Secondary liver cancer

Hi Alan

I can't help with your question, as I had a different type of cancer, but I noticed that no one had stepped forward yet to tell you about their experiences.

It might be an idea to also post this is the oesophagus cancer group, which I see you have joined, as there will probably be people there who have experience with secondary liver cancer. Clicking on the link I've created will take you directly there.

x

Thank you latchbrook, I am waiting now for the consultant to phone me Monday night or Tuesday morning, they are meeting tomorrow following my pet-ct scan yesterday so I hope to find out more shortly.

Regards Alan

Hey Alan

I was diagnosed with stomach,liver and esophageal cancer in mid November. So far I have been lucky not to have severe reactions to my cancer, nor to my first round of chemotherapy. I can tell you that my liver seems to be expanding(getting bigger)...you may experience this in the future.

Hi, 

Thanks for your reply, I am not sure how chemo or radiotherapy works !! When you have it are they concentrating on your oesophageal cancer, liver or stomach ? This may seem a funny question.

Alan

Hi Alan

I was diagnosed with Oesphageal Cancer in September 2019 - the secondaries in my liver were discovered before the primary, which was subsequently found at the gastroesophageal junction, around 10 days later. (Since liver mets most commonly occur where the primary is in the digestive system, they did a colonoscopy and gastroscopy to try and find the primary as it was most likely in the bowel or upper GI tract somewhere). 

In my case I have been told the main aim of the treatment is to deal with whats going on in my liver, although it should also be having a similar effect on the primary oesophegeal tumour so it should actually be dealing with both. However the main aim of the treatment is to try and manage what is going on in the liver as I think this is the most concerning medically-wise.

It's chemo only for me - no radiation, and no plan to have surgery.  I did ask "why wont you operate to remove the primary tumour" and was told that that approach had been tried for 50 years and it didnt work i.e. didnt affect the outcome.  I think it is because the surgery is a very big op, hence having the surgery would reduce the ability to cope with the chemo that would be required after it. Thats just my interpretation though.   

I have read stories on here and in other forums where people have had the same diagnosis (oesphageal with secondaries to the liver) and treatment (Chemo), and the treatment has worked so well on the liver, that it has brought surgery back onto the menu.  

The original plan for me was to do 6-8 cycles in total and then take stock of how its all going. I do get very tired especially at the beginning of the cycle. I had a CT scan on the 18th Dec after 4 rounds, and will get the results of that next week, so should know then how things are going. My regime is a three week cycle of Oxaliplatin and Capecitabine. I have been very fortunate so far in that the side effects have been very manageable. I apparently am quite sensitive to the Oxaliplatin so have needed to have piriton included in the treatment, and also get the peripheal neuropathic symtoms that seem to be common with Oxaliplatin, but aside from that I am doing ok.  I've maintained my weight and even put on a little.  The three main symptoms I had have actually gone (a constant cough, night sweats, and fevers that put me into hospital three times) so in that sense I am responding well to the treatment. The medical staff have been magnificent, they want to know about all symptoms experienced, and try to give you things that help for each one. 

I had some good news at my last session as I was told my primary tumour is HER2 positive, so we can try Herceptin. It doesnt always work, but it's an extra option in the 'toolbox' and sometimes when it does work it can help dramatically. So basically it will be a case of taking it until it stops working, however long that is - sometimes a few months I believe, occasionally a couple of years or more.

At the moment I feel generally well and am not experiencing any pain. I occasionally feel pressure in the abdomen around where the liver is, but no pain as such. My GP suggested it might be helpful to refer me to my local hospice so that I could meet them now while I am well - this was a bit of a shocker to me to be honest, and although I said Yes I found it quite difficult to cope with the afterthoughts of it all. But on balance I am happy that the referral has done and there has been a story in the news very recently (in the last week or so!) that says patients with an 'incurable' diagnosis who plan for end of life scenarios seem to last longer than patients who dont!

Anyway I hope the above helps. I hope you are getting the answers and information you need from your nurse specialist and consultants and wish you all the best for your treatment! There is lots of support on here, I have found it so helpful.

