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Stomach Cancer?

JaI22
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I have recently received the news that I am facing stage 4 cancer. Hotspots consistent with a Neuroendocrine Tumour have been identified in my liver. Since then, the medical team has been working to locate the primary cancer site to determine the most effective treatment. I have undergone various tests, including ECGs, blood tests, urine tests, stool tests, and two PET scans—one locally and a more detailed one in London. The results from the London scan indicated that the primary cancer is located in my stomach. Following this, I was asked to have additional blood tests and a gastroscopy. After the gastroscopy, I was informed that no abnormalities were found in my stomach, and no cancer was detected. A biopsy was taken, and they will send it off for analysis, with results expected in 2-3 weeks. Meanwhile, I find myself in a state of confusion, wondering what is happening. I am overwhelmed with information and unsure of what to think at this moment. Is this a common situation? How reliable are PET scans, and could there be a reason why the gastroscopy did not reveal anything? My next appointment with the consultant is not until August 19th, which feels like an eternity. I would appreciate any clarification, whether good or bad, to help me gain a clearer understanding of what is or might be occurring.

  • Hello and thanks for posting

    I'm sorry to read about your current situation and appreciate that this must be a very difficult time for you.

    It can sometimes be difficult with neuroendocrine tumours ( NETs ) for the primary source to be found. These tumours can be slow growing and small, especially in the stomach or small intestine. They don't always clearly show up on scans, and although PET scans are usually more reliable than CT scans, they can sometimes show areas of activity that don't turn out to be cancer. The gastroscopy may not have found anything simply because the tumour may be small or hidden.

    Waiting to find out more is understandably difficult but biopsy analysis can take time especially for NETs which often require specialist pathology review ( sometimes at another hospital) to get the full picture. Hopefully, once they come through your specialist team will tell you what the treatment plan will be.

    In the meantime, you may find it helpful to know about a support organisation called Neuroendocrine cancer UK ( NETs) who support people affected by neuroendocrine tumours.

    I hope you get some more clarity about your situation soon. Please get back to us if you need any more information or support. You may find it helpful to talk things through with one of the nurses on our helpline. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Kind regards,

    Celene

  • Offline in reply to CRUK Nurse Celene

    Thank you. 

    I did call my specialist nurse, who informed me that the cancer that the PET scan picked up was in the wall of my stomach, and my gastroscopy was to see whether it was any further in my stomach - I'm not really sure why, or what difference it would make whether it's in the wall of my stomach or in the stomach. 

  • in reply to JaI22

    Hello and thank you for your further post,

    Everyone is treated individually. To be able to plan treatment for your situation, the doctors need to gather as much information as possible and will order many different tests. Knowing how deep into the stomach the cancer has gone might help the doctors to work out whether treatments like surgery can be done or if chemotherapy is a better option.

    Your team at the hospital will be able to clarify this for you better, as they know your situation.

    I hope you can get some answers soon.

    Take care

    Jemma

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