Brother awaiting diagnosis

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Hi. I am returning to this online forum after about 14 years (husband died 2010  - duodenal cancer)

My brother had an endoscopy ten days ago after presenting with chest and back pains and suffering with acid reflux caused by hiatus hernia. He started to bleed during the endoscopy so was hospitalised for a few days. They took biopsies after the camera showed a 7cm growth. He has had a CT scan and is now awaiting results. From conversations, the medical team are almost certain it is cancer. He has been put on Omeprazole but is having bad side effects from the medication, mainly chest pains.

My brother is two months away from retiring so all their plans are now on hold. I need to be able to support him and my sister-in-law as best as I can - she is not in the best of health, she no longer drives and their house is going to be difficult for him to navigate whist he recovers from surgery/treatment. We also lost our sister to ovarian cancer 6 months ago so this is now devastating the remaining family, which is basically the three of us. I live about 150 miles away so it is very difficult to support them daily, although I will go up there to help as much as I can.

I just need some direction as to who/where they can go for practical help and support. He is an Army veteran and I looked at SSAFA but not sure how they can help. Any ideas anyone? Also, anyone gone through similar during endoscopy and this size of tumour? Is this operable? 

  • Hi

    Mine was 5cm so similar size to his. My pathway is 4 rounds of FLOT chemotherapy followed by an operation and then some more chemo to hopefully finish the job! 

  • Thank you. I was thinking he would probably have to have chemo first to shrink the tumour. He has also been asked if he would be able to have a PET scan at short notice. These were just in their way in when my husband was diagnosed. Have told sis-in-law to say yes to anything they offer like this. 

  • A PET scan is a very useful tool to detect any spread of the cancer so definitely say yes to that. If it is cancer, they will grade it using the TNM grading system. You can read more about this on the Macmillan site. This will then determine the treatment options. Mine was the same as Bob’s. I am now twelve weeks post oesophagectomy surgery and having my second round of post-op FLOT chemotherapy this week. 

  • Yup agree totally with Cool Blue, get the PET scan done if it's offered! It's far more detailed than either an MRI or CT scan, costs a lot more too but hey ho you can't put a price on your health can you?!! 

  • Thank you. I hope your treatment is not causing you too many ill effects. 

  • Thanks. Yes, I have said take whatever they offer. He has been offered the PET scan on NHS. I always found these online forums really helpful and am so grateful for people undergoing treatment for taking the time to help others.

    Strangely enough, all three of us siblings have/had hiatus hernia and related acid reflux. My sister had hers 'fixed' when she had her cancer op. I had endo & colonoscopy two years ago when presented with severe anaemia. I has oesophagitis which cleared with a few months. Now on meds and restricted diet. TBH my brother had been to A&E twice b/w March & May with chest and back pains and I feel this has been completely overlooked.

    Am researching as much as I can as all I can think of to do to help. 

  • Hello

    As Cool blue said your brother will be given the cancer type and TNM, and what his pathway is, FLOT, OP, FLOT. They we unsure if I would have the op, the FLOT did a good job and I was given the op in the end. The waiting for the diagnosis I found the most difficult.

    As your brother is a Veteran,  SSAFA, Royal British Legion and Veterans UK would be who I would contact. Also Macmillan themselves. 

    Best wishes Jennie Sparkles

  • Thank you. Good to hear things went in the right direction for you. Sounds like things haven't changed much since my husband was diagnosed in 2009. He had similar treatment as there was no protocol treatment for duodenal cancer at the time. My sister had everything thrown at her but had to stop last round of chemo due to clotting. Inevitably it spread to her liver. I will make some enquiries of the various organisations once we know what and how much support they will need. It will be practical support. 

  • Hi Jennie

    Did the FLOT reduce or get rid of the cancer? I've read so many posts saying how brutal the op is and the debilitating side effects post op that I'm in turmoil wondering if I should have it or not. I understand I'm fortunate to be given the option in the first place but can't help thinking if it's the best option in the long term.


  • Hello Anthony, 

    I would do the Op if I was in that position again, the post FLOT is tuff, it is hard physically and emotionally but I am goin to do another round, my histology was excellent but the post op hopefully gives me better odds for no recurrence. 
    What Op are you being offered? What is your diagnosis? T1/2/3/4?  Everyone’s journey will be different, even if we are similar. Cancer is the biggest head fxxx ever. 

    I would speak to your surgeon or oncologist, when I have asked them direct questions they have been honest with me. 

    Take care Jennie SparklesSunflower