Ethmoid mass

Hi there,

My name is Lauren and I’m 26 years old :) but of an odd one but struggling to get any info on it!! Docs have found a mass in my ethmoid and frontal sinus (incidental finding - no actual sinus complaints whatsoever). Initially, they thought it was mucosal disease (sinusitis?), possibly chronic, to explain lack of symptoms. But after 6 weeks of antibiotics and meds - amoxicillin and doxycycline, fluticasone - the follow up CT saw it grow 3mm. Nasal endoscopy is perfect, no inflammmation or infection; bloods show no sign of infection but some inflammation markers present. ENT have concerns due to no clinical bacterial, fungal or viral complaints, and that the mass is unilateral (right side). I have been prescribed a further 6 weeks of intranasal steroids and to slow/hopefully shrink the mass in anticipation of an op and excisional biopsy. ENT have admitted they will not know what this growth is til it’s biopsied. There has been no bone destruction evident on CT, but there is erosion on the orbital, cribriform and frontal plate. Does anybody have any idea what this could be, please?

Also

- I have lost 16kg since August, no appetite, cannot finish meals

- I am constantly tired, fatigue easily and feel very weak

- having frequent olfactory hallucinations (burning electricals, 5-6 times per day)

- recently starting having nosebleeds; never had one before in my life (they don’t hurt)

- can’t smell out of my right nostril AT ALL; taste is impaired

- right cheek is completely numb; have spots/flashing lights in the right eye; facial pressure/headaches radiating around my right eye/brow

 

thanks for any advice - I’ve found limited answers thus far! X

  • Welcome to the forum Lauren although I'm sorry for the reason you are posting.

    I and the other members here on the forum are not medically trained so unforunately we're not able to tell you what this could be I'm afraid however you're more than welcome to have a general chat about this with our cancer nurses. Their phone lines are open Monday - Friday between 9a.m - 5p.m on 0808 800 4040.

    It's been a few months since this member has been on the forum but I'm going to try and put you in touch with [@Ethmoid]‍ as they were diagnosed with ethmoid sinus cancer earlier this year and may be able to help you understand the symptoms you're currently experiencing.

    I hope you don't have to wait too long to have the mass biopsied Lauren and that the results show it isn't anything sinister.

    Kind regards, 

    Steph, Cancer Chat Moderator 

  • Thanks for getting back to me, Steph! I realised after I’d posted that I was perhaps asking a lot - the waiting and not knowing was obviously getting to me, sorry!

    I have since decided that it is what it is, knowing the complexities of it won’t change it for now, and I’m not going to do myself any good worrying about it before we even get there. The only thing I could achieve from that would be to say ‘I told you so’... to myself haha! Not a prize worth winning! 

    Thank you again for your message - I will post an update in the next few weeks following the results (and fingers crossed it’s nothing!) x

  • Hi Lauren, did you find out what this was? I’ve been having sinus issues too (post nasal drip and nosebleeds when blowing nose). I’ve had two nasal scopes and they said I have a lot of mucus so think rhinitis. Apart from that scope was normal but still worries me. 

  • Hey there!

    I would say, I know it can be really alarming, especially when it’s you having to deal with the symptoms daily, but take faith in the results you’ve already had back - they sound promising. The cells in your nose are really sensitive, and if you’re having to blow your nose frequently (because of excess mucus) then it may be causing friction resulting in the nosebleeds? I would maybe suggest speaking to the consultant about the CAUSES of the excess mucus/proposed rhinitis - is it allergies or something you could change to relieve your symptoms? If that doesn’t feel right, jot down the symptoms that concern you, and tick them off as they present, so you have a solid ‘diary’ for your consultant to investigate - this should at least set you off in the right direction :)

    I actually had the opposite to yourself and aside from the nosebleeds, I had NO sinus/nasal symptoms at all! I was presenting with more neurological problems like visual disturbances, seizures and ataxia - but it’s still got a good ending so I’ll share it with you!

    I was finally moved under the care of an ENT oncologist (our hospital used locum consultants, so I would always see a new doctor and have to start again) because I had become very poorly at this point. I had a growth in my frontal sinus, that wasn’t responding to medical treatment and they didn’t know what it was without a biopsy; but they couldn’t access my sinus without invasive surgery. So I was booked for an open frontoethmoidectomy (don’t google this if you’re squeamish haha!) to have a excisional biopsy - they were going to treat it AND find out what it was. On the day, I found that the hospital had booked the wrong procedure; the surgeon was not qualified to carry out the procedure I needed. My records were then investigated. Because I’d been passed between locum doctors, my treatment plan was stopped and started and it turned out I had missed a medical pathway. Before I was rebooked for surgery I asked to try the medication pathway that I’d ‘missed’. I had 6 weeks of IV administered medication at the hospital and prednisone and my follow up CT scan showed that the tumour had responded to the treatment. I had a check up in July this year and the growth was still dormant so... to put it simply, I have no idea what it was/is!!

    I hope this helps to put your mind at ease; trust your instincts and go back to your doctor if it doesn’t feel right and keep us posted on your progress - I hope to hear you on the mend soon!! Take care xx 

  • The consultant is booking me an appointment for further allergy testing. I have eczema and already know I’m allergic to cats, so they said people with eczema are more prone to allergies.

     

    Thank you for sharing that. Sorry to hear that the pathway was so disorganised for you but I’m glad to hear things are going well for you now. So did they determine that it was a sinus cancer? Or are they still unsure? Was the treatment you had chemo?  x