Stage 3 Oesophageal Cancer, spread to lymph nodes & brain

[mcdonnp1]

Hi Folks,

My Dad was diagnosed with late stage 3 oesophageal cancer with 2 impacts lymph nodes. Until today the plan was to undergo a 6 week session of radio & chemo, followed hopefully by surgery. Today, the results of an MRI showed something on the brain which shows the cancer has spread and that has become the priority - at this point they're looking at focusing on reducing the side of that rather than a cure for the oesophagus.

This has all happened extremely quickly (about 2 months since he first felt ill) so I'm quite new to this whole thing. He's 58 and otherwise in good health. While I understand the severity of this and the logic behind shifting focus to the brain and playing it from there I wanted to reach out for two things;

1. Advice on specialists in this field - Our medical team in Ireland is great but I'm curious if there's an exceptional doctor we should consider abroad.

2. Experience and advice on best practice - Has anyone gone through a similar diagnosis.

Again, I appreciate that this is a major blow to his initial diagnosis, and we'll learn more about his timeline in the coming days. I literally just got the news so wanted to get the ball rolling on research and addressing this in the best way.

Thanks in advance for any help

[brucemillar]

Hi

It can be rather subjective trying to name specialists. I guess we tend to go with who we know.

There are also several disciplines involved from Oncology through to Surgery.

My Surgeon is a Mr James Gossage and he would be a good starting point - Give him a Google. He is based in London Bridge & St Thomas hospitals.

He saved my life which makes me massively biased. But he is a recognised specialist in this field and is open, honest and trustworthy.

I wish you both well. Good luck.

[HONORIUS in reply to brucemillar]

As Bruce says, the most heartfelt recommendation will inevitably be for a consultant whose practice has saved one's life: I am deeply indebted to the skill of Simon Dwerryhouse at Gloucester Royal, a recognised centre of excellence for the treatment of oesophageal cancer. His diligence and humanity, lack of condescension and irreproachable pastoral care - not only to me as his patient but to my wife and daughter as equally enmeshed in the process - is nothing short of humbling. A great surgeon and a lovely man.

[brucemillar in reply to HONORIUS]

I liked that reply so much, I wanted to like it twice.

I feel honored to have met and spent time with these people being in their care. They ask for nothing but happily give everything to us, people that they had never met.

[HONORIUS in reply to brucemillar]

I couldn't agree more. I knew Simon was the the right stuff from the day we met. I was worried that my consultant would be a gob in a bow-tie. Instead, I met a generous and patient man who from the outset I recognised as an ally. As I was leaving his office on that first meeting, he took my hand and said, "we shall take very good care of you, you know." He then took my wife's hands and said: "...and we shall take very good care of you." After eight and a half hours of surgery, it was he who called my wife and daughter to let them know that the procedure had gone well; and his post-operative care has been of the same kidney. In awe.

[brucemillar in reply to HONORIUS]

Without starting a contest ;^). This mirrors my experience with James Gossage. Oddly (at the time) I was warned "he looks very young". He does indeed. But within seconds of meeting, I knew I was with the right person and I never once felt the need to question that position again.

He has been our rock, our go to place and comfort. Every question answered with a detail that we can understand and a politeness that is inspiring. When I met his team, I met the same ethics, same approach and same warm feeling. You cannot bottle this (shame).

Anyway. My point is that there are so many brilliant people out there who will happily give their time and expertise to you and your father. I also found that they were happy to give praise on their colleagues with James at one point offering me a "second opinion" something that I never took up and never regretted.

[mcdonnp1 in reply to brucemillar]

Thank you both so much for your replies. I’m in the process of getting my Dad’s records so I can try get second opinions. As mentioned, our current team are great, I just want to get as many opinions as possible due to the complexity added to his situation with the spot on the brain.

[gutlesswonder]

Such inspiring testimonials.

How much easier my path would have been if only I could say the same.

But I've still enjoyed an extra 26 years.

mcdonnp1... I wonder if you should be looking for a centre where Proton Beam Therapy is available.

[mcdonnp1 in reply to gutlesswonder]

Thank you, I’m meeting the team today and will raise this

[Mindcrazedbanjo]

I'm sure Proton beam would be the best option for the brain tumour, although the uk gov has recently bought 2 or 3 of these machines I don't know if they are up and running yet. I met a chap who had been travelling to Prague to get this very treatment, he had bowel cancer and it was working for him.

Because I couldn't complete my post-Op chemo, I went to a Hyper-Baric Oxygen presure chamber for 6 months, there were people there with various types of cancer being treated. Its another option and something to try. best of luck I hope he pulls thru.

[mcdonnp1 in reply to Mindcrazedbanjo]

Thank you, will definitely explore this