Primary Liver Cancer.

[Kellys_Eye]

Hi, I would like to know if anyone has had or know of anyone who has had Primary Livery Cancer.??

Has anyone one any information on the operation involved, the tumor is half the size of the liver.

The operation will only go ahead if the cancer has'nt spread the results of the scan will be given to me on the 13th July.

I need to know how big an operation is involved and what sort of time recovery is usual (I know everyone is different - but just an idea).

I am very worried and I have looked up just about everything that I can look up.

I really just thought someone on here may have had some experience through knowing someone or perhaps themselves.

I don't think I have posted this in the wrong place as I am only after some helpful information.

Thank You for any help you may be able to offer.

[bobsa1]

I'm really sorry I can't offer any advice but just wanted to send best wishes and bump this up a bit!

[Kellys_Eye]

Thank You bobsa1.

I have spoke with the consultant and they have said that they will operate if it has'nt spread and I have just had an MRI scan and a CT scan and told that I will be given the results on the 13th July.
He never got round to explaining the depth of the operation as he wanted these scans first, and being quite alot in shock as I had just been told did'nt think to ask there and then everything you want to know but don't think of until the next day or two when it starts to sink in even though it has'nt sunk in properly yet.

I was just told to cancel my holiday at the end of September as I would'nt be well enough to go.

[Hellfire]

the operation to remove a tumour of that size is pretty major, i would think. the good news is that the liver is largely self regenerating, so normal liver tissue should grow back. however i'm not a doctor so please don't take my word for it..:o

my best wishes go with you.

[Westywoodpecker]

Really you need to have your scan results before you can plan ahead. Your Consultant should then be able to tell you what is involved and how long you will be in hospital. I know it is a difficult time and you are bound to be worried, but try to take things as they come if you can. This inbetween time can be very difficult. Welcome to MSE, I hope you get lots of support and I wish you all the best.
Jackie xx

[Kellys_Eye]

Thank You both for your replies.

Yes I know the thing is to wait for the consultant but as you say this in between time is horrible.

The worst part about this is if there's a worst part, is they should have found this 12 months ago, they have been looking in the wrong place in my bowl and have not completed one test on my bowl as I was quite ill after that stuff that you have to drink to empty the bowl clled Fleet so they could do an Colonoscopy they had ago 3 times I drank the stuff and it made me very sick so they never completed a colonoscopy.

Whay started this was my haemaglobin dropped very dramatically and I was freferred to a consultant as they said it usually means that you are bleeding internally so they went for the bowl even though I told them I was getting a pain higher up on line with my stomach, they said it is probably a pain from the bowl and I was'nt having any trouble with my bowls at all.
Then on th 30th April this year a large lump came out of my side where I had complained of the pain and they thought it was a hernia !! so they sent me for a scan the very first scan and the results came back that I had a large tumor which they told me was a primary liver cancer tumor and I needed to have more scans hence the MRI and the CTs.
And this is where I'm left at present, they said it has been there about 12 months I first saw the consultant on the 21st July 2005 and it has took this long to get to this point.

I also think there has been some negligence along the way and hope I have the energy and know how to sort this out too.
Anyone any advice on this sort of thing too.??

Sorry to go on tonight but things are getting a bit much today and needed to ask for any information or advice.

Thanl You all for any help you can offer, I am only 54.

[Eagle_1]

Sorry I dont have the info you need but just wanted to say I hope everything goes ok. Keep posting here if you feel like a bit of a rant/moan/chat or whatever just to help you get through this.

Sorry I cant help you but just wanted to let you know I am thinking about you.

[Agutka]

I second Eagle_1 in wishing you all the best.

My grandmother had primary liver cancer due to hepatitis C. It was found pretty quickly, but it was followed by an all-body investigation. Because liver cancer is mostly secondary, they were looking to see where it originated. Primary liver cancer I believe is pretty rare, which may explain why in your case they didn't home in on it - although why no one gave you a simple ultrasound with tummy problems... that would've shown up the mass.
Anyway, self-regenerating livers are fantastic - they can leave what 10%? 30%? and you won't know the difference.

Write down a list of questions, worries which may pop into your head in the next week and take this list to your appointment. Don't leave until you're happy they have all been answered. That is part of the doctor's job.

Good luck again.

