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

Hi. 

AnxiousEm92 said:

Neither my doctor or dentist take me seriously because I think they sense my anxiety and put it down to that and at the hosp it is impossible to speak to anyone so I just feel totally stuck!

I can see how this must be driving you mad. 
I haven’t suffered from this particular situation but if I were I would be getting a second opinion from another hospital. If you are in the U.K. you have the right to be seen where you like providing there is capacity. 

I would definitely go for a second opinion as Beesuit suggested.

I am not sure of the procedure but i know it is possible as a friend with cardiology issues got a second opinion successfully.

Thank you for your advice.   I will try to find out how to go about getting a second opinion. Really appreciate your time. Have a lovely Sunday!

Thank you for your message. I will try to go about getting a second opinion.. I am due to have tooth implants at the royal London hosp so i am hoping I can get a second opinion there. Wishing you good health and happiness

Second opinion. 

https://www.macmillan.org.uk/cancer-information-and-support/treatment/your-treatment-options/getting-a-second-opinion#:~:text=If%20you%20want%20a%20second,previous%20treatments%20you%20have%20had.

Hi, 

I am currently going through the process of diagnosing whether a “lesion” in my left parotid gland is cancerous. So far, I have had an ultrasound (which showed the lesion in the gland). I have a fine needle aspiration appointment in 6 days and then I’m still awaiting the MRI scan appointment to come through so I hope to have that scan within the next week or two. The lump is hard and does not move around, so I think it’s pretty much guaranteed that it is a tumour of some sort, but not sure whether it is malignant. Like you, I am suffering some earache and pain/discomfort around the lump, but it is not constant and the earache and pain was not there from the start. My lump however is visible in front of my ear. I’m relatively young (the same age as you if the 92 in your username is your birth year!) and I am trying to stay positive, but it’s very difficult.  

It’s great that you’re having regular MRIs so they can keep track of everything and any changes. However, I can fully appreciate your nervousness and worry about not knowing precisely what is going on; my lump appeared a couple of months ago so I have only been going through this process for a few weeks, but like you it is really impacting on my sleep and quality of life and I’m also struggling with speaking to anyone about it. I would definitely push for a second opinion. Even if they advise the same monitoring, it will help to put your mind at rest to a great extent. 

Feel free to reach out to me if you want to offload!

Hi Loz, thank you so much for reaching out and connecting and yes that is my birth year! It’s really nice to speak to someone going through a similar situation except I'm glad that they can see yours on the ultrasound and can perform a biopsy which will hopefully clarify things for you. Have they told you if your lesion is in the superficial or deep parotid lobe? 

my pain also comes and goes.. I also have pain sometimes at the back of my tongue and I seem to get through so much water in the night from waking up thirsty.. I worry if it cancer if it is anywhere else in the body but they haven’t warranted a full body scan and no one will insure me privately because of this ongoing investigation… (heavy sigh ) 

One positive out of this is no longer being fearful of blood tests because I have had so many this last year!

Thank you, it has been a really hard year being in this unknown place, I had to stop work after a few weeks when I was first told last year as it just completely consumed me..thankfully I had moved back in with my mum after having to sell my home after my relationship ended so I didn’t have the worry of a mortgage and bills but I’ve spend hundreds on private consultations though none have really helped and I just hope I can push forward with a second opinion even though I know it will take some time like all these things do.  It’s all very scary, I used to be such a good sleeper but I don’t remember the last time I didn’t wake up several times in the night… 

wishing you all the best for your scan in the coming days.. ️ please do keep in touch and here to chat anytime .  

Hi Em,

Thanks for the message!

No, the ultrasound just said a lesion within the left parotid gland. I don’t know the difference between those two if honest! The report said the right parotid gland and both submandibular glands appear normal. When the ENT consultant surgeon briefly saw me at my initial consultation (I think I was lucky enough to have about 90 seconds of his time), he said that it will need surgery, but of course if it is malignant then other things will need to be considered I’m sure.

However, for some reason they are carrying out ultrasound again at the same appointment as the ultrasound guided FNA next Tuesday. No one from the ENT team has contacted me to tell me why. Not sure if they are just doing it because I’m there for  the ultrasound guided FNA anyway, or if there is a particular reason. I suppose I’ll ask on Tuesday but I guess the sonographer probably won’t know either! Still no MRI appointment either so I’ll be chasing that on Monday as that will be 16 days since my urgent referral which was supposed to take 2 weeks. I’m 31 days now since the referral from the GP, where you’re supposed to find out if it’s cancer within 28 days. Perhaps naively, I thought it may slip by a few days due to the NHS, but I wasn’t expecting a few weeks! I can’t imagine how you have coped over the last year with the uncertainty. 

It’s great you’re back home so you have support around you and aren’t alone with your thoughts in the evenings, although I appreciate you probably didn’t want to end up back home in those circumstances! Even if you’re struggling to talk about it, I guess having someone around a lot of the time for company must be a comfort to you, and a welcome distraction at times too. Plus, as you say, an assistance financially too to make that side of things one less thing to worry about.

I had the opportunity to pay for private healthcare through work a couple of years ago but declined because I thought I was young, healthy and nothing would ever happen to me! I wish I hadn’t make that decision now! Would you be able to have a full body scan privately? I’m not sure of the cost, but could it be an option?

Have you had any counselling or anything to help you through? I’m not sure of your job, but if your employer has an employee assistance scheme, you can sometimes get one or more free counselling sessions. It might be worth looking into if that is something your employer offers? Hopefully though you are managing the days at work now and find it a welcome distraction? I do find that working is helping me take my mind off it to a certain extent during the day. 

I will definitely keep in touch and let you know how I get on, and please feel free to message me anytime!

Hi Loz12345  and AnxiousEm92 

Saw your posts and thought I'd say hi. I am a few months ahead of both of you - well, hopefully neither of you will go down the route I have, but it's nice to hear of some similar stories. I was diagnosed with parotid gland cancer in June this year, just after I turned 34 so similar age to you both. I've been through all the scans, biopsies, FNAs, surgery and radiotherapy so any questions do feel free to ask. I've finished radiotherapy now and waiting for my first scan post-treatment. Definitely agree with getting a second opinion for anything you're not sure about.

Thank you so much, that’s so kind! Google says how rare it is and there isn’t as much information around as some of the more common types of cancer. 

I’m sorry to read of your diagnosis, but pleased to see you have made it out of the other side of the treatment you’ve had so far. I hope you’re managing to get back to some normality in your life!