My wife was called into the GP the day after an ultrasound and told there a 'few' lesions on her liver, the largest 5x5cm. She has pain in her upper right abdomen as well as lower left. The pain originally began there, with cramping. She is also quite bloated, has a low appetite but is still eating, and has lost maybe a little weight. there's no vomiting or diarrhea and no jaundice.
The GP understandably couldn't commit to a diagnosis and she's been referred for an urgent scan but that was nearly a week ago and we've heard nothing since.
Information on the internet points to something benign (age 46, light drinker, otherwise healthy) and her bloods and an x-ray came back clear, but I can't get the nagging negative thoughts out of my head.
Feel a bit better typing it out.
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ja0005
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Ja005, I have 22 lesions now on my liver, I have been dx with liver Cirrhosis and Portal vein thrombosis this was back in 2013. I was a light drinker and hugely into my fitness. I didn't notice anything wrong until I was admitted into hospital with abdo cramps, I was sent to the hospital there and then after my scan and stayed 3 weeks. I'm 36 by the way, dx when I was 32.
Don't panic, nothing will come of panicking except making you feel worse about a situation. The best thing for your wife is to chase up the Drs and ensure she has a well balanced diet, if she's not eating much ensure she is getting the vitamins she needs.
Please feel free to vent on here, we all have different stories to tell and advice to give. Let us know how she gets on.
Your reply is greatly appreciated. I'm mostly positive but having a bad couple of days and I'd rather get it out on here than take it home. It's comforting to know there are nice, supportive people out there!
I'm the cook at home so will make sure she eats well!
Does she has pedal or ankle or foot edema or swelling which when pressed forms a pit. I am not sure about the liver lesion with no concomitant symptoms. I suggest MRI of abdomen though I am not a doctor, but only a biopsy or MRI can tell what are those lesions actually.
No probs with her feet or ankles. I think they want to do a CT first, but the GP wasn't very specific. Found out she does have a fibroid though. Never rains does it?
CT is not a preferred scan. Either MRI or fibroscan is the best. GP not good to make a diagnosis only hepatologist or gastroenterologist is the best person.
Have now got an appointment to see a consultant gastroenterologist on Tuesday so things moving on a bit.
Still extremely worried due to the potential nature of the lesions and the speedy referral. Apparently the protocol with this is to diagnose within 2 weeks of gp sending it, although I suspect that might be standard practice in these situations.
Hoping for some good news on Tuesday- it's amazing to think that you're hoping someone you love 'only' has a cyst on her liver!
Hi
Hope everything goes well tomorrow when you see the consultant. Both of you take care please. Let us know how she gets on please. Lynne
Hi all. Just a quick update and not very good news I'm afraid. Consultant says US indicates secondary liver cancer. Waiting for a ct scan & being admitted today. Feels like the world has ended. She's only 46 for gods sake. Heartbroken.
Oh I am so sorry to hear this. I will keep my fingers crossed that the next part of your journey is a smooth one with a happy turn out!! They can work miracles now! Stay positive we are all here for you xx
Have just left my wife at hospital. Heart wrenching to have to leave her. Can't understand how she can be so ill yet look so well. She doesn't feel poorly only a little tired and the pains in her abdomen that come and go.
Don't know why she's been admitted, and no one on the ward seems to either as she's not scheduled any tests or procedures. We had to go to the bloods ourselves and when we came back to see the consultant he'd left us a post it with instructions to arrange a ct and go to the ward, taking his notes and US report with us. He said he'll call round tomorrow.
Struggling to make sense of it all but hoping against hope that the ct has good news for us.
As expected, had the worst news confirmed earlier. Small intestine + liver. Says can't operate. Biopsy tomorrow then look at potential treatments. Dietician coming today which is scaring me as I think this means they can't do anything.
The thought of telling parents & family is making me feel sick
jo0005, I am so so sorry to hear this, the dietician will come along and talk to her about diet and the best foods to be eating to keep her strength. She's got a battle coming up and is going to need her strength. Stay positive and discuss a way forward together, there will be a million questions you want answered, write them down you will forget. Speak to Macmillan they can assign you someone who can help with everything and even how to tell you family and friends.
Keep up posted, even as a virtual connection were all here for you x
Many thanks for your comforting and inspiring replies.
We had a better day yesterday. We told ourselves we would do our crying on Wednesday and start the fighting on Thursday.
She had her biopsy in the morning and was very sore from it all day but she did manage a good sleep in the afternoon which made her feel better. Also managed to eat something.
The consultant who did the biopsy was a lot more positive than the one who sent her for it. Essentially said that it's not been fully diagnosed yet so can't say how to treat it. Says loads of treatments available and potentially could even shrink the tumour and operate later. Gave us so much of a boost, and something to hang on to.
We are fortunate that we live in Manchester and will be asking to see an oncologist from The Christie when we have the biopsy results. I know she'll receive excellent care from them as my mum was a patient there for 6 years.
She's coming home today which we're looking forward to.
I am so happy you have been given a bit more of a boost, and have a bit more of a positive outlook. That always helps with sleeping and eating which is so important at the moment.
