely an emotion I've felt at times, so don't be afraid to feel it, and I found the 'you have cancer' appointment completely overwhelming. Again since then I've learnt there's a whole spectrum of what that means, hopefully if they think it's small then that puts you at the lower end of the spectrum. Hour by hour is all you can do, so don't beat yourself up.

Any questions about the surgery just let us know, as it sounds like a couple of us here have been through it recently.

Thank you for replying. 

I've seen there is the NHS Christie foundation and you can get a referal for a second opinion from your GP. Going to reach out tomorrow morning for the referral. We've already emailed them. They also have some clinical trials and everyone online talks about Dr Robert Metcalf the oncologist so hoping we speak to him about the treatment along the way.

We've also found two surgeons who have 100% success rate against facial paralysis. Going to do a private appointment with them as well to get more information once I have all my scans and reports. Unfortunately I don't have private cover.

My wife also recorded the audio from the appointment and we've listened to that again which has helped a bit.

I just don't want to continue wallowing in self pity so trying to use the above to get my head straight and focussed and be prepared come surgery.

Also reached out to www.salivaryglandcancer.uk/ and speaking to someone this morning who has had ACC as well and her surgery was 12 years ago.

Mine is low grade / indolent so hopefully things will work out as ok as they can.

Still in a whirlwind of emotions. This is day 3 and I woke up better after speaking to family and friends. Not going to hide emotions need to feel it all and come to terms with the new norm and life path.

I never knew these forums could help someone feel like they're not alone.

Thank you all

It sounds like you're being proactive about your care which is great, hope it all goes well figuring out the next steps. I found once a plan was in place, it felt easier to get to grips with. You're still very early days (I was only diagnosed at the end of June, so not far ahead of you!). I don't know about you, but I didn't know you could get salivary gland cancer, had never heard of the parotid gland, before all this - so it's a huge amount to take on. One step at a time for all of us!

I'm sorry to hear of your diagnosis. Have you had any surgery or treatment yet (if you don't mind me asking?). Definitely hadn't heard of it until the lymphatic malformation diagnosis and unfortunately then realised cancer happens as well.

Yeah have managed to formulate some sort of plan for myself ahead of the surgery and going for an independent 2nd opinion on Thursday. Not looking to change surgeon etc. I want to ask questions and understand a few things from an independent review.

As you know, when you're getting the news your mind is all over the place and you can't take it all in. Plus there is no harm at all in getting more info from a professional looking and reviewing the history.

Feel free to message if you need to chat or vent.

Have you seen anything on the Christie clinic and the work being done by Dr Robert Metcalf?