Biopsy results through. Ct scan still not reported

Hi

Just wanted to update on my progress. My initial biopsy result came back negative which I think had everyone shocked. Statistically that was an 85% chance of being correct and I had a re-scope by an actual consultant on Monday, and afterwards he gave no a 50/50 chance if simply having an oesophageal ulcer. It was quite hard to take as I'd come to terms with the initial diagnosis from the first scope, but sadly today the new pathology came back positive for poorly differentiated adenocarcinoma. Actually feel lower about this than I did this time last week as I'd made peace with the diagnosis but the false negative gave me hope.

My reading would suggest that this is a particularly aggressive form, and I now need to wait the weekend doesn't the results of the ct to see if it's spread. Laporistomy (or whatever it's called) now planned, and probably PET and I'm feeling really nervous.

Not really sure what to think now and my nurse specialist was very kind on the phone, but when it comes down to it my head was up my rear end once she broke the news and I didn't ask the questions I should have at the time. The poorly differentiated classification is making me nervous, yet here I am still able to eat anything I want to more or less (smaller bites and none slowly though ) but constantly monitoring no body for twinges and symptoms that might indicate spread. I've never studied my urine so carefully. Any advice or experiences gratefully received as ever.

Graeme

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  • Hi Graeme. Mine was 'poorly differentiated' too and in the same place. And I felt and ate fairly normally too which makes it all a bit strange. I know it is horrible waiting for the next test or next result and you've had a bit of a rollercoaster with the false result earlier. Try and stay positive. I used to ask myself if it is helpful worrying and the answer is no. It doesn't help and besides which it uses a lot of your energy which you can better spend on your family and doing things you might enjoy. You don't have all the information yet. And try not to google too much. You just don't know if what you're looking at is in date, or really applies to you.

    Best wishes

  • PS. It's very common not to hear what you've just been told. Phone them back and have your questions ready. They won't mind at all.

  • Dear Graeme

    I am so sorry to hear your news. I know the total shock and horror you are experiencing. I feel for you. I had a clearly defined tumour yet was stage 3 with 1 lymph node involved but no metastasis. My understanding is it just means it's aggressive but doesn't mean it's spread. Usually the diagnostic protocol is gastroscopy with biopsy, followed by pathology report, followed by CT scan and PET scan (mine showed no lymph nodes) and then and endoscopic ultrasound done by a radiologist (EUS) which can say check if a lymph node is involved or if a cancer has grown through to say the aorta. I also had a barium swallow which picked up my large tumour which had been missed by a useless gastroenterologist and an incompetent GP practice - it cost me 6 months. You will most likely be given chemotherapy to reduce the tumour to operable levels if required (assuming your are healthy enough) and then surgery depending on the staging. Often the surgery is followed by chemo again (belts and braces) for an adenocarcinoma. The highest percentage of people are diagnosed at stage 3 but patients still survive. Staging is not always accurate as scans are only 80-90% accurate. The survival stats online are very scary but with the right oncologist and surgeon (if required) your chances are much higher than those posted. One of the surgeons I consulted had survival rates of well over 50%. There is a support group called the OPA (oesophageal patients association) which might help you and of course Macmillan. Also healthunlocked and cancer compass are useful sites for survivors.

    The website cancer.org has a very informative download 'detailed guide' to oesophagus cancer but is an American site where they drop the front 'o'. I read dozens of medical papers and did a huge amount of research including trial papers. There is amazing information online if you are the curious type but it an be scary. Your journey may be hard but the OPA has many members who have survived. I wish you the very best and hope you have a good support around you and the news is better than you hope for. Please do not hesitate to send me a message if you want more information - I so wished someone could have directed me to the sites and information and I spent sleepless anxious nights scouring the Internet to help me understand my situation and treatment options.

  • Graeme

    I have gone through this twice now. Once at my initial diagnosis, which correctly called out Oesophageal Cancer, then again 18 months after surgery, when a routine CT scan showed a "recurrence" on my aorta. Following the second diagnosis I was to go onto palliative care. Then after another PET scan and endoscopic ultrasound, I was given the all clear again.

    Mentally this is tough to take. You have to try and stay positive and wait the results from the various scans. I was told that a CT is not always the greatest and that PET and Endoscopy can be much more reliable.

    Like you, I think we are all over sensitive to every twinge and ache. The technology and the consultants are the only real truth available to us and we have to wait for that. An agonising wait that I found made every day seem to last forever. The consultants etc all know that this is a very bad time and do try to get back to you as soon as they are aware.

    I wish you luck and good health. Try to be strong. We are thinking of you.

    Bruce

  • If there is an obvious tumour visible, the diagnosis is straightforward. Otherwise it depends a fair bit on the histology and analysis of patterns under the microscope which is not an easy skill to learn, and it can be subject to exactly where the biopsy samples were taken.

    It is a bit of a roller coaster, and the scans should come up with the best diagnosis (eventually?!), but there may well be an upside, worth checking with the doctors, that all this is a reflection of any cancer being at an early stage with much better chances of curative treatment.

  • I know that this is tough news but now you know that you have it, the waiting was worse - now they can subject it to treatment - I always said that it was horrible but that I was stronger that it. Remember that you are stronger than it and that any treatment really hurts it!

  • In a way the worst time is going through the tests. I do hope you feel more positive once treatment starts.

  • Thanks yet again for the comments folks. Expecting the ct result tomorrow. It's funny but weekends used to fly past, but this is easily the slowest one I've ever experienced. . . and that's nothing to do with the clocks going back.