Recently Diagnosed and looking for post esophagectomy experiences.

Hi Teksonic

Welcome to the community, it is a safe place to discuss everything you have questions about and I hope that soon, some of the gang will be along to share their experience of esophagectomy - the procedure and following.4

I am sorry that you have been given this diagnosis, it is good news though that the cancer has been caught at an early stage and that an operation is possible.  There are a few different types of tumour for OC and many different ways of treating it, so as you know more from EUS you will have a clearer understanding of how yours is best treated. 

There are some very positive stories here.. hopefully if you haven't managed to find them whilst waiting on the replies, you will have some links to them posted here for you soon.

Take Care of you

Lowe'

Hi, sorry to see you join the group. What type of oesophageal cancer have you been diagnosed with ? There are 2 types that I am aware of, squamous cell carcinoma and adenocarcinoma. If you are in the UK you are usually given some sort of staging of the cancer. I had adenocarcinoma, a tumour at the opening from the oesophagus to the stomach. After a CT scan and PET scan I was staged at T3 N2 M0. That meant it was local and in nearby lymph nodes but had not spread anywhere else. That was in July 2016 and I had surgery in October 2016. I had the Ivor Lewis  procedure with keyhole surgery in the abdomen area. I was 57 and had been a smoker for about 45 years, recovery was ok mainly, with some minor eating issues. If you are reasonably healthy and fit you should recover ok and lead a pretty normal life maybe with some minor adjustments. I don't play sports but I do collect logs for firewood which is quite heavy lifting and carrying.  Feel free to ask anything else and if I can answer, I will. Good luck and kind regards, Frank.

I had three rounds of ecx chemo followed by the Ivor Lewis oesophagectomy in February 2014. I wasn’t able to tolerate any chemo post surgery. Recovery was slow but I was able to enjoy my son’s wedding in the following June, followed immediately by a Mediterranean cruise, I was lucky in that I had retired so didn’t have to worry about the possible effect of fatigue on my work. I was able to take things easy and adjust to small meals and frequent snacks (which were not a problem at all for me, ever!).

Sure there were some changes initially and some still but 2,579 days after my surgery I am as fit and healthy as I have ever been. 
I decided that I’d like to see more of the world. I had travelled a bit while working, but wanted to enjoy far flung places as a tourist. Twelve months after surgery my wife and I were enjoying the delights of Vietnam and Cambodia’s culture and various foods (including their street foods). Our travels have only stopped now because of the pandemic, but at least we have seem most of the places we wanted to, just regretting not being able to re-visit our two favourites, India and Canada, for a while.

The pandemic also means I can’t get to the gym. I used to go to four classes each week, mainly Pilates, yoga and such-like. These kept me fit and flexible while throwing in some cardio work too. Fitness is so important with this surgery, both for the preparation for surgery and during recovery. I hadn’t been a big fitness fanatic before but felt the benefits of exercise after surgery so kept it up.

Your golf swing may be affected for a while but exercise should bring you back to normal in time. Maybe you’ll never be able to manage the American super sized meals again, but that’s probably a good thing!

The surgery is without doubt huge and the recovery and adjustment challenging, but with a positive attitude you should be able to enjoy a good social life, eating out, drinking down the pub and playing golf and making even more of life than before.

Im finding it difficult to access this forum, these days, but if you have any questions or worries then please ask away. 

Hi Teksonic,

I had chemo (FLOT) * 4 --> esophagectomy --> chemo (FLOT) * 4  in 2018. 

The treatment is major and I found the chemo (and it's side effects on me) more painful than the surgery. As they deflate one of your lungs during surgery which lasts between 5-10 hours the recovery time can be up to 2 years. 

As BrentS  says getting fit before surgery really helped me and going to the gym post treatment also helped me. 

I'm sure you will be able to play golf again, and the long term adjustments I've made are eating smaller meals and drinking fewer pints down the pub. But going out or away will be back on the agenda. 

The long term (2+ years) side effects I suffer from are my taste buds have changed a bit (some foods I didn't like I now do and visa versa) and occasional dumping syndrome (early and late). I don't know what triggers my dumping syndrome? But for me it is getting less and less frequent and I steer clear of meals with lots of fat in or lots of sugar in. 

Hiya Zappaman 

I have has same diagnosis adenocarcinoma staging same as you quoted T3 N2 M0 . Indeed some spread to lymph nodes which will apparently be removed 

The consultant has said that the surgery is “one of the biggest they do” definitely not keyhole, instead a couple of large incisions so I was interested in your experience and consultant interaction, anything you can share please

Many thanks

Hi vespaman, I had my surgery in the Royal Infirmary Edinburgh and my consultant Mr Couper was excellent. I also had about 10 lymph nodes removed during the surgery, which lasted about 10 hours. I had a large incision about 12 inches long on my right side, more to the back. I was lucky enough that he did keyhole surgery around the abdomen area and had a jejunostomy feeding tube inserted into the intestine at the same time. Try to get as fit as possible before the surgery and practice deep breathing exercises to strengthen and expand your lungs. I wasn't super fit but had lost a lot of weight because I couldn't eat, I weighed 59 kg. I was 57 years of age and had been a smoker for about 45 years, I haven't smoked since the surgery in October 2016. Getting yourself into a positive frame of mind really does help you get through this. Before you are going in for the surgery, or anytime in fact please feel free to ask anything else. I don't want to put too much information in one post. You will get through this and for me I have enjoyed the last few years, we all recover at different rates and I was lucky enough that I didn't have the financial pressures of having to start working again asap. I actually ended not working again due to unpredictable food dumping issues. Nothing serious but you can wait until after surgery before you need to ask about that. Good luck and kind regards Frank.

Hi Teksonic, good to see you have the same priorities as myself - sport and the pub !! I was diagnosed in January 2016 (T2 N1 Mx) and underwent chemo (cex) then oesophagectomy in July 2016 (9 hour op, keyhole at Aintree Hospital in Liverpool) then post-op cex chemo. I'll be 55 later this year and still enjoy 5-a-side football (covid permitting) followed by a few pints at the pub! In terms of eating out I'm on smaller portions and I avoid sweets (so cheeseboard for me) as I find that too much sugary stuff can bring on a dumping bout - though these incidents are less frequent these days. NO restrictions at all on daily activity and feel fitter and healthier than ever before in my adult life.

I wish you all success with your forthcoming treatment, try to keep a positive mindset (difficult at times) and think of the good times to come...especially at that 19th hole!!

Surgery a year ago Dec past can’t say it has been an easy year but very well recovered now, back to work and being as active as I can only limited by lockdowns. Diet is good once I got used to eating less weight stable 

Thanks Frank really  appreciate  your insight, had keyhole before when gall bladder removed that was fine. The other incision I guess I can’t escape. I have heard  of broken ribs during the procedure, hope I don’t experience that, cracked ribs before and took ages to heal. Thanks again Jez 

Jez, the incision on your right side is to give the surgeon access to remove 2 ribs. Then with your right lung deflated they can get in about the area that needs to be removed. They kept me out of pain in hospital and I was on dihidrocodeine for about a month after getting out of hospital and I had no problems.