is transplant possible after discovery of tumour?

I'm new to this board and wondered if anyone has any experience of having been told they are at the point of needing to be referred for transplant to then be told that's not possible now due to CT scan having detected a small tumour on one of my kidneys? I was given this news today and I really dont know how to cope with it. I have had one bad oesophageal bleed in September this year with 3 varices banded and a second gastroscopy 4 weeks later with 4 varices banded and due a third gastroscopy in two weeks time. Should the tumour be benign would anyone know if this still limits my ability to be referred for transplant? I understand there's no chance if the tumour is malignant as i dont have 5-10 years to be clear of cancer to wait for a transplant. Having come to terms with the fact I need a transplant to suddenly have that ripped away from is hard to take on board. Any advice greatly appreciated - many thanks :-)

11 Replies

  • Do speak to someone at the PBC Foundation, they will give you the support you need. You write in a "matter of fact" way which shows you have great strength and that will help you to get through this difficult time. I wish you the best result possible.

  • Oh honey you must be tearing your hair out. You need to ask lots of questions and don't be fobbed off. The other lady is right ring the foundation they were so good to me when I needed them. I'll keep you in my thoughts & pray you get your answers and solutions soon. Keep your chin up. Xx

  • I agree with Oidra and Teddybear, phone the Foundation - link to their website at the top of this page, with phone etc details on the site.

    Meanwhile, we are thinking of you - you will get through this.

  • What bad luck, hopefullythe tumour is benign and you will get a transplant, my thoughts are with you.

  • Positive thoughts and prayers coming your way. God bless

  • Sending you prayers and best wishes I hope it's benign and you get the transplant x

  • Hope all goes well for you . Best of luck . Thinking of you xx

  • Hoping for a positive outcome for you Shiela x

  • What stage is your PBC?

  • So sorry to hear your news. I'm unable to help you but am sure the Foundation will be able to. Try and keep positive, we're all thinking of you on this site.

  • There hasn't been a reply after the last which was two years ago and I tried friending you Sheila. I pray you are still with us. I have the exact same question. While testing for the liver transplant list a CT of the Abd revealed an Adrenal Tumor. They are 80%benign so it was watched for a year. I had a pheochromocytoma and it's overproduces my Thyroid Stimulating Hormone. I have been told until it out and biopsied I must wait. Now they have discovered in my last MRI that I have a tumor in my spine next to my L5. That explained the intermittent back pain I had been having but doesn't look well towards a benign diagnosis. If anyone found any answers and is still on this blog please let me know. I'm in the advanced stages of PBC and was told Stage 3 Cirrhosis in 2014. Any info is appreciated! Terri

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