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DF daignosed with bowel cancer and secundaries to the liver. Please help...

(20 Posts)
VinoEsmeralda Mon 07-Sep-09 18:08:25

My dear dad was diagnosed today as having bowel cancer with secundaries to the liver. Inoperable but if the large tumor (near anus)causes any problems (blocking) they will give him a stoma. Chemotherapy will be discussed tomorrow. DM/DF were both numb and didnt ask many questions but will see a specialst tomorrow. Any advice on what to ask/ to epxpect

Also any tips on good boooks explaining this to a 4 and 5 year old? Will obviously wait with telling them till next week when I can hopefully talk about it in a less emotional state then I am in now!

Also so crap I live abroad!!

ThingOne Mon 07-Sep-09 19:10:31

Sorry to hear your news.

I was diagnosed with rectal cancer two years ago at the age of forty. My c 8cm tumour was low down so I have a permanent colostomy.

I had five weeks daily radiotherapy, which caused catastrophic ovarian failure and an instant menopause. The first and fifth weeks I also had a small amount of chemotherapy. My tumour shrank well and they were able to remove it with a safe margin.

Must go, bedtime.

In the meantime go to cancerbackup.org.uk but nowhere else.

VinoEsmeralda Mon 07-Sep-09 19:16:45

I am very sorry to hear that ThingOne, I hope it means you are clean now?

I hope my dad will get a colostomy as he has chronic diarrhoea and it would mean a better quality of live IMO

His tumor of the bowel is 10cm and also near rectum but not sure if that is only tumor as they were so numbed when they heard the news i bet they only heard snippets of the conversation.

Will check out the website - thank you

paddingtonbear1 Mon 07-Sep-09 19:21:17

Hi, really sorry to hear this.
My mum had bowel cancer with liver secondaries. It was really hard to find, she'd had symptoms for ages but they'd put them down to something else. The consultant who found it said she could have had it for up to 10 years!! They did operate on the tumour in the bowel, then she had chemo which knocked her for six - it was very strong stuff, taken in pill form I think.

dd was only 1 at the time so we didn't explain much - she did see mum but didn't really understand what was going on.

all the best, the specialist should outline all the options.

paddingtonbear1 Mon 07-Sep-09 19:22:51

mum didn't have a colostomy btw - I don't think she could have coped with it, although she did have bad diarrhoea like your dad.

Northernlurker Mon 07-Sep-09 19:26:26

First of all a big <<hug>> for you. What horrible news for you and how hard to absorb it from a distance as well sad

Ok - well inoperable doesn't mean untreatable to reduce and ameliorate symptoms - that will be what they're talking about tomorrow I guess. Can you e-mail them a list of questions do you think? Would help them remember what to ask and if they can say 'it's for our daughter who lives abroad' then it may reduce any embarassment they feel about asking questions. Some people really don't like doing that and would rather just agree with every word the doctor says.

Things to ask - when, where and for how long would treatment take place - is it local or will he have to travel to another hospital for example.

What are the risks of treatment?

What are the proposed benefits?

What alternatives are there or what happens if they do nothing?

Can you (or they) e-mail the consultant with other questions or is there a nurse contact you can use.

What other support for them is there - could they speak to a hospital social worker about finances (if that's relevant, you don't say how old he is)

Regarding your children - can't think of any books particularly but I firmly believe in giving children as much truth as they can handle - so don't tell them Grandad is just poorly - because they get poorly too and it's confusing. Draw them pictures of cells and show how they grow, explain how their cells are growing normally but Grandad's cells have done that too much. Then be guided by their questions.

All the best

VinoEsmeralda Mon 07-Sep-09 21:04:47

Paddingtonbear - I Am sorry to hear your mum has been through the same sad

Northenlurker - many thanks, very helpful! I never thought about emailing (or calling) the consultant myself, brilliant idea.

I have sent them an email with questions I'd like them to ask but as you say they are definately of the yes doctor, no doctor category so will see what they have to say tomorrow. They are in Holland which is sort of a relief as healthcare is good there Financially there is no worry as far as I am aware.

thanks for the tips re drawing cells etc.. as I would have gone for the Dutch approach and call a spade a spade but that would have gone down like a lead balloon!

