Just st diagnosed

[Wongiranger]

Diagnosed 2 weeks ago after GP ordered investigations around anaemia. Had CT scan and endoscopy. Told tumour hasn’t spread, and medics anre aiming for a “cure”. About to have PET scan and another assessment endoscopy before being recommended treatment. Cancer isn’t new to me…prostate cancer in remission after radiotherapy. I’d welcome any advice.

[Beatrice90]

Hi, I had the Ivor Lewis procedure in 2013. I had Barretts Oesophagus with a tumor overlaid of 5cm. Chemo before and after. Operation removed 12 inches of my Oesophagus and a quarter of my stomach. I was lucky it was picked up early as I had no symptoms right up until the Operation! I was having endoscopies every 3 years, but anaemia was picked up on a routine blood test. Sent for endoscopy within a week and had CT scan. Then referred to the Royal Marsden in Sutton for assessment and treatment. Operation was at Chelsea Marsden. So lucky living in London and having these brilliant hospitals close by. That was 11years ago, still here to tell the tale! Currently sunning myself on the beach in Goa! Good luck my lovely. Angi xx

[Cavalier3]

Hi! Well you’ve come to the right place. Lots of lovely people here that will help you through this journey. My story is very similar to yours. I’d had a bad pain in my back for a couple of years where the tumour was but no heartburn, pain or trouble swallowing. I too had no spread. Diagnosed in November 2020 aged 51. Chemotherapy, Radiotherapy and Ivor Lewis in March 2021. The key thing to getting through the treatment and Ivor Lewis surgery is your fitness levels, keep walking and eating well. I would take each stage of the journey as it comes. We will all be here to help you through.

[Deeedals]

it’s a shock I know, even though you’ve been through a cancer diagnosis before. But you’ve been diagnosed early without any spread so that’s brilliant news.

I was diagnosed in January 21 and had chemo then Ivor Lewis in June 21 then more chemo which is I believe the standard treatment.

It seems like a whirlwind of treatment and hospital visits and it is a major op but if as Cavalier says you work on building your fitness and general wellness you’ll get through it so much easier.

Wishing you and your family all the best of wishes. And we’re all here got you

Xxxxxx

[LauraWxford]

My advice is to be aggressive in treating this. Survival rates are low, and you will see that most survivors did the radiation, chemo, and Ivor Lewis operation. After my chemo and radiation scans were not able to detect cancer anymore. I went to MD Anderson's thoracic clinic afterward for consultation and.my husband wasn't keen on Ivor Lewis surgery because of the "clean" scans. My surgeon was blunt about my chances of survival with and without the surgery, which were low. And, if the cancer returned I would no longer have radiation in my arsenal of treatments since I had all the radiation that could be done to that area of my body. I opted for surgery, after which, the pathologist found a few live cancer cells in the tumor bed. So again, be aggressive. Pull all the stops and use every tool available to you to get rid of this. May our Heavenly Father hold you in the hollow of His hand on your journey

[BiliousBob in reply to LauraWxford]

It's not helpful to just say that survival rates are low. There are a lot of factors involved in prognosis. The statistics are skewed because most people who are diagnosed are elderly, late stage diagnosed too because symptoms are hard to identify.

[LauraWxford in reply to BiliousBob]

I appreciate everyone keeping upbeat attitudes and my intentions were not to dampen anyone's spirits. My surgeon's brutal honesty saved my life because it helped me make the decision to have the surgery, which was 6 years ago. I will always give advice to have the surgery to increase survival statistics. Having been a nurse I don't believe sugar-coating medical dilemmas helps people make sound decisions, but everyone is entitled to his own opinion. I don't think this is the appropriate place to put people down or bicker and nit-pick the experiences and helpful intentions of others.

[BiliousBob in reply to LauraWxford]

As others have said it ISN'T at all helpful to make sweeping comments about survival rates in a negative manner. If someone had just read your post and taken it as gospel that wouldn't have been at all "helpful". I stand by my criticism and hope you might consider deleting it.

Thank You

[Summerson in reply to LauraWxford]

I agree it’s not helpful to say survival rates are low you only need to read on here of all the people that have survived a good number of years after surgery. It’s a very hard journey but definitely worth it . I,m nearly six years down the line and yes a new normal but you can get there like so many of us on here have done . Good luck xx

[Mardri]

Very best wishes to you.

