Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Recent diagnosis

DRM
Posted by

Hi All

I thought I would introduce myself as I may need some support in the future (or possibly now!) as I'm starting to feel the effects of my recent diagnosis. 

A month ago I was told I have cancer of the oesophagus. Staging is T2N0M0.

To date I've had CT and PET scans and a laparoscopy was carried out 5 days ago. So far they have seen no evidence of it having spread elsewhere, visuals on the lap showed nothing anywhere else, just waiting on the final lap results to see if there were any suspicious cells evident. 

Appointment with oncology in 2 days. 

The plan is to operate after initial chemotherapy. 

As if this isn't worrying enough I am also immune deficient which really isn't great from either a chemo or surgical point of view. There are lots of discussions taking place about me and I think I've been on the agenda for every single MDT meeting since diagnosis!  Assuming I am having the surgery, they were unsure whether to put me straight through to operate, bypassing the usual chemo beforehand because they were worried about me and chemo but I have spoken with my immunologist and she has said that any cancer treatment takes priority and that chemo should go ahead, they will work around it. I guess I'll find out more from oncology on Thursday.

I thought I was alright with all of this and to be honest the first 2 or 3 weeks I was relatively OK but just lately I seem to be going downhill a bit mentally and am starting to feel the strain. 

I have a wonderful husband supporting me and my employers are being fantastic. I've just reduced my working hours as I am starting to struggle a little with fatigue (I think it's just mental rather than physical). 

Feeling a little lost at the moment and to say I'm utterly terrified of what lies ahead doesn't even come close! 

Thanks

Deb x

Zappaman
Posted by

Hi Deb, sorry to hear that you have joined the group. It can take time to sink in and to get your head around it, along with the emotional rollercoaster. I was diagnosed with T3 N2 M0 staging at the age of 57 and had been a smoker for 45 years. So when the consultant surgeon explained the surgical procedure to me I was not in a rush to get it done. I had 2 meetings with the oncologist and decided not to have any treatment before the surgery. That was purely my decision, my wife and son said it had to be my decision as I was the one going through it. I had the Ivor Lewis surgery on the 3rd October 2016 and have just passed 3 years clear and doing well. Try to be positive as hard as it seems, it really does help. Good luck and kind regards Frank.

DRM
Posted by

Thank you for your reply Frank and great to hear you are doing well!

Can I ask your reasons for not wanting any treatment before surgery? I'd welcome any information in this respect before I see the oncologist tomorrow. My knowledge in relation to chemo is pretty much zero. 

Thanks again

Deb

Jackie007
Posted by

Hi Deb, sorry to hear about your diagnosis and I fully understand how scary the waiting around can be , I was diagnosed in July last year after scans and tests etc I was also told no evidence of spread and my chemo started in august. I went on to have Ivor Lewis in January this year, I try and be positive and get on with life and it’s changes but just now and then I get worried about the cancer coming back , but we keep hoping and staying fit and healthy and keep fingers crossed, good luck with your treatment and hoping you will be soon clear of cancer too

Zappaman
Posted by

Hi Deb, I know many people say not to Google about it, I didn't, I looked on you tube. I listened to qualified oncologists and consultants being interviewed, mainly in the USA. To bury my head in the sand and not to research the treatment isn't something I can do. So I can only suggest that you research yourself and weigh up the pros and cons. Any decisions you make must be yours and what you feel is best for you. One consultant explained chemotherapy simply as " we give you toxins in the hope that they kill more cancer cells than your good cells, your immune system."  When I read the information sheets the oncologist gave me,I didn't like the idea of my body getting  stuff put in it that was dangerous enough that if I had a splash of pee on the floor it had to be wiped immediately and flushed away with the lid closed. Or any clothes or bed linens contaminated with my body fluids had to be kept separately and washed separately. Then the machine put through a cycle empty at the highest temperature. I thought and laughed and said and they want to flood me with it ! I asked the oncologist how much it would shrink the tumor by and he said " not that much". Either way whatever you decide there are risks involved, some people have been through pre surgical treatment and when opened up for surgery the consultant surgeon decides not to go ahead. Many people have been through the chemotherapy and radiotherapy before surgery and have done well. As I said I made the choice that I felt best for me and I figured having my immune system at it's best for the surgery would get me through it. I have no regrets and respect everyone else's choice. Good luck with whatever you decide, kind regards Frank.

Johnyboy1957
Posted by

Hi Frank I never looked at anything about the cancer ongolist said 25 days of radiotherapy and 5 chemotherapy on Wednesdays then 8 weeks later op was very lucky with chemo no side effects had op 25/7 went ok seen surgeon told me now cancer free fantastic feeling still feel very rough eating getting better but still stuff gets struck everyone is different I know but I feel very lucky

John

Keep the hope
DRM
Posted by

Thanks for replies everyone. 

Had my final results from the staging lap and it's all clear, which is brilliant news. 

I saw the oncologist yesterday and have decided to go for the chemo as this will give me the best chance of the cancer not re-occurring after surgery. I know the chemo may be tough going but I really want to give myself the best chance I can going forward.

Just need to speak with work now as oncology said that it would be better for me to be away from the office with all the winter germs and bugs as a precaution due to my immune deficiency. Although they did say that the part of the immune system the chemo affects is not the same part as where my deficiency is so the chemo may not make a real difference in respect of that. So I have to see if I can work from home. Hopefully I can. 

Also need to speak with my immunology people to see if they feel they need to increase my dosage of immunoglobulins when the chemo starts as oncology said this had been suggested.

The journey continues...……. 

Shelleyb41
Posted by

I have been told by my oncologist that I need 5 weeks of chemo and radiotherapy as it hadn't spread and then the op! Didn't realise I would have to wait so long for the op as I hoped it would be done by Christmas!!

DRM
Posted by

I'm having 8 weeks of FLOT chemo, starting at some point in the next 2 weeks.

I was originally told by my surgeon that they wanted to operate before Christmas but that's not going to work now with the chemo, so the op I expect will be sometime in the new year a few weeks after the chemo has finished. 

Deb