Inoperable liver cyst

[Encausticlinda]

I have a liver cyst approx10cms. It is right in the middle of my liver and completely surrounded by the liver. The consultant said that it was inoperable because of its location and that removal would leave too little liver to survive on. Has anyone else had this problem and what will happen if left untreated. Thank you.

[Millie09]

Sorry to hear that. I have a friend with cirrhosis of 5 years. They also found a Leision that is not operable. It is not as big as the one you have, her one is 4 cm .she has had this for over a year. All she does is have three monthly scans and endoscopy .I'm not sure if she is on and Medication for it .but she is doing well .she looks better than I do. Best thing is to ask your consultant. All.the best

[AyrshireK]

I am assuming they have identified this as a benign cyst. Is it causing issues at present and are doctors anticipating it to grow any further? The British Liver Trust has a page all about the different growths and cysts which can occur in the liver and it might offer you some guidance.

britishlivertrust.org.uk/li...

Sorry can't offer any further advice, your doctors should be able to advise further.

Katie

[Encausticlinda in reply to AyrshireK]

Thank you so much for your advice. They believe it to be benign. It has grown to this size in the last 4 years. I had a cyst removed in 2012 and this one was barely there then. I have an appointment in February to hear what they believe is the way forward but I anticipate them to just monitor.

[Dulux]

I have two inoperable cystadenoma, it will really depend on how they are effecting your liver function. My cysts where causing no real significant issues until mid last year when I deteriorated rapidly and was then listed for transplant. The cysts I have are causing obstruction to the bile duct which I believe is why we talked about transplant from the early days.

[Encausticlinda]

Thanks for your reply. At present mine are not a problem but my concern is there location which is just below the major blood vessels and arteries that connect the liver.

[Dulux in reply to Encausticlinda]

Do you see a liver specialist consultant? I see if you can get bloods done at regular intervals, ideally some sort of imaging scan on at least a yearly basis, trust your instincts if you think something has changed. Then the most important thing is to get on and live your life, try not to let it get a hold and control who you are.

If the worst happens and you end up going to A&E try and take some notes with your condition etc, it saves a lot of time and answers a lot of questions without you having to remember, I also have all critical contacts numbers on it.

[Geffy22]

Ask if PDT could work. we have the latest pdt molecule that is transiently water soluble so we believe it will be injected straight into/onto diseased cells Inc cysts, tumours etc but we are way off clinical trials.

We're looking for an 'orphan condition(s)' so we can accelerate the research and get approval as many cancer treatments would be out patient one off treatments. If you don't know about PDT, there's info on NHS and manilla sites - we know it works there's research back to 1920s on PDT killing cancer, but NHS would rather put people through surgery, radiotherapy and chemo. Just a note current PDT molecules are limited in terms of use, ours does not have the same chemistry hence injection into site that needs treating not via a catheter into the blood!

Best of luck

[Dulux in reply to Geffy22]

There is a pretty significant gulf between a cyst and cancerous growth. I would think having only had a quick look into PDT it doesn't have the reach to benefit deep internal issues as yet, it's interesting and potential benefits are clear to see compared to what is currently on offer.

[Geffy22 in reply to Dulux]

In PDT treatment, the reactive oxygen species produced kills cells that are deoxygenated ie diseased cells, so if we're talking about killing a cancer cell or killing cells that create cysts, they really is no difference as far as the reactive agent is concerned. Both are unhealthy deoxygenated cells. That's the beauty of this chemistry, it attacks any diseased cells. hope this helps

As a chemist working in biotech I would strongly recommend discussing it with your consultant, just remember not all of them know about PDT are trained to use PDT or understand how it works, but there are plenty of organisations that do including the laser centre in York, the charity killing cancer etc. If you want to help yourself these days you really have to do a lot of leg work - I self diagnosed diabetes and had to argue with my doc to test me because all the markers he looked at said no diabetes and I am diabetic. I self diagnosed asthma, I diagnose my daughters cfcs etc. Doctors are great, but they only know what they know, good luck @Dulux. I hope you get some answers soon, but pls don't think because surgery is not possible that's the end of potential treatments, xoxo

[Dulux in reply to Geffy22]

It's certainly cutting edge, my liver is too far gone, my symptoms came on at a late stage and the damage was already done, isn't that always the way!

Unfortunately there is no luck involved, my life can only flourish through another's loss.

[Encausticlinda in reply to Dulux]

Thanks for your info. I hope you get your new liver soon 😊.

[Geffy22 in reply to Dulux]

Sorry to hear this Dulux I found out my hubby was dying 24 hours before he died. He was In hospital for 4 weeks before hand but 12 months earlier should have had some investigation (post code lottery) anyway, hospital said he'd recover - same message to me for 4 weeks, he deteriorated but I thought it was due to all the screamers on the ward affecting his sleep (always cup half full so probably kidded myself).

I get a lot of comfort from this forum knowing people with liver probs, whatever the cause, like my hubby can recover.

Stay strong, good luck xoxo

[Encausticlinda]

I am returning to the hospital on February 13th . At the last consultation I was unable to react intelligently as the response was not what was expecting and such a surprise to me.

Now I can think clearly and intend to research and that is why I am so grateful for all your responses. Your combined knowledge and experience is invaluable. Thank you everyone. This really is an awesome forum.😃

[Mama41]

Maybe ask to be referred to a transplant surgeon. They are normally the best of the best. I've had a 22cm tumor removed and as long as the surgeon can leave at least 30% of your liver than you should be ok.

[Bob275]

Very sorry to hear about your problem. I would suspect that the only way out will be a transplant. I can only wish you the best and hope you can get treated as soon as possible. It sounds as if Millie09 friend is in a similar situation but is surviving. Has anybody mention any medication?.

[Encausticlinda in reply to Bob275]

No as yet. I am hoping that they will have a program for me when I visit on the 13th. I appreciate your kind words.

[Cariad64]

Hi

I have two hemangiomas one is 2cm and the other 10cm. I also have a 4cm cyst.

I suggest you see a liver surgeon in a good hospital. I have had so many different and conflicting information it's untrue.

I am waiting a liver resection operation for the giant hepatic hemangioma.

please go and see a liver surgeon. my gastro consultant told me not to operate as no need.... it causes a lot of pain n symptoms. liver unit understood.

Good luck

[Encausticlinda in reply to Cariad64]

Thank you for your advice. I do see a liver consultant at Hammersmith hospital, part of Imperial College. I do agree with you in that the response one gets depends on who you see. I am hoping for a plan of action when I go again in a couple of weeks.

[Cariad64]

How did you get on? hope you had some answers. x