Paratoid unknown type tumor

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Hello All,

I'm recently diagnosed with Deep Lobe Paratoid tumor. I had FNA which came back inconclusive and then a CT which did not show the tumor. The MRI showed the deep lobe tumor. Which shoes it is encapsulated. Surgery scheduled for December 6. I'm 41 year old never smoker. I'm terrified about the surgery itself and then the diagnosis. Has anyone gone into surgery not knowing what the tumor was and had a good outcome? I'm very scared right now. Looking for hope I guess. TIA

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  • Posted

    Hi Ashley My friend aged 69yrs has recently had the exact same operation you are going to have ,let me put your mind at rest she is absolutely fine this is the first op she's ever had and was terrified like you ,but she was home the same day and she was fine her scar is hardly noticeable and has healed   Really well ,her op was two weeks ago and she hasn't had any word as to weather it was a success or not .So sorry can't help you there but please dont stress about the o you WILL be fine . Hope this helped Regards Louise .

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  • Posted

    Hello Ashley,

     It is exactly 6 months since I had an operation to remove a large tumour from the deep lobe of my Parotid gland. Although, I can't reassure you about the fact that the biopsy was inconclusive I can answer any questions you have about the operation as I suspect yours will be similar to mine. In my own case the biopsy indicated that the tumour was benign and this was confirmed after the operation. I do hope yours is benign as well and it is quite understandable that you are so worried and scared. Do ask me as many questions as you feel you have regarding the operation and the recovery process and I will be happy to let you know of my own experiences. At bmonths down the line I am well and truoy over my operation and it is difficult to see any scar whatsover. Best wishes.

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    • Posted

      Thank You for responding. I am so scared and appreciate your writing to me. I feel that the Deep Lobe is more complicated bc of the nerve and am so worried about paralysis. Did you have any temporary paralysis? Did your doctor mention what would happen if he got into the procedure and discovered the nerve twisted around the gland? I am also concerned that most people I have met knew it was benign going in. Did you get any anti anxiety meds to prepare for surgery? I still have 2.5 weeks and my anxiety at a high level. Thank You
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    • Posted

      Firstly, let me tell you about the operation. You are quite right about the nerve being in a tricky place going right through the parotid gland and like yours there was a concern that with mine, it would be difficult to get to the tumour behind the nerve. I was also warned about paralysis and numbing of the area after. Because of the intricacy of the operation mine took a long while with 3 surgeons but this was just because they needed to be very careful. Whilst under anaesthetic they placed electrodes on my face so that they could monitor the impact of surgery close to the nerve. After the operation I was supplied with an eye patch for night time and drops to ensure my eye stayed lubricated. My eye was able to close quite resaonably and this part all came back very quickly. The doctors were more concerned that I might have some residual droopiness around my mouth and I soon got used to drinking from a straw. I needed to put the straw in the other side of mouth from the op because you need to seal your lips around the straw to be able to use it. I soon felt brave enough to drink coffee out in cafes, and use a straw and I carried one in my bag for some weeks. Eating was no problem at all right from the beginning.

      (There wasn't too much pain and I just took Paracetemol regularly until I felt comfortable.) I did get some earache which I think was a bit unusual. 

      I received facial phsio and went back a few times and kept up the exercises as they suggested. This is mainly to ensure the other side of the face doesn't get too tight as well as stimulating the op side. The facial droopiness improved rapidly every day for the first couple of weeks and then gradually improved over the next few months. I was discharged by my physio when full movement had returned and now I  have no drop in my mouth at all having passed 100% on the physio assessment. I do have a couple of little side effects which I will discuss witht he doctors when I go back for my 6 month check up but these are so tiny I can live with them. The feeling in my face is gradually coming back but I was warned it might not come back in my earlobe. (I don't notice it now).

      I didn't have any anxiety meds because for me this operation was simple compared with one I'd had the year before. (It was not connected but my parotid tumour was found whilst they were investigating why I was so ill in 2015). I had no symptoms for the parotid tumour although it was about the size of a plum!)

      Regarding anxiety, do whatever you can to help you relax and maybe see your GP. It is not surprising that you are so anxious, it is a natural reaction to what you are going to go through and nobody will criticise you for being anxious.

      I've tried to give you as much information as I feel would help your anxiety levels rather than make them worse but if you want any more detailed information regarding any of this just let me know. Best wishes.

