Feeling so worried, scared and alone

I am suffering with acid reflux and GP referred me for endoscopy. I thought everything would be okay but they found a bulge on my stomach. No one on NHS told me what this was just sent me off with a report for follow up CT scan. I was really scared so booked a private consultation. He looked up my CT results for me as this would be a lot quicker than the NHS. He said all clear, roll on 2 weeks and I get a letter from NHS saying they want an MRI of liver. I suffer with severe anxiety and panicked and said I couldn't do it. Went back to private consultant who said sorry and that his radiologist had missed this and looking at report it is most likely a benign growth on liver. He said he would do MRI. The problem is I am terrified of having an MRI. He has asked me to have an MRCP and MRI of abdomen. I'm absolutely terrified. I don't think I can do it. I feel like I'm having a mental breakdown and they will find something else and keep asking for more tests. My family are supportive but insist I have this MRI. I feel mentally shattered and don't know what to do. I just want to get on with living my life instead of constantly worrying about it all the time.

  • Hi, I had an liver mri with contrast dye done last sunday. Had a ct the previous week. I have a 2cm mass on the liver. Makes you wonder why they dont seem to get much info from the ct. MRI took 20 mins, my arms ached a bit from holding them above my head (ask for 2 pillows) except that it was fine. I also had an endoscopy monday just gone, which showed no cancer. Seems to be the way they do it, get all the info from investigations. I'm now in limbo land waiting for result of liver MRI. Hoping no further investigations. I dont even know who will contact me with result, gp or hospital. Said result in 1 to 2 weeks. Dont worry about having MRI xx

  • Thank you for replying. Sorry that you're in the same boat as me. I hope that your results come back clear. It's just all very scary. I've been told my MRI will take 1.5 hours which has freaked me out so it's a battle for my brain if I can stand doing the MRI for that long. It's very draining having all these tests and just keep thinking they won't have an answer and will want more tests.  The waiting is a nightmare but I hope everything will be okay for you.

  • That is a long mri, mine was just liver. You are able to talk to the people during the scan, so if you become uncomfortable they may be able to pause it. I have read that people who are claustrophobic  sometimes have a sedation, maybe you could ask about that for your anxiety.  Do let me know how you get on xx

  • Yes. Not sure why it is so long really when I've already had a CT scan of the abdomen and the abnormality is in the liver only.  The GP has prescribed diazepam so I'm hoping that will keep me calm. Thanks. I'll let you know how I get on if I can do it. Let me know when you get your test results. Good luck. 

  • I spoke to.a locum gp for my anxiety she would only give me an ssri anti depressant which had loads of side effects, so havent taken it. I see the nhs said for you to have a liver scan but the private guy said abdomen as well and MRCP one, like me the ct found nothing anywhere else, so think just be a liver scan. Are you having the scan under nhs or private this time, do you have to pay for each investigation, ie scan you have, dont mind me being nosey x

  • I've been on antidpressants before but hard coming off them. It took me 8 months to come off them completely. They did help at the time but since coming off them I find it more difficult now to cope with the anxiety but my family don't think I should go back on them for now. I have made a right mess of this problem so far. GP told me to go through NHS on 2 week referral so as it was really quick decided not to both with private for now but because NHS didn't communicate with me very well I went private through husband's health insurance. Everything is paid for by the health insurance. Consultant  seemed really good and told me to go for the CT scan with NHS as it was already booked and he could access the records the next day. Great when he said everything was clear so because I had a rough time with the endoscopy and lack of empathy from NHS my husband sent a letter of complaint and said for me to be discharged from NHS. Few days later got the letter from NHS with tihs liver swelling and didn't know what to do. Now I have to go for a long MRI when I could have just had the liver scan only with NHS. NHS actually have just spoken to me about the complaint this morning and said I can be referred back with them if I want. So if I can't hack the long MRI I may well go back to the NHS.  The private consultant did say that the lump found by the NHS they found they pretty much think it is benign and something called an FNH growth, second most common benign tumour of the liver. Why the NHS can't tell you what they find I don't know so having the private consultant for pulling up my results has been good, however, his radiologist has made the mistake of not obviously looking at my CT scan properly and giving me the all clear. I am really struggling mentally with all this and I wish I'd just stayed with the NHS in the first place. Don't mind at all you asking me anything.

  • I'm on the 2 week nhs referral and they have been fairly quick doing the investigations. So they got that benign result from the ct, but obviously want to double check with an mri. Which is good. I wish I had a more definate diagnosis from the ct, but the endoscopy report just said upper abdomen mass, which I know. I only had the endoscope on Monday and they did take a biopsy as found erosive gastritis. I was scared of the endoscope, but I had sedation and after put mouth guard in dont remember a thing. I had my first ct scan on 27th june, mri on 4th july and endoscope on 5th july. Think that's reasonable timescale.  NHS have been pretty good for me, but now I have the wait. But at least hopefully our ct scans have not shown any mass anywhere else in our body, so that's good news, and my endoscopy showed no cancer. Yes I am frightened I have liver cancer, the waiting is awful. How long has your investigations taken so far?

    I'm 52, what age are you, and I'm from oxfordshire.

  • To be fair it has been pretty quick. I had endoscopy 12th June and then CT scan 17th June. What was really upsetting for me was because I am so anxious I asked for sedation for the endoscopy but was told by the nurses that I would still feel everything and be awake, it's just a muscle relaxant. That made my anxiety level go up so much. Still thought it was best to have it and then they couldn't get cannula in and said Dr would have to do it. Being a wuss I started to cry, they said he would get the cannula in. The Dr was nice but it took him 7 times before he finally got the cannula in. For me I did feel it and it was quite unpleasant but just to hear him saying I don't know what that is really panicked me. He didn't come to see me after to tell me anything, just sent home with the report that said bulge found in stomach. I was crying all night and that's when we booked the private consultant who said it was probably the spleen leaning on my stomach (which it was) and I did not have the symptoms of stomach cancer. That reassured me a bit but then anxious again having CT scan but thought I'd been given the all clear and then this growth on the liver being found on NHS. Again private consultant called up the report and has been able to tell me it is probably benign but they do have to check to make sure hence the MRI like you.  Try and not worry, although as I know that is easier said than done, but I have read that benign liver tumours are common.  The hard thing about the NHS is having to wait for results all the time, that is where private is better, but only if they get the results right! I am keeping all my fingers crossed for you.

     

    Similar age, I'm 51 and from Manchester, husband and 2 daughters, 22 and 19 who have all been so supportive but finding it difficult seeing me get upset all the time. It's hard to hold it altogether at times.

  • I had to wait 2 hours before I got in to have the endoscope so when I got on the trolley I burst into tears twice, they were quite nice, I was lucky with my endoscope then. It's the whole thing everytime I had a phone call or investigation I got upset. I dont have any symptoms particularly so may be a good sign. Found mine liver mass on routine blood tests for a chest infection I had which wouldnt go. I keep thinking what next, biopsy, chemo, your thoughts run wild. 

     

    Hoping will get feedback need week, but who knows. Keep in touch x

  • Will do. Feel exactly the same as you.  Even though the Doctors all try to be reassuring you still think about all the possible outcomes, more tests, treatments etc.  Take care and will definitely keep in touch with everything. x