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Stage IV spread to liver

MydadGary
Posts: 2
Joined: Mar 2014

Morning all,

My name is Lucy last week my dad was diagnosed with Oesophagus cancer and his key worker said it was early stage one and nothing to worry about. They done another scan im sure it’s called the Pep scan and found more cancerous cells in his body and it has spread to his liver so they won’t operate and say that he may have around 12-18months to live on an average. They are going to try chemo to shrink the tumours to give him a better and hopefully longer life, at the moment i can’t accept this, there must be something we can do. 

My dad is 55 and his fit, he has a 2yr old grandson (my son) who he adores, there like best mates and it scares me that he won’t get to see him grow up. 

I am in the process of booking a private appointment at a private hospital in London to get a second a opionion as i cant accept there is nothing to be done. 

Does anyone recommend anything in the UK, America, Europe that we could try? We have savings so money isnt a problem at the moment we just want him to have the best treatment and for a miracle. 

 

Im sorry for all you out there that have this awful disease; nobody can know how anyone feels until they go through it themselves. I wish you all a miracle cure xx

 

 

dfd24
Posts: 84
Joined: Mar 2011

Hello Lucy,

make sure he was tested for HER2. if he is positive he should get herceptin  along with the chemo.

wish you all the best,

danièle

Ladylacy
Posts: 509
Joined: Apr 2012

First off I'm sorry to hear about your father.  I am assuming they did a biopsy too to confirm the cancer.  The test you are talking about is a PET scan and they are generally always correct.  But basically the only thing that can really say cancer is a biopsy.  My husband was first diagnosed with laryngeal cancer and underwent radiation, chemo and then surgery.  But a year later while undergoing a procedure, our head and neck specialist found a tumor at the cervical of his esophagus.  Surgery was ruled out due to previous radiation and surgery and the tumor was very small.  He underwent more radiation and chemo and after 3 months and a PET/CT scan was declared NED.  But less than 4 months later it was discovery by a PET/CT scan that the tumor was back at the cervical of his esophagus and there were small nodes in his right lung which proved to be cancer.  Surgery was ruled out and the only thing offered was chemo which we were told up front wouldn't cure only prolong.  My husband said enough and declined all further treatment.  Yes we got a second opinion and third opinion and all the doctors agreed.  It has been 14 months and he is doing okay but we know that he is terminal.  

Chemo can hasten and caused a lot of problems too.  I know several that couldn't take chemo at all and then again many more have no problems.  Surgery for esophageal cancer is bad.  My aunt who had never been sick in her life was diagnosed with esophageal cancer.  She underwent surgery (removal of her esophagus), radiation and chemo only to have it come back and then spread to her lungs.  After fighting the good fight she also said enough and passed.  She underwent many rounds of chemo and radiation and was never able to eat normally again.   She had a feeding tube just like my husband does and he is unable to eat normally. 

This is a hard decision but it is your father's decision and you should allow him to make his own decision.  Our sons has never tried to influence their father once he said no more and that he wanted quality over quantity.  They don't like it but they respect his wishes like i do.  

Just remember that second and third opinions are great to get but in the end it is still your father's decision.  You can spend all the money you want but in the end it is still the man upstairs who will decide the outcome, not the doctors and there are many out there who will do anything and promise anything just to get their hands on the money end of it.

Wishing you and your family the best -- Sharon

mrkenney
Posts: 12
Joined: Nov 2013

Lucy, while this form of cancer is usually very bleak it's also because most people don't catch it until it's pretty bad. I just turned 53 and was diagnosed last June. I'm same as your dad as fora as it being esophageal cancer that has metastisized to my liver.  I'm doing extremely well but I attribute that to them catching it before it really started giving me any problems. The 5 rounds of Folfox6 (type of chemo regiment) that I had was very effective in shrinking and breaking up my tumors. I was then very blessed to get on a clinical trial of a new immunobiology drug. This is the next thing in fighting cancer. There are a number of trials ongoing and these drugs basically work with the bodies immune system to fight the cancer. There are a lot of factors for getting on to one these trials but I would say they offer your Dad the best hope of an extended life and best of all, at least in my case, no side effects. Not feeling like crap for the last 6 months from both the cancer and not having chemo treatments has been fantastic.

