Spread to lymphs, lung and liver

Hi SunLove. Welcome to the forum. I think you will find it really helpful and supportive. I was diagnosed with advanced oesophageal cancer in February and I remember well the shock and devastation of the first few weeks before any plan for treatment was put in place. I found that once I had met the medical team looking after me I did feel better. There have been lots of ups and downs since then and I won’t pretend to you that it has been easy. What I have learned is that things change as you go along this journey and you must never give up hope. I have a stent fitted and since I have been able to eat better I have got stronger. I am now walking 3-4 miles every day and I am determined to enjoy every day.. I know that you must feel overwhelmed at the moment but things get clearer and more manageable. Stay positive, make sure that your man is getting his nutrition and try to do something active each day. I wish you the best of luck going forward and if you do have questions or just want to share how you feel then post on the site. I know that it helps me. Sending love from the UK! 

Hello SunLove, Brent here.

so sorry to hear that your man has been hit with this awful diagnosis. I remember just how devastating it was in the early days, both the news and the waiting. But as Nan says, things become more manageable as time goes on. Everyone and every diagnosis is different, so it’s difficult to generalise and we can only tell of our own experiences. Trust in your medical team; they will be able to answer all your questions.

My diagnosis was nearly nine years ago. My staging was T2M0N0 so I was lucky to be able to have chemo and surgery. Chemotherapy has moved on since then and radiotherapy is often used in combination, and there is immunotherapy now too. I meet a man a couple of times a year who was diagnosed shortly after me who had a similar diagnosis to your man. It has been a rollercoaster for him and his wife but he still comes to these social events and is as cheerful as can be. I think that must be the key, a sense of humour and a positive attitude. I’m sure they affect the outcome, and in any case make life more bearable.

Wishing the best for you both.

Hello SunLove

• My partner was diagnosed with adenocarcinoma  end of May. It really stopped me in my tracks, the shock. All the uncertainty and waiting for tests and results is so stressful. I spent ages on google reading the worst and in the end I found this place. Its been so nice having others there to ask questions and there are some really nice people on here who help. When you get a treatment plan, you will start to feel a bit more at rest, I do now. My partner starts chemo next Wednesday. We don't know what the outcome will be but he is really hoping he can eat again. We are going to not let the cancer define us and we are just going to enjoy what time we have together. I think I felt better when I stopped anticipating the worst, I had to change my mindset,because its not come yet. And if I keep thinking that way it will stop me enjoying things. He could be run over by a bus or some other horrible thing could kill him. It has taken me 2 months to get to this place though. Take care and post on here as it helps. 

Hello SunLove

Thank you for reaching out here, you are not alone. 

My beautiful man is also a 50 something guy, who gave up smoking some years ago but has for a very long time suffered from reflux. 

My Husband Dal, was diagnosed with Stage 4 Oesophageal Cancer with secondaries in his lung, liver and lymph nodes, at the beginning of May 2020, T3N3M1 GOJ and two years later we are still on the journey of life. Main treatment started as chemo and then he went on the targeted therapy due to being HER-2 positive (something hopefully they will test your Love for) and he has reacted extremely well.  

My goodness I remember when we were told, and how I reacted, but like Lady74 has touched on , it is a matter of finding the right mindset for you.  

Treatment in the US may be a little different to in the UK, so I can't offer much thought on what you may expect but what I do know is the MDT assigned to your Man will do everything in their power to do what is best for him. 

Stay strong . 

Lowe'

Thank you all so much! Nan, Brent, Lady74 and Lowedal, your stories mean so much to me! Today we met with an oncologist, a highly compassionate young doctor in his 30s. He confirmed that the cancer is stage 4 (which we already knew, still hard to hear, though). Now he wants to have a port inserted into my love's chest for chemo and hopefully immunotherapy depending on results of HER2 and PDL1 testing. 

Does anyone have experience with chemo ports? Pros/cons? The doctor also brought up a number of possible chemo combinations including Oxaliplatin and Fluororacil. The suggested treatment plan appears aggressive with a continuous chemo drip every 21 days for a couple of days. Has anyone gone through that? I am fumbling for a candle in the dark here. Thank you again. 

Hi Sunlove 

A port is a good idea in my mind. I had one put in back in March when I started on this journey.  I’m just finishing my fifth cycle and have one more to go. With all r’the infusions and blood tests it saves so much discomfort and is pretty much hidden . Sometimes I’m aware of its being there but most times I’m not. I have the chemo  and immunotherapy infused every 21 days . I usually go in about 10am and leave about 3 pm. Then there are 2 weeks of tablets and one week free! My oesaphgul cancer had spread to the nearby lymph nodes and liver. The treatment did help with the eating and the scan showed it was working. The oxapalitin causes some interesting side effects like sensitivity to cold and tingling fingers but nothing too difficult to manage. Good luck with your treatment. It sounds like you have a good oncologist.

Hi SunLove, I am so, so sorry you are here. I was in the same position as you back in early Dec 2021 and it is an emotional roller-coaster ride, without any of the fun and no brakes. Talking to others who understand really helps. I echo what others have said. I have written a blog of our journey so far "Our Battle with Oesophageal Cancer" which might give you some answers, although everyone is different and no two people have the same experience. It's just a small comfort to know that you are not alone.

Keep posting and sharing, both ups and downs.

All the best

M

Hi  Again

Dal has a Bard Power Port, (port-a-cath)  and it is so much better for him, after months of having a long tube inserting into the vena cava vein in his arm and not being able to get it wet, covering his arm in the shower and experiencing his skin drying out and flaking, he was given the device in his chest. Many of the hospital staff in the UK are still not too familiar with it, and he still has bloods taken most of the time via the traditional needle method, but for the targeted immuno treatment he they connect it up to his port.  His cycle is fortnightly, administered over a two day period, he comes home with a bottle attached to the port overnight and has it removed the next day,  he has been taken off the Oxaliplatin and is now on a Folfox/Herceptin mix as he is HER2 positive.  

The Port enables Dal to go swimming, and to not worry to much about catching a pic line or infection; it is worth remembering that the more times the port is open the more someone may be prone to infection, so having bloods taken normally is not a problem. It also ensures that if someone becomes extremely ill, they Medics can go straight to the port and not have to worry about finding a vein. 

Overall his treatment has been good to him .... you can follow our blog by clicking our picture and following the link, start at the bottom of the pages to go from the beginning, if that helps you to have some understanding of how things have been for him.

I wish you Man every success. 

Lowe'

So glad to know that Dal is thriving and doing things he enjoys like swimming! Very comforting. Here's to both our men and everyone else on this difficult path living their best life possible!