[Popsic]

I was diagnosed in 2012 with a tumour at the oesophageal and stomach junction. No spread was detected. I was told if I had my oesophagus and half my stomach removed that would " cure " the cancer, so, i did. I had no chemo or radiation therapy before or after the operation. It hasn't been an easy 11 years for me, but we are all different. I have now been diagnosed with Colitis which apparently can happen after surgery. so it goes on. But, I'm still here ! Good luck and see you on the other side 😊 x

[grandylynda]

Well, you have found the right forum to share concerns and advice. I was diagnosed in March 2017 after continually feeling like there was a lump in my throat. Never thought it was an actual lump because it seemed to move. Interestingly what I felt was nowhere near the tumour that was found. It seems to me that treatment to cure can vary so try to just take one step at a time. I had Chemoradiotherapy followed by Ivor Lewis surgery. As I remember,after the PET scan they will have you to an appointment to tell you the plan. Hope it all goes well

[Myfrenchieboy]

Hi, I had my operation on 31st July this year. A couple of complications meant I spent 10 days in Critical Care followed by 5 on the ward. I had 3 doses of FLOT prior to operation and 3 doses after. None of it was pleasant and there were times especially after the operation I felt so depressed and I even contemplated not having the FLOT afterwards. The help and advice I received from this group was amazing and reading people’s different experiences spurred me on. I am now putting a little weight back on, can eat pretty much anything in small portions and looking forward to my future. I’m 71 years old and also had Prostate Cancer in 2018. I wish you all the very best in your journey the same as all the good people on here. Don’t give up

[Makulit]

Stay positive! Mine was big and had spread into 4 lymph nodes. I had chemo, radio and the full Ivor Lewis. That was over 10 years ago now, and I'm enjoying my life more than ever. If you're stressed, I recommend going to Maggie's. I did a mindful meditation course, creative writing and some tai chi there, all in a great atmosphere with people in a similar predicament.

The power of positivity is underestimated. Good luck with it all.

[Kentishred]

Hi I was diagnosed in August 2019 I had chemo and radiotherapy and Ivor Lewis February 2020 aged 72 no post op treatment needed. I'm comming up to the fith anniversary of my operation and the only thing that slows me down is my arthritis. All the way through my oncologist and surgeon talked about cure. The treatment was tough but you just keep going. I knew that I would get better and I did.

Good luck and stay strong.

Red.

[SpanielMads]

My situation was diagnosed this year with stage 2 and no spread. I had the option of surgery or chemoradiotherapy. I chose the latter. Chemoradiotherapy finished in August. Had first endoscopy and am awaiting biopsy results. Initial photos are that my oncologist is very pleased. All photos look healthy however I’ll feel happier when biopsy results are through. I do feel well. My eating is better and I can eat things that’s I’ve not eaten is a very long time

I realise everyone’s case is different and I’ve read so many times of being urged to have the operation as well that I’m now extremely worried. My oncologist hasn’t recommended me to have it though so surely this would be the case.

Overall I wanted to share my story to hopefully help with your current situation. I will update once I have my biopsy results back.

[walking-in-wales]

Lots of useful information on the Cancer UK & Macmillan websites. I got my diagnosis in July 2018 (stage 2+ adenocarcinoma near junction with stomach) & oesophogastrectomy in December following a course of chemo. Lots of things to be aware of, as mentioned by others. Do as much as you can to maintain your fitness & wellbeing before, during & after treatment. Having a support network at home is also important - I hope you have one.

Many factors come into play such as location, type & stage of your cancer. I had keyhole surgery & my recovery from that was good. The worst part for me was how I reacted to the post-op chemo. I think I experienced most of the listed possible side-effects to varying degrees. Helpful to be aware of what may happen, but responses are so variable depending on your general health & genetics. I always think of preparing for the worst, whilst hoping for the best.

There ar longer term possible effects to be prepared for & how to manage, particualry around diet - frequency, volume & types of food you may tolerate best. I developed a lactose intolerance for several months after & bouts of dumping sydrome & fatigue still affect me from time to time. However these are manageable & having been signed off from oncology earlier this year all is good. My consultant reminded me that I had to get used to a new me. This is true & took me time to adjust to & I still get a bit frustrated by not being as fit as I was. Having said that I am also 5+ years older so should not expect to be!

All is not doom & gloom, stay positive. Many of us survive to tell the tale & have a good life .

Best wishes & good luck with your treament.