Oesophagus Cancer spread

Hiya I Have no advice  just popping in to say I’m sorry. Can you request a second opinion hopefully someone more experienced will be along soon 

take care 

Aaron buddy, really sorry to hear your news that your cancer is spread. From my own experience oncolgists can be brutal and tend to give the worst prognosis to prepare you for the worst. I'm 35 so a similar age to you and was brought into a room and told that I was incurable and that I would have chemotherapy for as long as I can survive. When I asked about different treatments they told me that it would be a matter of months difference. The statistics and figures don't take into consideration that a lot of the new immunotherapy are new and the chemotherapy drugs are more advanced yet. On top of that when I asked what the statistics were for our age my registra told me they don't really exist as not many people our age get this type of cancer. I have been lucky since being told I was incurable the combination of herceptin and chemotherapy has worked wonders for me and the game has changed, still not out the woods and a hard battle ahead, but things have changed and there is no reason that can't happen for you buddy. I've also had others reach out to me with similar prognosis from the docters and have managed to defy what the docters have said.

My advice is believe in the medicine/docters, focus on getting the right nutrition and be positive mate I know it's hard, but focus on believing you will get better. It has been my approach throughout and it has paid dividends for me. I'd also recommend signing up to a charity called the cancer club it's a free charity for men to get us talking and help eachother through this. It's really helped me buddy a top group of lads

Well Aaron

You are young… you are unlucky but you are not a no-hoper. Please don’t think that. 

Oncology teams do work wonders these days. So FLOT chemotherapy didn’t work for you but there are other routes to get you back on to the curative pathway. You have to trust that your clinical team are doing everything possible for you. If you can’t trust them then maybe a second opinion may be an idea. You need to be able to trust them so that you remain positive. Give up and the game’s up. There are people on this forum who have things turned around. There is someone I know with oesophageal cancer that I see at a social event once or twice a year; he was in your position seven or eight years ago, he was diagnosed just after me. He is astounding himself at how well he is doing; still enjoying life, always smiling, always positive.

Hi Aaron, I’m sorry to read your initial diagnosis has changed, when you see your oncologist see if you are suitable for immunotherapy as having this alongside chemo will give you a much better treatment than just chemo alone. I’m so sorry you are going through this . My thoughts are with you and your family 

Hello!

• I just came across your post and wanted to say how sorry I am to hear the position you're in at the moment with your treatment. My husband was diagnosed last August initially as T3N1M0. At MDT they decided that although there was nodal involvement he could still be put on the curative pathway. We met the surgeon who assured us he could remove the affected lymph nodes as well as the oesophagus. We met the oncologist who agreed a FLOT regime before and possibly after surgery. Great - we were happy with the fact that there could be a 'cure'.

A week later and the oncologist told us that the MDT had reviewed the last PET scan and found mets in my husband's liver. Immediately this meant no surgery, a change in chemo and a palliative care pathway. Absolutely devastating. In a week we had gone from hope for the future to almost no hope at all.

The first 6 rounds of chemo went well and the scan was positive news with tumour shrinkage. Like you, my husband found swallowing almost back to normal after just 1 chemo session. 2 more chemo sessions to go then another scan. After that ???

We are trying to stay positive - my husband is 46 so again like you I don't think the statistics really reflect his age. Hopefully he will prove the oncologist wrong and disprove the timeframes we were given. We have to believe that we can beat this otherwise we wouldn't get through this.

I really struggle with having surgery as an option for treatment only for it to be taken away for good if there are any signs of mets. Even if my husband has an amazing response to the chemo the oncologist thinks the MDT would not consider surgery, irrespective of whether the mets have disappeared from scans and the tumour has shrunk.

Stay strong and think positive. People defy the odds and amaze the doctors all the time with their recoveries. You and my husband will be those people

Hello!

• I just came across your post and wanted to say how sorry I am to hear the position you're in at the moment with your treatment. My husband was diagnosed last August initially as T3N1M0. At MDT they decided that although there was nodal involvement he could still be put on the curative pathway. We met the surgeon who assured us he could remove the affected lymph nodes as well as the oesophagus. We met the oncologist who agreed a FLOT regime before and possibly after surgery. Great - we were happy with the fact that there could be a 'cure'.

A week later and the oncologist told us that the MDT had reviewed the last PET scan and found mets in my husband's liver. Immediately this meant no surgery, a change in chemo and a palliative care pathway. Absolutely devastating. In a week we had gone from hope for the future to almost no hope at all.

The first 6 rounds of chemo went well and the scan was positive news with tumour shrinkage. Like you, my husband found swallowing almost back to normal after just 1 chemo session. 2 more chemo sessions to go then another scan. After that ???

We are trying to stay positive - my husband is 46 so again like you I don't think the statistics really reflect his age. Hopefully he will prove the oncologist wrong and disprove the timeframes we were given. We have to believe that we can beat this otherwise we wouldn't get through this.

I really struggle with having surgery as an option for treatment only for it to be taken away for good if there are any signs of mets. Even if my husband has an amazing response to the chemo the oncologist thinks the MDT would not consider surgery, irrespective of whether the mets have disappeared from scans and the tumour has shrunk.

Stay strong and think positive. People defy the odds and amaze the doctors all the time with their recoveries. You and my husband will be those people

Sorry to hear this.

What is clear is that people can have a headline diagnosis of oesophogeal cancer but have very different actual conditions, and prognoses, and that things can change either way as time goes on.

Doctors cannot get it right. They say that we want to try this, and double check first and find it no longer possible. Equally when asked 'how long?' They have to tend to the side of pessimism (on a very uncertain question). 

As to the second opinion, my advice is to find someone you can feel you can trust, and to trust them. Trust necessarily involves going beyond what you can objectively justify, but it is necessary.

Hi Aaron. Where are you based ? Use Dr Asif Chaudry @ the Royal Marsden and his team for your second opinion, absolutely amazing and cannot recommend him enough. It will help

Hi Aaron, was radiotherapy mentioned at all? My son,31, was diagnosed T2N1 in Nov 21. He’s 7 weeks post surgery. Originally it was to be chemo only but the Oncologist changed it to daily radiotherapy plus weekly chemo for 4.5 weeks. It worked and when he had the surgery the nodes were clear. This information might be totally useless but I thought I’d mention it. He’s under the care of the Imperial Group hospitals in London. Good luck. 

Old post , we are having a 2nd opinion with this Dr next week