Agutka

[Savvy_Sue]

You may find it helpful to contact PALS (Patient Advice and Liaison Service) at the hospital where you've been seen - every hospital should have one! Some of us have found them very helpful in resolving 'issues' - it's not a formal complaints procedure, the intention is to make sure that if things could be done better, the hospital knows this.

Also it may help you to find a support group: googling, contacting some of the cancer care charities, or phoning your consultant's secretary are all ways of doing this.

Love and hugs!

[Kellys_Eye]

I really appreciate all your replies and your help.

I don't want to pass doom and gloom around but needed to tell or ask for help as I was hoping someone may had had some experience in some way or other and many times other people's experience's can help other people through these things.

This is a very hard thing to take in and it still does'nt seem real, I am trying to be more positive and have found out about some stuff called Wheatgrass which is suppose to help people with kidney and liver cancer as it goes to the enzymes in the liver and the kidneys and is suppose to stop it from spreading, so I am giving it a go also.

This is the site I found
http://www.cancertutor.com/Cancer/Wheatgrass.html
you can make your own judgements.

I would like to Thank You all again for your replies as they really do help.

[Dora the Explorer]

Sorry about your rotten news, so best wishes and good luck. There is subsantial cancer information, resources, support, telephone helpline here

http://www.cancerbackup.org.uk/Home

You can also email bacup with your questions for a quick personal reply, and it has drop in centres in some large cities. It has an excellent reputation and is supported by government funding. HTH

[Kellys_Eye]

Just a quick little update.
I go in the morning to see the consultant surgeon to find out if it has spread or not as he will have my results from the MRI scan & CT scan, and i believe he's called one of those multi-disciplinary-meetings.

Fingers crossed and everything else.

Appointment at 9-35am July 13th.

Kelly.

[Westywoodpecker]

All the best, we are all rooting for you. Keep strong & we will be thinking of you on the 13th :kisses3:

[Kellys_Eye]

Thank You Westywoodpecker.

I like your signature by the way its cute.

[Kate Smiley]

Hi Kelly, praying for you and sending my love. Write down your questions so you have them for tomorrow. Its hard to remember everything. The Macmillan nurses are great - and may be attached to the hospital. Worth asking about them as they can have time to talk to you, and you can contact them anytime. Cancer backup phoneline is great too for any questions and concerns you may have - trained nurses and can chat or get you loads of info. All my Love xxx

[cattie]

Hugs Kelly, been thinking of you & hope & pray you got on ok.

As mentioned here the Macmillan nurses are great. They helped look after my sister after she went into stage 4 cancer.

[twink]

yes i was thinking of you today too, love and hugs to you xx

[Kellys_Eye]

Thank You everyone.

I'm afraid I'm left feeling abit numb and lost again.

I saw the consultant surgeon today and he explained things very nicely to me, was a very pleasant man with a lovely manner and very calming.

He told me that it looks like it has'nt spread but as the tumor was in the middle of the liver covering sections 4, 5, 8 ( as the liver is in 8 sections ) he would need to do a laparoscopy so he could do a biopsy on the healthy part of the liver to check that it was healthy enough to cope with such a big operation as he was going to have to take away 2 /3rds of my liver which is a lot as it takes the liver 4-6 weeks to regenerate back to normal size but not the same shape.
It needs to be really healthy the bit that will be left, so I will be going in for this in the next 2 weeks and hopefully if this is well I will have the big operation in the next 2 weeks after that.
I have been appointed a specialist nurse that I can contact at anytime through all of this which will be very helpful as I'm sure when its all sunk in again I will have a list of questions for her.

Thank You for letting me share this with you all as I feel abit rubbish at the mo about it all.
Will keep you updated.

Love to you all Kelly.

[Poppy9]

Great news it hasn't spread. Best wishes for the op.

[seven-day-weekend]

Praying for you NOW Kelly.

[owey]

Hi Kelly,
Have you had a look at this web site, James Whale had kidney cancer "size of a football" and they have a support page as well, hope it might be of some help. Even give James a ring on Talksport 10 till 1am monday/thursday "his bark is worse than his bit;) ,as he has been through cancer as well, and still going strong. Keep well and stay postive, all the best.


http://www.jameswhalefund.org/Contact.html

Site will not be fully ready until September.