Many thanks again!

ThingOne Tue 08-Sep-09 00:25:47

OK back now. Forgot to say I was going out after bedtime. Have had a few glasses, and will be cogent another day wink. Sorry it's a bit long but these drunks do like the sound of their own voice.

OK - I was treated under the current NICE protocol for non invasive colorectal cancer. 'Twas only later they discovered the liver secondaries.

I was told about the liver abnormalities after my initial surgery. I was sent for an MRI as a "belt and braces" thing and was shocked to discover there were two secondary tumours on my liver.

The NHS now has specialist liver units so instead of being operated on by a general surgeon who does, maybe, two liver resections a year, I was sent to a specialist unit in Basingstoke (I live in the SW) where there are three or four liver consultants. So being at home is not always the right approach. I must stress that my secondaries were very small (about thumbnail size) and easily removable. I had keyhole (laparascopic) surgery to remove them. My recovery was incredible. I would expect that the Netherlands now too has specialist liver surgeons. Do not let anyone go near your father's liver unless they are a specialist. I mean this from the bottom of my heart.

After my the initial surgery I was told I needed twelve cycles of a chemotherapy commonly known as "folfox". But this was before the secondaries were discovered. In my case, as they were so small, and there was no evidence of the cancer having spread other than these small secondaries, they continued with the initial plan. Again, these twelve post-operative cycles of folfox are part of the standard NICE regime for colorectal cancer.

Folfox is given over 48 hours or so (mainly at home) every fortnight or so, so 12 cycles should take less than six months. Of course with cancer there are always complications, and you need to get your head around the fact that things will not always go according to plan. Some bits do, but it's unlikely that the full course of the illness/treatment can be predicted.

I had my chemo through a Hickman Line. I got sepsis and my treatment was delayed.

I ended up with a diagnosis in August 2007, and after surgery and complications I still have more surgery planned, possibly next month (though swine flu may knock me out until the spring). I should be OK. There are no guarantees with secondary cancer but some people do survive.

I can't tell your dad can be one of them but I can tell you that a friend I have met through all of this had eight secondaries in her liver five years ago. She had more chemo this year and the liver surgeon was prepared to do another resection this summer. You can have 75% of your liver removed and it regenerates very quickly, just like Doctor Who.

Anyway, less blethering, children. Use the words cancer, chemo, tumour. They need to know this is not an ordinary illness lest they start fretting that they need to go to hospital with a cold. Or get pipes (hickman line) when they have a sore bottom. Winston's Wish has some good stuff. I've also had some help from my local hospice but that's because it's me that's been ill. Your local hospice may have resources to share.

Ben je nederlandse vino? Ik woonde anderhalf jaar in Amsterdam enkele jaren geleden. Misschien nu ben ik een klein beetje out of practice.

onebatmother Tue 08-Sep-09 00:32:49

Brilliant post, ThingOne.

Sorry you've had bad news, Vino. I've experience of ovarian cancer (my mother) but not bowel - this info sounds v useful though and fits with my mother's experience.

VinoEsmeralda Tue 08-Sep-09 08:57:01

Thingone - ja ik ben inderdaad Nederlandse.Good Dutch writing- am impressed especially considering you've had wine grin !

Onebatmother - hope your mum is doing ok? Amamzing how many people are gonig through similar situations!

You might have heard of Daniel de Hoed Kliniek in that case. My mum will try and get his treatment referred to the above clinc as it is a hospital specialising in cancer only.

Today they wil see the surgeon who might have to do colostomy if the situation arises of bowel blocking and tomorrow the chemo plan will be discussed.

Spoken to my mum again last night and he has one 10cm tumour near his rectum (only if he would have gone to GP earlier as would have been relatively easy to treat otherwise- gone n for over three months before he went to see GP -GP didnt act untill my mum pushed him a month later) with the chemo and prolong live that way.

Will tell DC next week as they were expecting to go to Holland half term but thats not going to happen now unless i hire a nearby caravan or so (hmm worth thinking about)

pingapengin Tue 08-Sep-09 20:11:53

Hi i hope you dont mind me replying, im new to mumsnet.