I hope the sun shines on you for the weekend and you get to have a 'normal' weekend with friends a family. Don't forget you need to rest as well as your wife. This is just as much your fight as it is her.
Back home yesterday. Saw another consultant who again was very positive, explained treatment plan would be worked out when diagnosis confirmed as cancer. Said that if confirmed then we would be referred to the most appropriate specialist at The Christie and be paired up with an oncology nurse. We liked this consultant! We have our next appointment Thursday afternoon and there's a mixture of dread and optimism.
Things starting to hit home now she's out of hospital. You're in a bubble from reality in the hospital and are in a different routine where normality isn't part of the day. Now we're back home I realise that the mundane stuff still needs doing, things like shopping and cleaning etc but with this giant weight on our shoulders. The realisation that things will never be the same again is overwhelming at times.
My wife was in a fair bit of pain with her back and shoulder on the right hand side last night which we assume is due to recovering from the biopsy. I think if she's still in pain on Monday I'll call the doc.
Again I can't thank you all enough for you positive support.
We're all here for you and your wife! I think the thing that you have to try and do is stay as normal As possible, until you know at least the journey ahead. I remember being first diagnosed, my life stopped but then something changed and I realised I need to be me again, regardless of what's happening and what will yet come. It was tough I was a different person and had to work out how I should now be. But just be you. The pair of you. And talk.....make sure you are honest with each other. I still find this the most difficult, but I live on my own and ignore what's going on and pretend I'm perfectly fine.
Try and have a weekend of relaxation, see a film, eat some cake, have a glass of prossecco or something else you fancy. If anything, this wakes you up to lofe too short regardless if your 21 or 91!! Time becomes irrelevant especially when there's illness! Don't waste your time thinking about the illness whatever happens will happen!
A difficult day today but I knew it would be. The in laws have returned home and the visitors are at work so it's just the two of us and the enormity of it all is washing over us in waves. Half the time it's like it's happening to someone else and the realisation that it's happening to us feels like an anvil dropping into my stomach.
Alison - my wife - is still in a fair bit of pain on her right side which worries me considering she had her biopsy on Thursday so will try to speak to her gp today. She also seems to be losing weight by the day, like she's disappearing right before my eyes. As you can tell though I'm quite the worrier so this could be me looking for bad signs. Sincerely hope so.
When I was first DX I lost a lot of weight, they put me on something called 'Fortisips' they are high calorie shakes, they contain about 300 Kcal in about 200ml so something that is feasible to 'eat' they have lots of flavours and are great to keep the calorie intake up. I was put on these along with eating whatever I could manage. It might be worth speaking to your medical team or GP see if you can get some ordered. Failing that there are always the 'complan' or something similar that might help!
I would definitely get the GP to check her over with her pain, with her being poorly she will take longer to heal and will notice the pain more. It might be normal but definitely get it check, where she's concerned there is never too much worrying.
I used to worry about the bigger picture and how I was going to get back to where I was, but I stopped worrying about those things, I started focusing on the next thing in my life, whether it was getting through the next GP appointment, sorting out my NHS Medical Exemption card (Your entitled to this), I broke my life back down and delt with it in small manageable chunks.
How are you? People forget about family members and how they are coping....I hope your eating and looking after yourself best you can.
Thanks chelle, I find your replies very comforting. Al's eating has been a little better (possibly under threat of the complain!) and we're varying the diet as much as poss, sneaking cream and bacon into things for the calories!
Waiting for a call from the gp so will hopefully get the pain under control in the next day or so.
I'm doing ok, up and down. I'm eating well, eating the same things as Al so it still seems a bit 'normal ' a few dark moments throughout the day and particularly at bedtime but managing to sleep ok.
Big day tomorrow, unfortunately seeing Dr Bad News so not expecting much joy from the appointment. A friend of ours is coming along with us which will be a great support. She's a very experienced nurse so will know the right questions to ask if we're not able. I think the best we can hope for is a diagnosis and referral. Don't want to get into prognosis etc with him.
Things with me are rocking along ok. I really hope you both find some better answers. Having a friend is great they do as the right questions. Steve came with me to an appointment with my liver specialist; I was rocking along quite nicely going on my own....he came asked a few questions that I didn't want to and I ended up on the transplant list....still working out if he's allowed to come to appointments again!
Write things down. I took probably a 4 page of questions things that were really silly....well to others they were hit to me they were important!
We'll today's the day when we find out what we're dealing with and what the future will bring.
An emotional night last night but we both had our best sleeps for a while, only to be spoiled on waking up to the dry mouthed, tight chested cortisol rush that is pretty much my default state at the minute.
A tough start to the day. Al worried that she's 'riddled with it'. Has more pain towards the left of her upper abdomen and sounds a bit breathless. Trying to reassure her that it would have shown on the ct scan and that her sleeping position or biopsy recovery could be causing the pain. Can't hug her properly because of the pain!
Going to be a loooooooong stressful, scary day until our appointment at 4pm. Trying to be strong but finding it hard to see any positives coming from the consultant
Hey. How did you appointment go yesterday? Have they assigned you a nurse yet one from Mcmillian? They are terribly wonderful. They can help you with so many things you don't think of or all of those things you think are unimportant.