[Kellys_Eye]

Thank You owey, will take a look at the site.:)

[Agutka]

Wishing you all the best for your hospital stay and op. Don't forget to feel well all the time!

[Kellys_Eye]

Just a quick update again.:)

Got a letter today have to go into hospital next Wednesday 26th July for the biopsy, doing it under general anestetic so may be in a couple of days don't really know.
Will give the specialist nurse a ring tomorrow and ask her, could'nt do it today as I had to take my mum to the hospital for her CT scan !!! she's not been well too.

Will keep you posted, Thank You for all your kind thoughts.

And yes Agutka will do my best to be feeling very positive and to get through this.

Congratulations on your wedding by the way.:j

[Agutka]

Thank you very much and all the best again to yourself and your Mum

[shelly]

Hi Kelly. I have only just found this thread but wanted to wish you all the best for the future. I kind of know how you're feeling as I was diagnosed with cervical cancer on 25th May this year. I had my cervix removed 2 weeks ago and I'm waiting on results as to whether it had spread to my womb, if so I need a hysterectomy.
Keep strong and positive and don't feel odd if you have "off" days. I feel Iv'e come to terms with it but still get days where I'm down, its perfectly normal.

If you just want to chat or vent or whatever please feel free to pm me.


shelly xxx

[Edinburghlass]

Kellys_eye, please do phone your appointed specialist nurse even just for a chat, these people are absolutely ace and if they don't know the answer they will know a man who does.

Same with the MacMillan nurses, Backup etc and if you have a Maggies Centre attached to the hospital.

:)

[klondyke]

Just found this thread - wishing you all the best, Kelly. I, like Shelly, know a bit about how you are feeling as I was diagnosed with colon cancer back in February. GP thought it was colitis as I had had that before, but I kept telling her there seemed to be more going on because of different kind of pain. Eventually got referred to specialist for colonoscopy - also had to have the dreadful drink, but I don't think mine was called Fleet. Anyway, tumour discovered and I was referred to surgeon who wantd to act asap but needed CT scan, also asap, so that he could see exactly where trouble was - though he could feel the lump easily on external examination, and was somewhat cross with GPs for not examining properly as I was 'close to total blockage'.

Fortunately, or unfortunately, depending on how you look at it, when I got to hospital expecting surgery they said there was a change of plan as the CT had shown up a pulmonary embolism and several other blood clots and this needed to be addressed first as, if they went ahead, I 'would die on the operating table'. So I had more horrid drink prior to be taken off to another hospital to have tumour put in stent to try to stop it growing further towards blocking the colon completely. I should have returned to original hospital same day, but horrid drink had made me quite ill and doctor said he didn't dare send me back in that state as they would think he was a bad doctor!!

Anway, eventually back at first hospital for a couple of days, while they hummed and ha'd about operation as to how long they dared leave the tumour and how soon Clexane and Warfarin treatment would make it safe enough to go ahead. Eventually the decided to send me home for a while to gobble Warfarin tablets, have a further CT and then decide op date.

Ah well, had op in March, they needed to take ovaries and fallopian tube as well (in view of my age, that wasn't a problem!) but surgeon did say it had been a tricky operation and the tumour was 'huge'! I was in the high dependency unit for several days, before getting back to 'ordinary' surgical ward. At that time still very painful - but don't worry, it does get better and you need to make sure you take plenty of painkillers and don't ty to brave it out.

They wanted me to go on chemo as soon as possible, especially as next CT scan showed liver metastasis. Grrrrrr. Anyway, I have had five goes at chemo (Folfox) so far, ie once a fortnight. and will go on until 12 cycles.

Some quite weird side effects, like not being able to handle anything cold; need gloves by the fridge! But oncologist is pleased with me and thinks I look a lot better. Another scan 14th August should tell whether chemo is working, so please keep fingers crossed for me.

Nurses are wonderful - and do ring the specialist nurse with any questions. Mine was great, though I have just been told she has ben promoted, so will no longer be my contact. Hope the next one will be as good!

Sorry to hijack the thread - didn't mean to rant, but want Kelly to know she's not alone - we can get out the other side!!

[saraht]

Kelly,
I have sent you a pm, so click at the top of the page where is says 'inbox'.

Hugs to you.
Sarahxx

[Eagle_1]

Sorry to hijack the thread - didn't mean to rant, but want Kelly to know she's not alone - we can get out the other side!!

