Hi everyone, hope all of you are as well as expected. Had my 2nd two day assessment on Wednesday and Thursday at the QE Birmingham. Forgot my overnight bag so not a good start. Met aneasthetist who was happy then the physician who told me the mass on my liver was cancer and inoperable but there were ways of dealing with it. It's slow growing but quick spreading. I said "what, I've got cancer?" He said it looks like it. I left his room in shock. Met the surgeon, she was lovely. Cancer was mentioned again. Blew in the machine for lung test and that was normal, then my obs. High temperature again, low sats so had to go over to accident and emergency with a letter and had antibiotics again. I still have what they think is cellultis. Have been told I will find out next Friday afternoon if I am listed as they said the cancer will kill me so transplant the only realistic option. The staff are lovely and caring but was glad to get home.
Will keep you up to date
Thanks for listening, Julie x
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jules45
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Hi Jules, sorry to hear what a stressful time it was for you. I had HCC and cirrhosis at assessment. I just wanted to say that if you are accepted for transplant that the cancer gives you a greater priority on the list. I was only10 weeks on the list even though I was told that they were looking for a special liver for me. Keeping everything crossed for you for Friday. Very best wishes. Alf
Hi Julie, I am sorry to hear about the bad part of the news but keeping my fingers crossed you'll get the dream liver soon! Loads of positive thoughts your way and keep us updated.
Thankyou for your kind words,, yes, fingers crossed
Julie xx
Hello there Jules 45, my name is Jaycee. Firstly welcome to the forum. The feelings you mention I had them all, truly.
I had liver cancer.
I think I am a lot older than you looking at your lovely picture. I am 68 so, I was also scared that I would be too old for transplant.
The same words said to you were said to me and many others here on this site.
I am not very well qualified to offer much other than love and support Jules.
What I can say with certainty. Is the doctors medical and surgical are top notch in their field. So whilst you are very scared now. Try to take a breath.
I am newly transplanted, believe me I had every worry and doubt you can have. Will it grow to quick, to big, how long, am I too old, am I fit enough. I think fitness is a key.
You have to get mentally, physically and emotionally fit.
I know when you are in this position as you are right now at this moment, it is all still a shock.
You will get through it, there is a light in the tunnel you are currently in.
You have come to the right place to find friends and people who will walk your path with you, and support you.
I was transplanted on 30/03/19 still recovering. If I at 68 and full on Mrs Worry over everything, can do this so can you.
Stay strong, stay positive. This it the time to draw on your inner strength. When you cannot find it, come here on the site a fresh infusion of support will inspire you.
Sometimes when faced with a diagnosis like this it can be hard to say how you really feel to your family even. Here, you can be you. Take heart all is not lost, you a scared not beaten. Stay strong.
Sending so many virtual hugs, and much love. Jaycee
Hi jaycee, I've been on here for 4 years, I joined when I was 45 and I'm now 49 and have made many friends and have received a lot of support. Thankyou for sharing your story which Has helped me.
Hi Jules apologies it is I that is the newby. I am always a bit scared to contribute. Sometimes worried I may say the wrong thing. So please forgive for not knowing xxx I wish you well on your journey. Jaycee
Hi, doñt be apologetic, I never know what to say to others questions, scared I'll put my foot in it so I feel guilty. Keep posting and keep smiling x julie
Hi Jules, well I was at the same assessment as you. Couldn’t agree more, staff are all fantastic, trying to accommodate everyone’s needs. Fingers crossed for you for next Friday. Andy.
Hi, just worked out who you are. Left early as I was sent to a and e, high temp and cellulitis on legs. What did we miss. Are you nervous about Friday's phone call. Found out Thursday I have liver cancer they just blurted it out. Got home safe, glad you did x julie
So sorry to hear of your latest news Jules. At least you will now be prioritised for a new liver. From what I've read from others, QEH is one of the best, and will take good care of you. Waiting is the worst, but good luck and best wishes,
Hi Julie, an awful shock for you! But lots of hope and encouragement from people on here who have had a Transplant and come through it to now Good Health. Keeping everything crossed 🤞 for good news for you 🌻 Takecare will be thinking of you, Love Lynda xxx
Sorry to read you have cancer. I had HCC and was also assessed at Birmingham and had my transplant there over 3 yrs ago.
I was late being placed on the transplant list due to me having a second TACE treatment to shrink the tumors. However, once on the list I only waited 7 days and 7 days in hospital. Having the rare blood group AB Pos had also helped my short wait on the waiting list.
