Still waiting for treatment plan.

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My husband had a gastroscopy and biopsies on December 1st because a PET scan he had in October in connection with another condition indicated something unusual in his oesophagus. This was followed by a CT scan and an appointment with the Upper GI department in early January. We were advised by an Upper GI surgeon that there were highly abnormal cells in his upper oesophagus. The tests showed he had high grade dysplasia which we should consider as Stage 0 cancer. Further tests, another gastroscopy, biopsies and an endoscopic ultrasound, were ordered and another month later at the beginning of February he had these procedures. The reports  received by us immediately afterwards from the. endoscopist indicated rather worryingly that the lesion had grown and penetrated to the muscle wall, Stage 2. Since then we have been waiting to hear from the MDT to confirm biopsy results and staging and discuss treatment options.

I have been beside myself with worry for my husband and have posted previously about how hard the waiting is. This morning he heard that the biopsy results do not match what is seen in the pictures. A further gastroscopy and Endoscopic Mucosal Resection to take more extensive biopsies will be scheduled which should give them the answers they need.

It has now been getting on for three months since the first gastroscopy ( four and a half since the PET scan) and we don't appear to be any further forward. Based on how long it has taken thus far to get an endoscopy appointment and then the results going to the UGI team I think we are looking at April before any treatment will be discussed Frowning2.️

  • Hi Sue

    I can understand your worry at how long this is all taking. Waiting for tests and results is a very anxious time. It must be incredibly frustrating to be told that the test results do not match up and that yet more tests need to be done and therefore more waiting. I hope that things move quickly once they know what they're dealing with. 

    Take care,

    Amanda

  • Thank you Amanda. It is indeed frustrating but I know that many others are also anxiously waiting for tests and results, the system is overloaded. I have to have faith that the gastroscopy/ EMR will be arranged very soon and when my husband's doctors have the information they need effective treatment will follow swiftly. 

    Best wishes

    Sue