Not my thread but hey thanks for that, its great to hear other peoples stories because they do help.

Hope everything goes ok with you and I will keep fingers crossed for you.

[Kellys_Eye]

Hello everyone another quick update.

Your right Eagle_1, it is very interesting to hear other peoples storys as they can be very helpful and informative.


I am sorry I have'nt posted sooner but I have'nt been too well since the laparoscopy liver biopsy.

They told me that they would'nt have the results for 2 weeks !!, but they have booked me to go back in this Tuesday the 8th August to have the operation on the 10th August as I have to have a couple of days injections of vitamin K something to do with clotting.

I expect they will have the results when I go in on Tuesday.

If you don't hear from me for a while you know they will have done the operation and I will up date you as soon as I can, I don't have a laptop so you will have to wait till I'm well enough to get to my computer again.

Feeling very nervous, but Thank You all for your in put and your helpful links and kind words.

Thank You all again and I will be intouch as soon as I can.

Love Kelly.

[Eagle_1]

Hi Kelly, thanks for letting us know how you are doing.

I just wanted to let you know i'll be thinking about you when you go back to the hospital.

Take care and do let us know how you get on.

[ceebeeby]

Hi Kelly,

Thanks for letting us hear how you are. I'll be asking for a speedy recovery for you in my bedtime prayers tonight. Keep strongxx

[klondyke]

All the best, Kelly - will be thinking of you.

[twink]

take care, love and big hugs to you, i will be thinking of you too xx

[shelly]

Hi Kelly. Thanks for the update.

You will be fine, try not to worry, all the best for the next few days and the future.

[meerustar]

This is the first time I've seen this thread, so I just want to say 'Good Luck' and keep smiling.

From your first post I notice that you think you may have been misdiagnosed and that you may want to do something about it. I just want to say forget about that for now ... concentrate on getting yourself better!!!

You are in the best hands... however much we tend to knock the NHS in this country, the doctors do know what they are doing and are some of the finest doctors in the world.

Listen carefuly to what they tell you, don't be afraid to ask questions but at the same time, don't expect immediate answers. If a doctor can't give you an answer about something pre or post op, then don't take it that he is keeping bad news from you ... they sometimes have to take more tests rather than guess an outcome.

Anyway, good luck with everything, you CAN get through this, you know you can ... and it makes saving a few bob in Boots or Tesco pale into insignificance!!!

You go girl ... we're with you all the way xxxxxxxxxxxxxxxxx

[icecoolbabe]

I'm so pleased this thread has been allowed to run. I have seen threads in the past where people appear to have been looking for support over a medical issue and it has been closed - possibly because it has either thought to be asking for medical advice or someone inadvertently offered it.

Threads such as this are absolutely vital sometimes and may be the only line of support someone gets.

Perhaps we should have a medical support thread - not advice - but where people suffering the same condition can be put in touch with each other, and then communicate by PM even - if they need support for something.

Good luck Kelly in fighting your battle.

[shelly]

Totally agree icecoolbabe. A forum/section just for support during times of need is an excellent idea. I gained brilliant support on a thread of my own during the time of my cancer diagnosis. I have good support from hubby, friends and family but some people aren't lucky enough to have all that.

[elona]

I just wanted to wish you luck.

Please use Mcmillan nurses - they are fantastic!

[Westywoodpecker]

Hi Kellys eye.

I'm so glad your getting support off the thread, as I knew you would. I also think threads like this are such a good idea as not everyone has the support at home unfortunately & talking to people who have experienced this sort of thing helps. I hope you use the support groups previously mentioned as they are very good.

Hope your able to keep stong & positive, keep in touch Westy.

[barjam]

just noticed this thread also..... stay positive kellys eye :beer:

[Kate Smiley]

Hi Kelly, just wanted to let you know I was thinking of you and I hope you recovering well from your op
Katey xxx

[skintarooney]

Hi Kelly, have just noticed this link and wanted to also add my best wishes for you. Hope you have a speedy recovery from your op. Thinking of you! xxx

[Eagle_1]

Hi Kelly, I was wondering how you were doing. hope you are well :smiley:

[Eagle_1]

How did the op go?

I have also been wondering how things went, yes it would be lovely to have an update.
Hope alls well kelly :)