I can not thank you enough for the indepth report you have taken the time to write, I have read your post several times, thank you so much.

My doctor as also suggested I approach my local hospice and yes this was a shock to me but the more I think about it, it may help me as I live alone with no family it would possibly give me some one to discuss my fears with and answer some questions.

Can I ask what part of the country you are in, I am in Lincolnshire, I have been told that Lincolnshire is fairly backward with cancer treatment but as a newbie to cancer I am not sure - not that I could do much about it, I live where I live.

I am sending a friend request, I hope you accept.

Thank you again kind regards

Alan

Hi Alan

I'm so pleased it was helpful. This is an amazing forum, it has really helped me.

I must admit when my GP suggested the hospice referral, it threw up lots of questions along the lines of  "what arent they telling me", "should I expect to be going downhill fast/suddenly" and that sort of thing, even though he had said it was just to get me on their radar earlier rather than later. I met with the nurse from the hospice and it really has been very helpful - I now have a contact number that I can call if things do deteriorate and I need to speak to someone about a strange new pain or symptom, and just knowing that I have that number helps. Also, the welfare officer at the hospice has helped me do a PIP application (I said I didnt think I was entitled because I am still in employment - but she assured me I was, and sure enough the PIP has been approved). So that has been a huge practical help too. I'm planning to attend one of their drop-in coffee/talk/chat sessions early in the New Year.  

I still was a bit freaked about the referral on my next visit to my GP. When I voiced these concerns ("Do you know something I don't about my prognosis!")  he said that he was totally inline with my oncology doctor. The reason for the referral was that they had reviewed how they were dealing with people with this sort of diagnosis and discovered that they really could help people more by getting them an earlier referral - for example on the practical level of helping with PIP applications. So I did feel reassured then.    

I've accepted your friend request and happy to help with any questions. I live in Surrey. Although my local hospital does have a cancer centre, for the treatment I am having I have to travel to a larger hospital about 30 miles away as that is where my consultant is based. Thankfully it is only one visit every three weeks as its a bit of a tricky journey, and involves the M25!! :) 

Very best wishes

Nigel 

Hi Nigel, 

I now have the confidence to phone the hospice knowing it does not mean I am near death, I would appreciate some help with finances, pip. I feel sure they will most definitely help me mentally and physically, just to have someone to talk with who can answer my worries will help me cope.

Thanking you for your willingness to answer any questions.

Kind regards Alan

Hi ,

Just wanted to pick up on your points about the liver spread . My mum had one from a primary Bowel tumour but I think the treatment is similar in that the chemo is platinum based . They use a systemic approach so the chemo gets to travel throughout the body and hopefully tackled the rouge cells but obviously the healthy cells take a hit as well . The liver is such a big organ it can compensate for quite a lot of involvement before it seems to reach a tipping point and it can begin to  stop being able to do some of its functions properly. You may notice a little yellowing if the eyes etc .

To put all that in context my mum had five liver mets . One alone was 5 cm and her liver function was bang on normal . It was not impacting her at all . She was picked up through a screen .

Her chemo worked very well on the liver mets .

I am so glad you are both looking into the hospice care . It has changed so much . I was looking to run a “ let’s stay active “ group for day patients which was all about activities that kept your general health and well-being as a priority. It has moved away from just being an end of life care facility in most cases and has wonderful resources that can really help . Their Doctors are easy to access and really skilled with the medications etc . 

I wish you both every success ,

Court 

Thank you Court,

Your information / guidance is most welcome and appreciated, I am just learning about the different types of chemotherapy, trying to take it all in before I start mine in the very near future, knowledge I find gives me the confidence to take it on, I do feel ready.

I have contacted my nearest hospice by email, it is about 14 miles away and registered to receive information on their upcoming events, hopefully I can get involved which would be great for meeting others and a big help to me mentally to have someone to discuss issues with as I continue with my cancer journey.

I hope your mum is coping well following her past or present treatments.

My best wishes to you both.

Alan