Diagnosed a 2nd spread- referred to Oncology

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Hello

Quick history. Diagnosis Oct 2023, chemo, Ivor op Feb 2024 chemo, Aug 2024, Hernia at op sight, operation sorted to this day..Spread noted to Adrenal gland, gland removed Dec 2024. Ct scans every 3 months, 1st two NED. 3rd spread to lymph nodes, Para-aorta. 
I have no symptoms other than the usual nerve pain or ache, no weight loss.

I was told by the consultant in the UGI team on the 5th December that they could do no more, very kind, respectful, motivational support. I was being referred back to oncology, urgent I was told, He couldn’t answer what the next steps would be.

My question 

How long did people wait before they were seen

what tests if any

Any one else had secondary’s at the adrenal or lymph nodes of the para aorta 

Any links for research sites 

Thanks in advance

Jennie SparklesSunflower

  • Hi there

    Sorry to hear your cancer is in your adrenal gland. 
    When my relative saw the oncologist with this he was fairly hopeful the chemo would help this and even said it was preferable to a major organ metastasis. He was put on Immunotherapy and Oxapaltine chemp quickly within a couple of weeks after his appt! 
    I hope you get seen quickly 

    all the best 

  • I’m so sorry you have more uncertainty Jennie. I can’t help with medical advice but just want to send positive thoughts and good wishes to you. There are many positive examples here of successful further treatments. 
    Geraldine Rose x

  • Thinking of you jennie and sending my love and hugs xx

  • Good Morning 

    Thank you for your reply’s, I have an appointment with the oncologist who I have seen before when originally diagnosed. I am aiming to put together my questions for him. I will update when I know more  

    I hope you have had a good Christmas, the best gift for us cancer crusaders is ….. Time 

  • Hello

    Thanks for your reply, I hopeful this will be the plan for me, I am not looking forward to the chemo again, who is/does but I am holding onto threads that it surely cannot be worse then the FLOT that I had. Oxy I have had before, not a nice one with its dislike with the cold..

    My original diagnosis was esophagus, blasted and removed, less than a year later spread to the adrenal which they removed, now a year later spread to the para aortic nodes. 
    Hope for control and more time..

    What regime is your relatives treatment and how are the side effects?

    Best wishes 

    Jennie SparklesSunflower

  • Hi Jennie,

    So sorry that you are still having to continue the fight, especially since, if I remember correctly, your post-op histology was so good. I am booked in for a CT scan on 7th Jan as I have been having a few issues lately myself. Keeping my fingers crossed for NED but it’s hard not to worry that it might be the alternative… I am sure you will approach whatever course of treatment lies ahead with your usual pragmatism and positivity. Best wishes and, I hope, a happy new year to you. CB

    Cool Blue

  • Hi CB hope you've had a good Christmas. I'm really sorry to hear that you're having issues again as you've been doing so well. Do you mind me asking what sort of problems you're currently having? 

    Anthony 

  • Hi Anthony,

    I’m experiencing chest tightness and breathlessness. Also some pain in right shoulder. 

    Cool Blue

  • Hi guys reason for my urgent ct scan was I didn't feel right, feels like left arm has been given a right back, so cb hope we are both being too over cautious,  and we'll hear NED again, thinking of you, know you will handle the anxiety better than me, but that its still crap. 

    Take care and keep us updated x

  • Left arm like a dead arm feeling, predictive text dammit