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

Yes it is rare - I struggled to find much information/people's experiences etc when first diagnosed. I feel for you both as know to some extent what you're going through (my lump was obvious but there was a lot of back and forth about what the scans etc were showing). Really hope you both get some definite answers soon and that those answers are benign. I'm so surprised to find two people of similar age on here going through something similar, sending you both my love and thoughts! Philippa 

I had my ultrasound and FNA today. Whilst the consultant can’t obviously say 100% without the FNA results, he told me that he thinks it is a benign tumour, a pleomorphic adenoma, and that “it’s nothing to worry about long term”. Whilst it’s not conclusive, the fact he even said that at all means he must have some confidence in what he saying. So whilst the waiting continues, it has given me some comfort to try to get through the remaining weeks until the MRI is also done and I see the ENT consultant again. FNA results should take a week, but I expect the ENT consultant will want all results before I see them again.  

I was however expecting a local anaesthetic, which I didn’t get, so the lump is now going to be quite sore for the next few days I think! If it is found to be benign, I’ll happily accept it!

So pleased for you, that sounds like a positive step today and a bit of relief! When is your MRI? Yes, all the paperwork for my FNAs said I'd have a local anaesthetic but then the consultant said they didn't tend to - felt fairly bruised/punched for a day or so but it quickly subsided so hopefully yours does too! 

Whilst I know it isn’t conclusive, it has definitely made me feel a bit more positive about it all!

Still haven’t had the MRI appointment. 17 days and counting! I’ll be chasing again tomorrow afternoon if I don’t hear anything in the morning.

It really is quite painful tonight. I’ve taken paracetamol and ibuprofen and it’s still quite uncomfortable. I’m hoping to be able to get some sleep tonight and for it to be a bit better in the morning 

You've done the right thing taking paracetamol/ibuprofen, and you might find lying on that side in bed is too uncomfortable tonight (it might have been anyway with the lump) but it should quickly heal

Hi Loz.. ah thank you for the update.. That is such positive news!  I’m so pleased he could feel confident enough to tell you that he thinks It is benign and that it isn’t something you need to worry about long term and assuming that would also mean you wouldn’t need surgery to remove it which is a huge plus as our parotid gland is very close to the main facial nerve so surgery could mean a chance of facial paralysis. ( I have spent many an hour on google..) that does give me hope though as even though I get pain in the neck and face at times it may not necessarily mean it’s malignant but I know every case is different. I will keep everything crossed for your fna results. I know how nerve wracking it feels waiting for results but just know it’s all temporary and this too shall pass..  

On my end, I have requested a second opinion from the royal London hospital where I have been due to receive tooth implants under the nhs since I have severe hypodontia but everything has been halted since Oct last year because of this lesion. I have been going up there to try and get things moving and I am back there again on Thursday to give them copies of my mri scan and letters which outline where the worrying lesion is and the 3 other lesions they found so I’m hoping they will pass it onto the max fax department who can take a look but likely won’t hear anything until the new year.. if there is one thing this year has taught me about the nhs system is that you just have to be persistent and keep pushing for movement and action but I’m so glad they could carry out the fna successfully for you and everything crossed for good positive outcome   

Hi Philippa, thank you for reaching out.. I really relate to your experience with the back and forth.. did you receive a biopsy and a final diagnosis? Did you have any symptoms? The specialist at Broomfield hosp in chelmsford, which is where I am currently being seen, said that they held an MDA meeting for my mri scan and no one could come to a conclusive answer but the radiologist who I have been under said that he THINKS it MIGHT be normal tissue.. which of course is reassuring is some way but in another it feels like a guessing game since they haven’t carried out a biopsy.. feeling better knowing I’m not alone with this anymore! ️ 

AnxiousEm92 said:

no one could come to a conclusive answer but the radiologist who I have been under said that he THINKS it MIGHT be normal tissue.. which of course is reassuring is some way but in another it feels like a guessing game since they haven’t carried out a biopsy.

Biopsy gives the definitive answer. I would be insisting on one if there is even a slight chance it could be cancer

Thank you! The ENT consultant said surgery in my initial consultation without knowing what it is, so I think whether it is benign or not surgery is likely. Even if benign, I wouldn’t want to risk it keeping growing and making surgery more difficult. Hopefully when the results come through I can have a proper informative conversation with the ENT consultant. He mentioned the nerve when I saw him, but as surgery will be the only option to remove it then so be it! 

Well done on getting through to someone for a second opinion. Thats great news! I expect that has helped to make you feel a little calmer about everything. I agree, the only way is to keep pushing and be quite firm and insistent. At least with your second opinion you will have the time to think about what to say and what to ask based on things to date. A great step in the right direction!

Did you see Fearne Cotton announcing her benign tumours yesterday? The irony of time timing of that when we are on this forum wasn’t lost on me! 

 AnxiousEm92 so it turned out eventually that I had both a tumour and a cyst that were attached to each other. So some of the FNAs and biopsies I had (I had to have a few) were inconclusive, but in hindsight they think they were probably sampling the non-cancerous cyst. Other samples were suspicious but they couldn't pinpoint the exact diagnosis until I had my surgery. Like Loz12345 below, surgery was always on the cards for me, and I went in knowing it was quite likely that it would be malignant. Hopefully for you both you'd have more concrete information before any surgery as I know I found that quite stressful. So it was after surgery when I received my official diagnosis (stage 2 mucoepidermoid carcinoma). I didn't have any symptoms beforehand aside from the lump (and if my 2 year old ran into my face at speed it would hurt a bit) but nothing else. So your pain is not necessarily a bad sign - could be do with pressing on a nerve maybe, but worth mentioning to whoever you see.

 Loz12345 yes I saw Fearne Cotton! It's never nice to hear people going through similar, but at least someone with a platform raises some awareness as I didn't even know salivary gland tumours/cancer were possible before my lump. Surgery was always on the cards for me too, they are so skilled so whilst there is a risk of the nerve being damaged, they will do their utmost. With mine, they took as much as they were happy and confident with, and then my radiotherapy was to ensure that it was all gone (keep your fingers crossed for my first post treatment scan in Jan for the all clear).