Waiting to be told…

Hi, After 3 cancelled operation's, I finally had a tumour and some lymph nodes removed from my neck on Feb 6th, all along I was told the chances of them being cancerous were close to zero but a month after the op the biopsy results came back showing that both were cancerous and were secondary cancers, I was booked in for CT & MRI scans and a MDT meeting has taken place to discuss the results, this was 2 weeks ago and I’m still no closer to finding out what was discussed and if they found a primary cancer. 
My question is how long does all this take?? I naively thought once you’re told you have cancer things would move along quite quickly but this doesn’t seem to be the case, I know I’m not alone in this happening but it affects so much, it’s causing so much stress to myself and my family with the not knowing ️

  • Welcome to the forum ParotidPaul although I'm sorry to hear the lymph nodes that were removed turned out to be cancerous and were secondary cancers.

    This must be a very stressful and nerve-racking time for you and your family but I'm glad you've reached out to us Paul as you'll find our community to be very insightful, and supportive, and I'm sure it won't be long until some of our members stop by to share their experiences and advice.

    I really do hope you get some more information soon but if you would like to talk things through with one of our cancer nurses whilst you wait, you can contact them on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. They're very easy to talk to and will do all they can to answer your questions and support you during this anxious time.

    We're thinking of you Paul and will have our fingers crossed you won't have to wait too much longer.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Thanks for the reply, strangely I had a call from the hospital yesterday and had an appointment today, sadly the news got worse, the scans showed multiple tumours in my right lung, neck and parotid gland, I’ve been given an oncology appointment for Monday where I hope to find out the next step.  

  • I'm glad you've finally heard back from the hospital Paul although I'm sorry to hear the news wasn't good.

    I know the next 5 days are going to be tough but I hope you can take some strength, and comfort, from knowing we are sending you all our support and will be thinking of you on Monday.

    Kind regards,

    Steph, Cancer Chat Moderator

  • I took time to read your post the other day, but didnt comment.  Sorry to hear this x 

  • That’s ok, it’s all seems very surreal at the moment. 

    At the moment every appointment I have the news gets worse and worse, I really hope I hear something positive on Monday

  • Hi ,I'm so  sorry  to hear this news. How long had you had the lump prior to the operation. 

    I am due to have this operation as I've been told I have pleomorphic adenoma. I've had for over 6 years .

    I've had Mdt meeting ,biopsy and pre assesment.  How are you healing from parotidectomey.  

  • Sorry to hear this news , it is such a whirlwind of emotions for you to deal with  in your circumstances.

    I hope  that you are recovering and managing it all .I've been worrying due to similar issues . How long did you have the lump for? Before your diagnosis.

    Did they include you in your options  and treatment? I find the waiting for results awful.

    I've had lump in parotid gland over 6 years  recently  diagnosed .

     about to have surgery but fearing the worst. 

    How have you found the operation ? the healing? , the  right options  and choices to make?

    Why did they cancel so many times?

  • Hi, I found the lump in August last year,  everything moved along quite quickly to start with, once I’d seen my GP I had a hospital appointment within 10 days and an Ultra Sound and a biospy a few days later, the results from that were inconclusive though and looking back that probably slowed everything down, I can only presume it was cancelled 3 times as they thought it was a low risk tumour, I kept being told that the chances of it being cancerous were very slim indeed. I never got told how long I could of had the tumour for.

    The op itself went well, you’ll have a cut from your ear down your neck, it was sore for a few days afterwards but nothing too extreme, I did suffer some nerve damage though which I think is fairly common, I still have no feeling down the left side of my jawline and my lower lip has also been affected. I was told I could return to work after 2 weeks but I felt I needed an additional couple as my face was still quite swollen, I think this may of been due to the tumour coming back though, as the MRI has shown it’s back and already larger than the original one! 

    I’ve been told what they removed was a poorly differentiated adenocarcinoma, which apparently is a rare type of cancer to have in your parotid gland, I haven’t been given a treatment plan as yet, my appointment with oncology is on Monday and I have a PET scan immediately after it.

    The waiting for news I found really hard, I think everyone does, it’s mentally draining and you go through so many different emotions.    


    I sincerely hope you have a much more positive outcome than mine, I think in nearly all cases even if the tumour within the parotid gland is cancerous it’s highly unlikely to have spread beyond it, I think I’ve been very unlucky. 

  • Thankyou so much for sharing this , I find that information from people in this journey, is helping me get a clear perspective of what may or may not be in the future.

    I am so sorry that your going through this. Its my worst fear . My father had throat cancer so its always been in back of my mind. 

    The waiting for results, this is challenging for so many.  So many people been told benign but its not . 

    I hope your journey goes well and wish you well with your treatment plan . Thanks again for sharing I know it's so emotional and really appreciated. 

  • Hope everything has or goes well at your appointment today.