My dad had bowel cancer with Liver secondarys, his bowel cancer was inoperable when diagnosed so they tried chemo and radio therapy first but unfortunately it didnt work. He started with constant diarrhoea but then became blocked so under went surgery and had a stoma bag.

Sadly my dad died, they found lung tertiarys and his bowel tumour bleed and they couldnt do anything for him.

But we meet alot of people who had the same and they are all doing well.

Sorry my post is a bit depressing.

Best wishes.

norksinmywaistband Tue 08-Sep-09 20:21:33

my realative was diagnosed with bowel cancer with liver and lung secondaries 8 years ago. He has had lung surgery, bowel surgery and 70% of his liver resected.
He has also had lots of Radiotherapy and chemo.
He has been well until now and his life apart from the surgeries has not been affected.
He is unwell nowsad but is fighting on.

Hope your dad gets the best treatment possible

Onlyjoking Tue 08-Sep-09 20:43:30

sorry to hear about your Dad, i don't have much knowledge of this type of cancer, my husband had a brain tumour so different treatment.
with regards to books one of the books i got for our kids is called the secret C its written by julie stokes (winstons wish lady)

VinoEsmeralda Tue 08-Sep-09 21:20:21

Thanks OJ will look into getting that book. Do you think this would be suitable for a 4 and 5 year old as know your DC are older when Steve was battling with his cancer?

Pingapengin- I am very sorry to hear the outcome of your father's illness. If I may ask how long from diagnosis to death? My dad is still in denial and hasnt asked this question but googled it and prognosis isnt good.

Thank you for you kind words Norks! They wont operate on my dads liver as today they heard he has 2 large tumours on the liver (left and right side) and I think also because of his age (67)He has lost a lot of weight/energy, is weak and an old man really, sad but true.

Later this week he will have a CAT scan and a MRI to, hopefully, rule out more secondaries. And fingers crossed I really hope they get him referred to the Daniel de Hoed.

pingapengin Tue 08-Sep-09 21:30:26

It was just over a year from diagnosis. He was told it was terminal after about 7 months.

He also lost alot of weight and was very weak, he was so positive thoughout thou, i was very proud of him!

Fingers crossed for your dads scans.

paddingtonbear1 Tue 08-Sep-09 21:51:20

hi again really hope you're doing OK.
my mum unfortunately didn't make it - this is 5 years ago now. They couldn't operate on the liver secondaries - they were over too large an area - and she couldn't take the chemo so had to stop. At diagnosis they gave her 6 months to 2 years, she died after only 6 months. Sorry to be so depressing!! She had had it undetected for a long time though. She was cared for at home, mainly by my dad with us visiting regularly. Their local community nurses were fantastic - we bought them some flowers and chocs after!
sending you my best wishes xx

ReneRusso Tue 08-Sep-09 22:09:59

So sorry for you and your family. My dad had bowel cancer with liver secondaries. We thought he had only months to live as the liver tumours were inoperable. However he lived for 7 years following the original diagnosis. He was not horribly sick for much of that time, just the last few weeks. He had periods of remission and lived a good quality of life. He was treated with a drug called 5-FU which was delivered direct to the liver via a small tube. Don't know technical terms. This is going back a few years ago so treatments may have advanced a lot.

VinoEsmeralda Tue 08-Sep-09 22:11:45

Thank you for the replies again,it is very good to hear experiences first hand whether they are positive or negative.

I think my attitude is slightly pessimistic to be positive when we hear good news IYSWIM. Always seem to deal with negative things that way and as my dad says, I will just take it a day at a time.

Onlyjoking Wed 09-Sep-09 09:27:23

I think taking it a day at a time is wise.
i think that book would be suitable for younger children, my 3 are older but have autism, i was able to pick bits out of it to read to them.

VinoEsmeralda Wed 09-Sep-09 19:33:31

Cheers OJ- will order the book in a mo

Spoken to my dad who is very positive and he says he hopes to live for a couple more years and if not, well c'est la vie. He has also made an appointment with the GP re euthanesia, to make sure he has all in order just in case he sees no way out.

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