Very large tumour.... treatment options

Hi 

Although I'm not a member of this group I was passing and noticed that you hadn't had any replies. This could be because nobody in this group feels they have the relevant experience to be able to reply or just that they simply haven't seen your post yet.

While you're waiting for replies you could use the search facility in this group to look for previous posts on this topic. Alternatively you could post your question in ask a nurse and one of the specialist cancer nurses will respond within 2 working days.

I have found this information about TACE for you on the site although I realise that it's better to hear people's first hand experiences.

When you have a minute it would be really useful if could pop something about your father's journey so far into your profile, as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

I had a very large Tumour size of a Football and had a operation with 11 tumours behind this.

They did say they would not operate but did after biopsy.

Then had 10 tumours after which were treated with Tace

Then another op so not much liver left .

Now Taking Regorafenib as Liver has been clear but now in my heart.

So you may get more answers after Biopsy.

Hope you get answers soon.

Hi Wwood

Thank you for your response, that's very useful to know. I'm sorry to hear about your heart and i hope that can be treated with the drugs you are on. 

Could you let me know where you were treated for your liver and who did the liver operations? Did the Tace help to shrink your tumours?

I wish you well also. 

Hi Thankyou

Yes Southampton Hospital Mr Armstrong Amazing Surgeon done both operations one 2016 Jan one Nov 2016.

Tace worked each time in bewteen ct scans first year 3 or 4 tumours would grow had Tace 4 times.

one tumour they could not get with Tace is why they done the second operation.

Yes Tace worked since December 2017 I have had no tumours in my Liver. Have scans every 3 months.

But they always said they can come back at anytime.

Yes so crazy to get it in my Heart and no Op for that 

Year ago today I was rushed to hospital given 2 hours to live !!

Then sent home with less year to live so Doctors do say all bets are now off.

My poor Family have been amazing my Children keep giving me Grandchildren  5 under 4 years so have lots of distractions.

Let me know how you get on need any questions can always try to help.

I work in NHS so had a lot of support from my Doctors too.

Did have SORAFENIB last year but broke My ankle had to come off it.

Had Radiotherapy too on Heart.

So have had a lot of treatment 

Wendy

Hi Wendy

Wow you've had an incredible journey and sounds like you've had great care and a wonderful family to help support you. I think that's so important and must help you fight this. My dad has grandchildren too and they are a great distraction. 

That's so kind of you to share your story and thank you so much for offering to answer any questions. I do have lots but i guess won't know fully until after the biopsy. I am intrigued that they operated though if your tumour was that large too as I've read they'll only do this if a lot smaller? Is it Thomas Armstrong and you had this done on the nhs?

They've had an MDT after my dads ct scan and liver surgeon said can't operate now (its 20cm!!)... but I'm hoping maybe biopsy will change that or they can shrink it so he could have surgery in future. Apart from losing weight he's really well... pretty amazing when I think how big this thing is!!

You have certainly defied the odds and I'm sure you will continue to do so as you sound very strong and positive. I hope you have not felt too ill during all these treatments, that's what I'm worried about too?

Thank you so much for replying,  

Yes That's him Tom Armstrong yes NHS

I live in Portsmouth but was looked after in Southampton.

I never felt ill was still at work had not had a day off for 11 years.

I cut myself it never stopped bleeding that's why sent me for blood test showed my liver had something wrong.

They told me it was too big that was Nov had 3 Biopsys and then a call to say I could have op in Jan not sure why they did decide in the end all happened so quick.

Plus I have hole on my heart so big risk as Tumour was against heart.

Next day remember him saying how big it was with 11 behind it. And left 2 in because hole in heart played up then had first Tace 6 weeks later.

I was out in 5 days after op and apart from one lot of Tace I was ok one just made me feel sick for 5 days.

After my second Op I had infection and in pain but thats the only part I felt poorly so Think I have been lucky.

Even when they found it in my Heart I never felt poorly had a cold and short of breath.

Was at work not had a day off again in 2017 so was a shock.

Year ago today was when they gave me 2 hours to live as heart was filling up with fluid.

Sent home to die then found I had 9 litres of fluid on my lungs once they drained that off I got better !

Yes big roller coaster still is so I wish your Dad well.

Where do you live ?

I have just retired on ill Health.

My Husband left work last year to look after me now we make most of every day.

Everyone will tell you all we ever do is go on Holiday.

Hopefully Tace will shrink the tumour and your dad will get the op.

I also had Gall bladder with first op and Appendix out same time second op said they were in rhe way.

Cannot remember The size they said first time on the scan when I see the Doctor next I will ask exactly the size.

When I came round was when he said it was size of a football. 

So lots for you to go through now the tests and waiting 

Wish you all the best.

Wendy

I was told at Bristol Royal that my 5 cm tumer was too big for ablation and if they did a resection cutting 60% away I wouldn't survive  So they performed a TASE operation which reduced the tumer down to 3.4cm. Now they are able to do an ablation which I should have early June. I hope you can get a Tace and get a similar result to me.

Tony

I was told at Bristol Royal that my 5 cm tumer was too big for ablation and if they did a resection cutting 60% away I wouldn't survive  So they performed a TASE operation which reduced the tumer down to 3.4cm. Now they are able to do an ablation which I should have early June. I hope your father can get a Tace and get a similar result to me.

Tony