If all goes well for you I doubt you waiting very long, matter of weeks rather than months if there are no complications.
TACE is only performed to shrink the tumours, it isn't a cure. You should find out in next few weeks whether you will be placed on the list and depends whether you fit their criteria. The only reason they will refuse a transplant is if the tumours are too large or you have secondary cancer.
I was diagnosed with HCC, which had apparently been lingering around for years and was sent to QEHB to be assessed for a transplant in January. My wife and I actually recognised you at one of the clinics Julie, but we didn’t want to intrude.
Unfortunately a PVTT was found on my QEHB scan and any form of macro invasion rules out transplant. I was devastated, expecting the worst.
Notwithstanding, my amazing surgeon performed an open liver resection just over 4 weeks ago. He removed 40% of my liver containing both the HCC and PVVT (under 5cm but I haven’t asked for the path results to be sure).
They were concerned I would struggle as the remainder of my liver is cirrhotic due to haemachromatosis.
I’m just 68 and had expected that a transplant would now be out of the question. Nonetheless I was told by several consultants that because the cancer had been down-staged a transplant wasn’t completely impossible, just highly improbable I’m guessing.
In spite of everything I’ve just spent the afternoon walking up a (small) mountain. I’m gaining strength every day. Thankful doesn’t describe it!
They are amazing caring people at QEHB and it is the best place possible to be treated for this devastating illness.
Wishing you all the luck in the world and I hope my little story helps to cheer you up. Never give up hope.
Hi, you should have said Hello at clinic, I would have been pleased. I'm so pleased also that your gaining strength and are so positive. Thank you for ýouŕ encouragement and keep well and tap me on the shoulder next time you see me x julie
Hello Julie, I’m sorry to hear about the news you were given. I have read your posts and although I can’t offer any advice at all but I would just like to say all the best and it looks like all your doctors are on the ball with this for you. It sounds like it is all moving forward quite quickly now for you. Best of luck for Friday
I'm so sorry to hear your news. I'm afraid I can't advise you but you are in my thoughts and prayers for Friday and after. The people on here are so supportive, they will make you feel much better. Love and hugs Lynne xxxx
Sorry to hear that news Julie. Might have been nice if they'd actually sat down and discussed that with you rather than blurting it out as they have. I know at hubbies CT scan at assessment they all came to the bedside and said "We found something we didn't expect on the scan!" Hubby and I both looked at one another and thought that HCC was what they'd found but in his case it was the aneurysms in his splenic artery.
Hopefully they will decide to list on Friday and you get transplanted sooner rather than later. The only barrier to listing if all else has been good might be the size of the tumour. There are strict criteria as to when and when they can't operate due to tumour size (The listing criteria at present are: Single tumour<5cm diameter or Up to 5 tumours all < 3cm or Single tumour between 5 and 7cm with no evidence of progression (<20% volume increase) over a six month period. Locoregional therapy or chemotherapy may be given at this time. AFP <1000 U/l ).
TACE can be used to shrink or slow down tumour growth so hopefully they can keep you within transplantable limits. I do hope so after all this time and after all you've gone through.
Thoughts very much with you Julie. Fingers crossed for Friday.
Hi Katie, it was an mŕi scan that picked the tumour up by accident. I was waiting for news about something else and the doctor came to me in a panic. This was at a Welsh hospital. He was rushing to the fax machine to inform Welsh hepatologist. I thought he was hiding something but faxed letter cc cancer care threw me. 3 month mrì scans after that. It was the physist doctor who said "as you have cancer" we might have to give you chemo and a probe that is known to work magic. My liver is so brittle that surgery is out. The surgeon said the same. Thank you Katie for always being there, I do appreciate you
So sorry to hear this Julie. I know they will do all they can. Isn't it surprising that this wasn't picked up sooner on your scans at Abergavenny They really know what they are doing at B'ham. I want to wish you all the best luck finding a donor even if it is delayed by the need for TACE 1st. I trust B'ham 100% and know they will do everything they can xxx
Hi Jules, you must’ve felt like you were in a bad dream. However, they’re addressing it and you will get the best outcome. Hopefully you can keep calm till Friday and get the results. I will keep you in my thoughts. Please keep us updated too. Jane xx
Hì Jane, your in the wars too so I'm thinking of you. Yes it is a bad dream but I'm under a good hospital. Im trying to keep calm, its difficult. I'll message the forum on friday.
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Hubby update, saw Hepatology Registrar 
Pips Assessment.
Done?
Believe drs report or body actions,or both?
