Anxious wait for results update

[hopeful_7]

I had my Barrett’s surveillance gastroscopy almost three weeks ago and a ‘lump’ was discovered. The results of my biopsy and CT scan are apparently back yet I am still non the wiser about what is happening. Apparently the biopsy sample was inadequate for proper interpretation and the term ‘equivocal’ was used. I’m going to need another gastroscopy done but so far haven’t received an appointment and I’m left wondering if all results come through in such a slow and non urgent manner. As far as the CT scan is concerned I have been told nothing at all. The tiny bit of information I have has only come about through repeated phone calls to the consultants secretary. I’m still a worried mess with all this waiting in the dark for some kind of explanation or diagnosis. Has anyone else any experience like this with the NHS process ?

I’d like to wish everyone the very best on this forum. Thanks. Paul

[Kate1503]

Hi Paul. It must be terrible for you not knowing what's going on! My husband had difficulty with food getting stuck, had an urgent endoscopy and was told immediately that there was an oesophageal tumour. An appointment with the consultant and biopsy results followed just 10 days later and chemo commenced 10 days after that. You don't say where in the country you live, but my understanding is that (and I hasten to say that I'm no expert) where there is a suspicion of malignancy, patients must be seen within 2 weeks and then fast-tracked with treatment. This is probably of no comfort to you, but my take would be that nothing sinister is suspected if 3 weeks have elapsed. All I would do is to make a big fuss and request an immediate response. It is really not acceptable to keep you in the dark and obviously worried. Just as an aside - I myself had to have several investigations done last year - didn't hear anything back at all. When I eventually chased them up, everything was fine. I know I was relieved to find out - but I would have liked to have been reassured straightaway. I guess what I'm trying to say is that they were extremely fast in dealing with my husband when cancer was suspected and then diagnosed.

I hope all turns out well for you and that no news is good news. Best wishes, Kate

[hopeful_7 in reply to Kate1503]

Thanks a lot Kate I see what you mean regarding your husband, I do hope he is ok ! I live in Manchester and wonder whether the seeming lack of urgency is poor practice or a genuine lack of concern re. my ‘lump’. I’m keeping note of all phone calls etc as if this does turn out to be the worst case scenario I will be taking the matter up somewhere in a complaint. By the time I get my next gastroscopy performed and get the results back I’m likely to be up to the five week mark. I have the feeling that the patient is completely cut out of the loop where information is concerned.

Thanks again for your reply Kate

[Kate1503 in reply to hopeful_7]

All the best Paul. Thinking of you - please let us know how you get on.

[hopeful_7 in reply to Kate1503]

Yes I will. What an amazing forum full of such brave people. Best wishes to every one !

[grandylynda]

Hi, I went through a similar experience this time last year. An oesopghageal tumor was found in March in an endoscopy. Even though there was a high chance of malignancy, I waited 3 weeks for anything else to happen (a ct scan)

I think it was May before I saw the oncologist and was officially told I had cancer. I had several morpe investigations. Were you given a contact no for support nurse after your proceedure?. I was and she told me thel result whn i asked her. If not ask if there is an upper g i support nurse you can speak to. Other than that it is the secratary but make sure you stick to clear concise facts and questions. The OPA also put me in touch with a doctor and ex patient who was helpful. He encouraged me that I did have a right to question the time gaps and gave advice about tackling it. Ring their head office for this. It may be OeAP? Not got it in sight at the moment. Good luck. It's hard but try to stay positive

[hopeful_7 in reply to grandylynda]

Yes thanks Lynda I’m now in touch with the secretary of the consultant. The GI nurse specialist so far hasn’t been of any help at all, I think she’s probably over stretched as she’s on her own and is part time !

I hope you got your problem treated.

I will come back on here when I’ve got more news.

[grandylynda in reply to hopeful_7]

I had chemoradiotherapy in June last year a nd an Ivor lewis op in Sept. I am still adjusting to changes but getting back into things now. There is light at the end of the tunnel!

[hopeful_7 in reply to grandylynda]

You’ve certainly been through it there. The thought of an Ivor Lewis fills me with dread. Hope you make a complete and powerful recovery.

Thanks.

[grandylynda]

Just take one day at a time

[Spikey]

I didn't have Barret's, but had dysphagia. The results of my first biopsy were inconclusive, similar to yours. However, I had a second endoscopy within a fortnight and got the biopsy results within a few days, which confirmed OG cancer. I had a CT scan within 24 hours and the results within 5 days. I started chemotherapy two weeks later. Unless there's nothing to worry about, and even then you should have been told, I think the treatment you have so far received leaves a lot to be desired.

[hopeful_7 in reply to Spikey]

I agree with you Spikey I’m going to complain about the way I’ve been treated so far. Being kept in the dark like this and having to make phone calls doesn’t seem like good practice. Over three weeks now and I’m still clueless.

Thanks

[Hidden]

It is quite a technically involved process to analyse these biopsy results, and they all depend on the biopsy samples being taken in the right place in the first place. It is not unusual for results to be unclear. It may be something that radio frequency ablation or another endoscopic therapy can sort out if it does turn out to be malign.

[hopeful_7 in reply to Hidden]

Thanks Alan. After three and a half weeks of waiting I finally received a call from the consultant. After reviewing the CT scan and the endoscopy photos he thinks the lump may well be a mucus plug in the lining of the oesophagus. The next biopsy will be carried out by someone with more experience so that they can check to see if there’s anything below the lump- could be an ulcer or a cancer although he thinks probably there won’t be anything. There is no invasion of the oesophageal muscular wall and the CAT scan didn’t show any other lesions. I’m very relieved by these findings but not quite out of the woods yet. I will return and post my next results, I’d like to donate something to OPA too as this place has been a beacon of hope for me.