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  • Posted

    Hi Ashley i had the exact same tumour removed 2 years ago and apart from a little numbness just below my ear i'm fine. The scar is hardly noticeable and i've got no drooping of the face. The surgeon said it was quite large and been there for some time and had to come out as every time i ate the side of my mouth swelled and i looked like i had mumps. It's easy to say but please try not to worry. Saying that I've got a gallstone op on 6 December and it's only natural to be nervous but i'm sure you will be fine. Good luck.

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    • Posted

      Hi Jill , i am brand new on here ,i felt i needed to comment on your post as lots of similarities with us.I saw a surgeon on friday with regards gallstones. i may need an mri depending on blood test results.He didnt explain this very well.however i will definatly be having surgury in next few months to remove gallstones. my most pressing worry at the moment is a partoid swelling, i am having an ultrasound on wednesday.I am worried they might do fine needle aspiration there and then if they suspect anything that needs investigating.( This happend after thyroid scan and left me in a state of shock!) should i take someone with me to the appointment? I am also reading far too much about partoid tumours and scaring myself silly. only time will tell .
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  • Posted

    This post is to ayone on this thread in particular, Eva and Ashley. Eva I first want to thank you for your detailed description of your experience with this parotid tumor.  I am wondering however if the term you guys are using "deep lobe" parotid tumor differs from the one I have been diagnosed  with, My surgeon describes mine as a Parotid gland tumor in the Warthin's Tumor catagory.  He keeps using the word cyst instead of tumor to describe my tumor.  At any rate from what I have read, the procedure you described is exactly the same as what my doctor described but he told me that I was going to have to have a drain tube that had to be left in for about 4 days after the procedure.  He told me that I didn't have to have this removed if I didn't want to since the CT scan, needle biopsy and lastly the MRI all indicate that it's not cancerous but  it was up to me.  He called me with the MRI results just a few days ago and so I reluctantly elected to wait on surgery mainly out of fear.  So he said we'll revisit the subject in 4 months.  He did say if I change my mind inbetween to  let him know.  So after a few days of thinking about it, I am having second thoughts.  This thing seems to keep growing.  I have an issue with my lymph nodes always swelling because of regular viruses.  And when my nodes swell it makes my parotid tumor feel swollen and it becomes even more pronounced on my face.  Sometimes it muffles the hearing in that ear or it sometimes causes the underside of my tongue on that side to feel fat and I also get these HORRIBLE headaches.I mean excrutiating headaces!  I get these headaches whether my nodes are active or not.  I am not sure these headaches are related or not.  I have asked the doctor if they are related and he said "probably not".  Have you or anyone else out there experience headaches with your tumor?  My other question is what made you elect to have the surgery as opposed to leaving it?  I am anxious to hear your thoughts!    

    Also Ashley I know it's been a while since this post so I don't know if you had your surgery or not but I wanted to let you or anyone else out there with anxiety that Ativan works very nicely.  I have been using it for years on an as needed basis for panic attacks and generalized onxiety.  Also Klonopin is more long acting

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    • Posted

      Hi Danya! I did have the surgery and mine ended up being Mucoepidermoid Carcinoma. Before surgery, my doctor told me that no matter what, the tumor needed to be removed because even if benign, it has the ability to become cancerous. I had fatigue, hair loss and headaches, but not sure if they were related to this. Are you on FB? If so, join Parotid People it is so very helpful. Happy to answer any additional questions. Thank you for information about anxiety mess.
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    • Posted

      Hello Dayna,  I had to google Warthin's tumour as I hadn't heard of it so please take note I am not a medic and I think you should be guided by your doctors. However, from what I have read your tumour does seem to be cystic in origin whereas mine was a pleomorphic adenoma. 

      I had to have surgery as pleomorphic ademenomas have a chance of becoming cancerous if they get too large and also the nature of a deep lobe parotid tumour is a problem because it can impact one of the very important facial nerves. This nerve runs through the gland and is linked to the abilitly to speak and swallow. Your tumour may not be near this crucial nerve but I think I would ask about this to help you make up your mind about surgery. 

      Fortunately, I had no symptoms at all other than a slight swelling in my neck which I would have probably ignored. So if I am right your tumour/cyst is different and may be in a slightly different place. I think the questions you could ask to help you make up your mind are :

      1) what will improve as a result of the surgery

      2) what are the risks associated with surgery

      3) are there any other ways of managing the tumour

      4) what will happen ifI don't have surgery

      5) If the outcome without surgery is poor then you might want to ask about how long is it sensible to leave surgery so that you can choose a time that suits you.

      Good luck and let us know how you get on.

      Eva

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    • Posted

      I should say that initially, doctor thought mine was a benign Wharton tumor or a cyst. He also told me that the larger they get, it becomes harder to remove. Could you get a second opinion?
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