I hope you were given a clearer picture and a positive way of moving forward xx
We had some very positive news from the consultant yesterday. He told us that Alison has a neuroendocrine (sp?) tumour which is very slow growing and very treatable. He wants to do an endoscopy to look for the possibility of a blockage in the bowel and potentially insert a stent. We will get a referral to The Christie through in about 2 weeks. He didn't discuss seeing a Macmillan nurse.
He says the tumours on the liver could have been there for years.
We were so scared yesterday and the relief when he told us this news was incredible. We feel like we've got our future back. We know we've got some challenges ahead but we have something to fight for now.
The endoscopy is scheduled for next Friday which Al isn't looking forward to but understands that it could potentially mean she can return to a normal diet. We eat quite well normally and she's missing her fruit and veg.
We've got some Liquid Feed through the gp to help with the weight loss but hopefully she can get back to eating properly soon.
I wouldn't have got through to this point without the support from friends and family and your kind, positive messages Chelle. Thank you.
Oh I am so happy for you....I am so sorry you were fed information that put such a shadow over your lives!
Endoscopy's aren't nice, I have them every theee months and have done for more than 3 years. Get her to have the sedation, she will be offered banana spray for numbing the back of the throats....I don't have it it's horrible....more like rotten bananas!
Get in the mcmillian website they can find someone for you both to talk to and talk through things that might help....especially when going through treatment, wether it be your wife worrying about potential hair loss or the pair of you paying everyday bills.....they will have then at The Christie!
Take some time out....get a few days away! Relax and worry about the next step when it arrives!
Hi chelle, it's not her throats that will need numbing I'm afraid...... but it has to be done and it's with a view to a positive outcome so that makes it more bearable, and she will definitely ask for sedation.
We're definitely going to enjoy the weekend, our whole outlook has changed and although we know there are tough times ahead we can look forward to Christmas and holidays beyond.
Macmillan is definitely something we will be using, and will get in touch with them in a few days after we've digested our news.
I can't begin to tell you how your posts have helped me through this up to now.
Oh she's going for a Colonoscopy? That's not nice either! How did it go was it Friday just gone she had it? How are you both feeling now? Now you have had a chance to digest the news as you put it...did you manage to have a 'normal' weekend? It must feel like your living the life of someone else right now.
I am so please you received some better news, it's so tough to be tough and strong when your so shocked and confused by news. Almost takes the breath out of you....
Makes you realise that nothing is sacred and you have to cherish every moment.
Weekend was good, had a few visitors and managed to spend some time in the garden which was nice. It's amazing to feel positive and to be able to talk about Christmas and holidays again.
We're doing well, not doing too much research on NET's, think we'll wait to speak to the consultant in a few weeks. Seems it's such a specialised area that we might be giving ourselves the wrong info.
The colonoscopy is meant to be this coming Friday, we're just waiting for the time.
All this certainly helps to put things in perspective. If we can take any positives going forward it's that we won't be fretting over trivial things any more.
Al's not having the camera today. The GI consultant wants to speak to the oncologist first and he's not managed to do that yet. His secretary says we should hear something soon. We've not had any other appointments through yet but I suppose they need to discuss it first.
Picked up a letter from a GI surgeon sent to our original consultant and the consultant oncologist and cc'd to the gp confirming metastatic neuroendocrine carcinoma. Horrible to see it in black and white. It's given me the jitters over the last couple of days but I'm keeping what the consultant said to us in mind and remaining mostly positive.
Al's tired today. Had a busy week with visitors so we're having a day off today. Al's resting in bed with me force feeding Liquid Feed to her and I'm in the garden with a brew and a paper.
Finding things Al enjoys eating is difficult. She's fed up of white carbs so a little bit of steak and chips last night and a Sunday dinner later. Nice to get back to proper home cooked food.
She tends to get a lot of pain in her stomach about 3 1/2 hours after eating so trying to keep on top of that. During the day she's mostly ok and not needing much pain relief but night time is hard for her. Doc prescribed tramadol but she's wary of taking them, seems the co codamol is working for now.
Pain from the biopsy has pretty much gone although she does occasionally get a sore shoulder but we think that's from lying on her back all night and not moving so much.
We managed a little trip to the supermarket yesterday and a visit to her sister. Al was able to walk back home. Only a 5 minute stroll but it was good that she managed to get out and have a little exercise.
Visitor free again tomorrow so another restful day for Al before her mother comes to stay for a few days. Please don't worry about me though, I can handle it!!!
Many thanks for your message and for thinking about us. We're finding out that there are some truly wonderful people in this world, both friends and strangers.
A bad few days this weekend. Al very, very tired and not able to do anything. Also in a lot of pain, especially after eating, which is another thing that makes it difficult for her to eat. A few tears yesterday as well which is not like her at all
I think fatigue is very much a symptom of cancer and I suppose not eating too much and being in pain is making things worse but it's a worry.
First appointment for Christies came today. We'll meet Al's oncologist on Friday 15th. Glad it's finally in the diary but naturally worried about what it will bring. Nothing about the endoscopy yet but I imagine that will be organised by the GI team.
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