Pancreas or liver? confused

[chelle]

Hi everyone, I hope i am not on the wrong board. Dont really know what im saying or doing today to be honest.

My mum has taken unwell over last 3 weeks, with a drastic change from what she is usually like (fit, healthy, eating like a horse, full of energy)

Ok, it started as i say about 3 weeks ago, she had alot of belching, and really bad pain in the centre of abdomen right under breastbone, and slighlty to the sides, but not definate right or left if that makes sense. I can only tell you vaguely as she is not very keen on letting her true pain show (stubborn beyond belief,lol)

So, she went to docs, who decided it was heart burn, put her on meds for that, and within a week she was jaundice. So back to docs who decided it was gallstones, he done bloods, which he said are ok, with a few that are high, but my mum never knew what ones were high,low,etc.

Fast forward to today when she had an ultrasound appointment to see how bad the stones were blocking. Then came the shock that its not gallstones, but something blocking the liver. Pancreas was mentioned, but i wasnt there, and mum is a little unsure whats been said (shock i think) Now we are waiting for word on when she has to get CT scan done (hopefully ASAP, as she is in shear agony)

I really need answers on what it can be that is causing this. I feel such an utter waste of space as theres nothing i can do or say that can make it better for her. I have read that the pancreas can cause these symptoms, as well as the liver, but i guess they are all connected in some way as they all deal with bile?? maybe im wrong. Also she has not been eating well, as its to sore, and has lost a stone in weight over last month. (now down to 6 1/2 stone) she is very jaundice, looks terrible, has little energy, tired all the time etc.

Can anyone help me, or give me an idea what is going on? I just want to know what is the next steps that need to be taken, and how i can help my bestest friend in the world, thanks a million for reading, my thoughts are with everyone who is on here.

Chelle xx

[Nardobd]

Hi Chelle and welcome to the "family"

I'm sorry to hear that your mum has been so unwell. I'm no medic but will share what I know.

The pancreas lies across the body just below the bottom of the ribcage with the head of the pancreas on the right hand side. The body and tail of the pancreas (which is shaped like a leaf) then extend towards the left side of the body.

Pain and jaundice are symptoms of pancreatic cancer but that isn't definitive - lots of other conditions can cause these symptoms too. The pancreas doesn't deal with bile but it does lie adjacent to the bile duct. The liver makes the bile, which is then stored in the gallblader until it goes through the bile duct to the small bowel. My husband's tumour, which was in the head of his pancreas blocked the bile duct and caused jaundice.

To remove the blockage a very simple operation (which doesn't require a general anaesthetic) can be done via endoscopy to insert a stent protecting the bile duct. A stent is a small plastic or metal tube inserted with the camera via the throat and placed around the bile duct to protect it from whatever is resting against it. It's uncomfortable but not painful to insert, so hubby tells me, and it will start allowing the bile to drain straight away.

However, it's important that the doctors know what they are dealing with and a CT scan will help. I assume that it's an NHS hospital? If so, you may need to put some pressure on to get the scan done quickly. Keep phoning and (politely) make a nuisance of yourself! If you're not getting anywhere, most hospitals have PALS (Patient Advice and Liaison Service) units attached to them and they may be able to help. If it does turn out to be pancreatic cancer make sure your local hospital is a regional centre (a list can be found on our main website: www.pancreaticcancer.org.uk/regional_centres.htm)

The "not knowing" is always the worst bit...no matter how bad the news is, once you know what it is you can start dealing with it. Also your mum will get symptomatic relief which will make her feel a little better and then you can concentrate on getting her weight back up. If she's not eating properly, she will be tired and have no energy and I expect the worry is taking it out of her too.

In today's world there is no need for anyone to be in sheer agony - we've got an arsenal of painkillers, so it might be worth asking your mum's GP if he can help with that side of things.

After the CT scan, it should be discussed at an MDT (multi-disciplinary team) meeting where the medical doctors and surgeons come up with a way forward, ie what is wrong and if it is cancer, whether to operate or to treat your mum with chemotherapy. If it is pancreatic cancer your mum should be allocated a specialist nurse who will have time to help you and your mum through the diagnosis and initial stages. If not, ask for one! The specialist nurses are great because they are very down to earth and can often explain in more patient-friendly terms. They also have ways and means of making things happen a little more quickly!

All this, of course, depends on what is wrong with your mum. Hopefully it's not pancreatic cancer! Either way, please do let us know and remember that we're here to help,

Love

Nicki xx

[Margey]

Hi Chelle

Just wanted to say how sorry I am here to hear about your Mum feeling so poorly. Nicki has given you such good advice.

The key is pushing for that CT scan so that you know what you are dealing with. After my endoscopy the doctor said I needed an urgent CT scan but somehow the request got lost in the admin system and it was only because my husband was phoning the hospital all the time that it was sorted quickly. I have to admit that that was the only glitch in the system.

I couldn't eat when I was jaundiced so I lived on lucozade because it was the only thing I could taste. A leaking bottle badly stained the carpet though!!! The waiting for diagnosis is the hardest part. You say that you feel useless but you aren't because you are there for your mum but please make sure you look after yourself too just in case you have a long haul ahead but I really hope it's not PC.

Love and hugs

Margeyxx