Hello

Hello

I had a gastroscopy last Tuesday and found out I had a 6cm tumour in my oesophagus that the nurse said was probably malignant. It was a massive shock and it was very savage how the news was delivered. I’d had trouble swallowing and was told I probably just have gastritis and it took mentioning it in four GP appointments (I was run down I’ve had shingles and also a chest infection lately) before one doctor saw the symptom as a red flag and referred me. It was still a referral to rule cancer out rather than diagnose it.  The nurse took biopsies and I’m having a CT scan tomorrow. It’s really scary waiting for the tests and I’m scared as I’m 37 year old mum of 3 children. Finding this forum and the positive stories has helped after such a horrible week. 
Do you get results of CT straight away? I’d just rather wait until the consultants have a look and tell me everything with a treatment plan. 

Xx

  • Hi,

    I am so sorry that you are going through this. This is such a scary time. My husband was diagnosed in November. He received his CT results a few days after it was done when he saw a surgeon. He then went on to have a PET scan before seeing his oncologist. He then had a laparoscopy. The only results he received immediately was from the laparoscopy, all the others we had to wait a while for. The waiting for the results is torture, but once he started his treatment plan (FLOT chemo) in January he felt calmer. He's been home for a week now, after having surgery on 26th April. We are now waiting for the histology results to see if he requires any more chemo.

    The way the initial news is delivered is brutal, I think that they give the worse case scenario, but hope for the best. My husband has blown me away with how positive he has been, although that was hard at the beginning. I believe that positivity has really helped him.

    We have a 15 year old daughter and was worried about telling her so we waited until we had all the test results and a plan in place. She took it better than we expected. I made her promise not to google anything, but come to me if she had any questions. From the point we told her we have kept her informed of each of the steps along the way.

    This forum and the people on it are amazing and have helped me in so much. 

    Wishing you all the very best, Di x

  • Thank you Di! It’s helpful to know it may take a few more weeks and examinations to know. I feel so bad because I didn’t have a choice in knowing at this stage. I don’t remember the gastroscopy because of the sedation and maybe they mentioned I had a tumour so I met my partner in a small room with comfy chairs and they told me I had a tumour that was probably malignant and handed me a copy of the report with all scary terms on it. We both feel really upset and angry by it. It would have been better for them to say we found abnormal cells and you need to go for a CT scan. Then the option of asking further questions. The worry and helplessness you feel just isn’t helpful. 
    Does anyone have any advice to make the next few weeks easier? 

  • Hi Orange

    Welcome to the forum, Sorry that you have been given such blunt information by the nurse doing the CT scan; my husband was given new directly also, he was alone in the hospital after being admitted the night before, he could not come home as was not discharged and was left to deal with what he had been told without any support.  As difficult as that was for both of us, the NHS did everything they could to move as fast as they could for him.

    For my husband, he focussed within himself during this time, he told the tumour it was not going to win, and he carries out mantra's which reflect what his mind wants, rather than what his body is offering... this sounds a bit deep, but for him, so far, this has worked.. Two years ago we were in the same position as you, now we keep going, and although he is not cancer free, he is doing amazingly well

    Good Luck 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you for the kind replies. I had my CT scan a week ago and the MDT meeting was this Tuesday. The specialist nurses called me on Tuesday evening and asked me to go for a meeting. I asked to know some information and the biopsies confirmed it is cancer. There’s thickening in the oesophagus and there’s one node that looks larger in my chest. Im going for a PET scan this afternoon and meeting a consultant in the hospital tomorrow. Even though the news is bad I’m a lot less anxious and worried now the hospital are involved. Hoping for low as possible numbers in the staging and getting started on a treatment plan very soon. 

  • Orange

    Sorry that the news has come back as being cancer, I hope that the PET scan goes ok and that you will have a better understanding tomorrow of your plan of action. 

    We are here for you, keep positive 

    Sending strength and healing your way. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Thank you so much for sharing, my partner has just received his treatment plan and will be having surgery, you have made me feel so much better xxx

  • Just updating this thread. The PET scan showed a slight trace of cancer cells in a node higher up in my chest. I had to have a EUS to take a biopsy of the cells. I’ve got an appointment with the oncologist on Friday to discuss treatment plans. I think I’m having a combination of chemo and radiotherapy. I’m 6 weeks post initial gastroscopy.