Hi All, I would really appreciate any advice from anyone who has maybe been in a similar situation to me or know somebody who has.
Last October I was told I have four lesions in my head and neck. One of them which is located in the deep parotid gland had ‘worrying signs of malignancy.’ This came as a total shock as i couldnt feel or see the lesion and the 22mm one that I could feel on my masseter muscle was ‘unremarkable’ and made of Parotid tissue.
I was given a date to receive a biopsy using fine-needle via ultrasound, but when I was seen by the sonographer he wasn’t able to see the lesion via the ultrasound, so he said he wouldn’t be able to carry out a biopsy. Since then I have had 2 MRI scans every 6 months as check ups and from both i have been told that they can’t rule out cancer but it might be normal tissue. The specialist I am under doesn’t want to perform surgery because of the risks as it is a highly invasive surgery which can possibly paralyse one side of my face..since it is so close to the main facial nerve..
I have done everything I can to try and not worry but after a year and getting more symptoms, ear pain, pain in my face, jaw and neck, I am really struggling.
I have been admitted to hosp a few times after having a series of racing heart episodes which has left me feeling exhausted and even more worried but also know that worry and stress is not helpful..
From research, these lesions are usually not cancerous but pain is a sign and local tissue that has spread to other areas are signs that it can be. 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 have nightmares every night and I can’t talk to friends or family because I’ve always been a happy positive person in their lives and I know they find it difficult to know how to be around me when I’m not so this last year has just been really difficult.
any advise as to what next steps I should take is really really appreciated as I’m not sure whereas to go for advise. Thank you so much in advance.
Thanks Dani, I was told a biopsy cannot be carried out because they can’t see it on an ultrasound.. :( and that surgery was highly invasive so they haven’t wanted to go down that route.. I’ve just had 2 mri scans this year and been told they will just wait to see if it changes/grows/ spreads which is very worrying to me..
Hopefully the other hosp where I am meant to be receiving treatment for something else will agree to take a look and I can get a second opinion.
Hi Loz, I’ve just had a look on her Instagram Page.. wow.. the last year ive really thought I am on my own with this and now here I am talking with two lovely ladies and hearing about fearne cotton. I wish none of us were going through this but it does bring me some comfort knowing I’m not alone anymore.. how is the soreness today? I have read that surgery is always the best option but for the last year they’ve just wanted to wait to see if it grows, changes or spreads!! I just wish I could be given a biopsy as the not knowing is the hardest part.. wondering if it’s changed, grown, spread.. they told me initially that they’d found a 12 year old scan from another hosp which showed I had the ‘worrying lesion’ even back then!! They think that I was never told because the scan wasn’t for that area… Praying I can get a second opinion and the royal London hosp can successfully carry one out for me.. it must be so far in the deep lobe.. anywho.. please keep us posted for your fna results. Sending love, strength and a gentle hug.
Oh goodness, that must have been so so stressful.. did you have an mri scan at all of just the fna’s? Has this all been this year? Did they carry out a total parotidectamy I think it’s called? And how are you feeling from the radiotherapy?
Keeping everything crossed for you and sending love, strength and gentle hugs
It sounds like yours is so deep inside it's hard to get the biopsy done. Keep pushing because if it will end in surgery regardless, it makes sense to get the ball rolling on that if it suits you.
I did have an MRI, that showed a lesion but again didn't fully identify the nature of it. Mine was just confined to the superficial part of the gland, so I had a partial parotidectomy. They had good margins (ie healthy tissue) around the whole cancerous part, apart from the part by the facial nerve where they didn't want to take anymore.
My timeline is slightly convoluted - first went to the GP in late 2022 when I noticed the lump. It was the ultrasounds, FNAs, MRI and biopsies until spring 2023. We knew surgery was necessary but at this point my ENT consultant said it didn't look too concerning so wouldn't matter if I did the surgery then or in a few years for example. They knew we were trying for our second baby throughout all the different fnas etc so we essentially decided to see what happened first - a surgery date being booked in, or getting pregnant! I was lucky to get pregnant so during pregnancy they did a couple of ultrasounds just to keep an eye on the size of it. Once my daughter was born in January 2024 we then got the ball rolling again, and had surgery in June. Glad we didn't wait any longer, once it turned out not to benign!
Radiotherapy was exhausting but I was fairly lucky with physical side effects. Finished about 7 weeks ago now and gradually getting back to "normal", whatever normal is after this year!
Wow, it has been a long journey for you! I can’t believe you have had it all to deal with on top of a newborn baby. I can’t imagine how you have coped!
I’m glad to see you weren’t too badly affected by the radiotherapy. It sounds like some people have an awful time with various side effects. At least that’s one positive to come out of this, if I can call it that!
Fingers crossed for your upcoming scan too
Hey, how did your appointment last Thursday go? Was it a step in the right direction?
My MRI is next Monday. The lady I spoke to apologised stating it should not have taken so long. However, ultimately it has so this is going to be hanging over my head over Christmas as I doubt there is any chance of hearing from ENT before Christmas now. Having the appointment is a step in the right direction though. Trying to keep positive!
Hi all,
My MRI went ahead on Monday. I have just had a letter from the ENT team stating it showed a lesion in the superficial lobe of the parotid gland indicative of a pleomorphic adenoma. However, the results of the FNA still haven’t come back yet (even though I was told a week when I had it done 15 days ago).
However, it also said the scan incidentally picked up a possible small lesion over the left side trigeminal nerve for which a further MRI has been recommended and will be arranged. My case is to be discussed in the clinical radio pathology meeting. No further info or timescales have been provided, but I expect the Christmas period will delay it by an extra week.
I just feel at a loss to have been sent a letter with terminology with no explanation and now a possible second problem with no further detail. I don’t know what to do; there is no meeting scheduled with the ENT team yet and my GP has basically told me previously there is nothing they can help with as diagnosis and treatment is now with the ENT team so there’s no point even phoning them. I don’t know whether to call an ENT secretary to see if there is a hope of a phone call with a doctor or otherwise what to do. Nearly burst into tears at my desk in the office when I read the letter and just feel so lost with it all.
Sorry for rambling, it helps to just write it all down sometimes!
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