I don't know where you're located but I would highly recommend trying to go to a university hospital that specializes in cancer research. Because this cancer is relatively rare you really need to find an oncologist that is familar with it.

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

Mrkenney,

Can you tell me what type of immunotherapy you have been or are on?  How did you get connected?  How are you being monitored?  My husband was diagnosed last May Stage 3 and had chemorad.  At pre-surgical staging they found a small spot on his liver.  He had 4 rounds of Capox with few problems and Jan/Feb endoscope/CT/PET found liver lesion resolved or nearly so and no cancer in esophagus but Barrett's with metaplasia.  He is undergoing four more rounds of milder capox.  I had called Sloan about an immunotherapy clinical trial and we were told we should meet with their "molecular" specialist and sent slides from all biopsies, etc.  We believed they were doing a molecular study to see what he would qualify for but they treated it as a second opinion and just "agreed" with current findings and the study was closed.  We were so disappointed to have spent so much time and money with no gain.  I'd like to know what the process is and which immunotherapies are most promising.  Thanks.

 

 

jaycc
Posts: 131
Joined: Jul 2012

Lucy, There is an EC organization in the UK, here is the link. I do not know much about them, http://www.opa.org.uk/ .  Here is their help line. 0121 704 9860 Keep asking questions on this site it has wonderful people. If you would like me to I will post your question on a few of the other EC sites.  For America, I did not go, but I have heard people comment positively on Sloan in New York, University of Pitt. MD Anderson. here is a link to some great people, they also have a hotline number (it is different in America there is no one centeral group like UK)http://www.fightec.org/.

On the personal side, my husband was 50, did chemo only, with mets to liver. As mentioned, getting treatment started quickly is a MUST.  This is a rare cancer, not all cancer medical people are versed in its treatment.

MydadGary
Posts: 2
Joined: Mar 2014

Thank you so much. We have a meeting with the consultant and doctor at St Thomas's and guys in London... Iv been told this is a great hospital so I will ask all my questions.

 

Im very scared as doctor told us my dad may have 12-18months to live on an average but his been undergoing tests for over a year and nothing has been found before now. How can this be? 

 

Iv iv also contacted BMI to get a second opinion with a expert consultant. Unless anyone else can reccomend anywhere in the UK or EU?

 

My dad has started juicing which we have heard can help, any other reccomendations or advice would be greatly appreciated 

 

thanks everyone you have helped me so much finding this site xx

Deathorglory
Posts: 68
Joined: Jul 2013

Hello,

 

I had a metastatic recurrance of EC.  That made me stage IV as well, although my met was to my lung, not liver.  I was told 7-8 months was what I could expect my life expectancy to be.  That was in 2011.  I dealt with folks at top of the line treatment centers and I have obviously beaten those projections.  I cannot overstress the importance of going to a cancer center that specializes in EC.  There's a huge difference between the Mayo Clinic and Your Local General Hospital.  I have no idea about UK hospitals, but it seems like you're working with folks that know what they're doing.  

Juicing has some strong supporters on this site.  I don't hold any alternative treatments in any great regard, although I practice a few myself (multivitamin, natural vitamin C, aspirin).  I think they're mostly of individual, anecdotal success.  If you think they'll help, and your docs say ok, have at anything you want though.  

Stage IV research will show you some pretty grim stuff, but there are plenty of folks out there that can testify that there's still hope via their own success stories.  Please consider yourselves to be among those.

 

Wishing you well,

 

Ed

goty2001
Posts: 71
Joined: Jul 2012

I got a similar diagnosis & identical prognosis 22 months ago. Then I was shown to be Her2+ and put on Herceptin.  Currently, tha scans are clean and I'm doing great.  Am juicing, gave up meat, and taking Vit C too - all of which helps, I believe.

Make sure you get result of Her2 test.

dfd24
Posts: 84
Joined: Mar 2011

hello,

It is wonderful to read news that people are doing well.

Claude is moving on to Herceptin only  now and not having the chemo along with it  should make him feel even better although he feels good  and there were almost no problems with chemo.

 

As you probably remember Claude's doctors forgot to test him for Her2 and were a year late in starting him on Herceptin so now I tell everybody to get tested for Her2 . I find that there are still cases where doctors don't do it automatically .

all the best to you and everybody,

danièle

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