Oesophageal Patients Association
3,440 members2,120 posts

Positive Posts needed!

My husband has been diagnosed with stage 3 OC. I am worried sick about him and would love to read some positive posts about fighting and surviving this cancer. He hasn't started any treatment yet and is going for a PET scan on Wednesday.

48 Replies
oldestnewest

Hi, i am over 5 years post op and understand your worry as my wife was also worried sick at your stage. Life is good again now, but I won’t dress it up. It’s a long hard road to get to where I am now. It’s easier said than done but try to stay positive in the early stages. There are low times when you think life will never be the same again and in some ways it is never the same again. But you learn to live with the changes in eating habits etc. Like I said, life is good again, if a little different. Good luck on your journey, stay strong through the hard times and you can get to where we are now. Best wishes James.

2 likes
Reply

Thanks James for your speedy positive reply. 5 years post op is great news and we are both very happy to have a different LIFE as we now realise how precious it is. I just feel that we are currently in the calm before the storm as my husband does not feel sick apart from following his new baby diet since he experienced swallowing problems for the last eight weeks.

Thanks again

#hopefulwife

Reply

James

Thank you for your lovely reply and make the most of every special day in your life.

Deirdre

Reply

I’m sorry to hear your news I wish i could give you some positive news about this beast of a cancer. My husband was diagnosed stage 4 and his only symptom was trouble swallowing and we went right away to doctor to have it checked out to find out stage 4 which was discovered after a PET scan. I’ll never forget that sad news in the doctors office that day. 15 month battle, surgery was never an option, only chemo and radiation. A Facebook private group with All esophageal patients and caregivers that were helpful to us throughout the cancer journey is great. You can send a request to join.....https://www.facebook.com/groups/87032539390/

If i can help answer any questions here is my email....donnathompson@bell.net.

Donna

1 like
Reply

Thanks Donna for your reply

I will send a friend request to the group.

How soon did you get the results after the PET scan?

Reply

Zoe

I am devastated that my hubby has also been diagnosed with stage 4 and an operation is out of the question.

Numb and devastated at the moment. I would be happy to get 15 months more.

D

Reply

Donna

Any chance you repost the link to the Facebook group again? It won't let me copy and paste it.

Thanks

D

Reply

Do you have a Facebook account ? If so send me a friend request I’m Donnabondthompson

Im in canada

Reply

Hi,

I'm three years post op in a little under a fortnights time. I was diagnosed with T1bN0M0 prior to surgery and, like your husband was never 'sick'. Mine was found due to black stools vs. Trouble swallowing.

I was fortunate enough to go private and the array of tests were fast and furious - CT, MRI, PET, Ultrasounds, etc. Bewildering to be honest. I never went through chemo prior to surgery. Surgery was tough - 1/2 stomach and 1/3 oesophagus removed along with 57 lymph nodes.

Post op I was found to be T3N0M0 so went through 6 cycles of ECX.

Not sure what was worse - recovery (24 days in hospital), the lack of dignity associated with a JED feeding tube or the ECX chemo. Each was terrible in its own way.

My diet has changed, my view on life has changed, my relationship has changed, my friendships have changed. I'm more pragmatic, less judgemental, more comfortable with lots of things.

It's been the hardest three years of my life but I have learned a lot about myself and the people around me.

All I can say is stay strong and look forward. You and your husband owe it all around you not to dwell on the negative. To be brutually honest it's really hard work but, you really don't have my choice but to go for it with all you have.

The positives are immense... he will be alive for a start. You will cope, the surgery is hard, the recovery is harder. But, if my journey and the others I've spoken to and emailed is the one he will have you will get through it.

Keep us updated. Wishing you all the best.

5 likes
Reply

Thanks Pete

You are exactly right...to me having him alive.....is all I want really!

I am delighted to hear you are three years post op...maybe you life has changed for the better 😘

Thanks

Dee x

Reply

I am three years Post Op, diagnosed when aged 57. I had the "normal" pre & post op chemotherapy with a "transchiatal Oesophagectomy" = slightly less invasive procedure carried at at St Thomas's in London by the wonderful Mr James Gossage and his Team.

* I am still cancer free.

* I have seen my two Grand Daughters Born.

* I am back working full time in the City.

* I watched my own Daughters develop into beautiful young women.

* I returned to playing 18 holes of golf every week.

* I scored my first and only hole in one.

* I walk my two Siberian Husky Dogs for six miles, seven days a week.

In Summary:

I do more now, enjoying life more now, than I ever did!!

Make no mistake. It is a very hard and very long fight with more than it's fair share of bumps in the road. My wife never gave up on me and never let me give up on myself. I met the most fantastic & dedicated medical professionals that could ever exist, and I never knew did exist.

Would I recommend it? No I would not. But it is survivable and you can do so with a very good quality of life.

I wish you both well. Good luck.

Bruce

4 likes
Reply

Wonderful response Bruce, thank you so much.

A huge well done to your wife and you on getting through the journey.

Dee x

Reply

Hi I was diagnosed with stage 2 following similar symptoms as your husband.As human beings we are most uplifted when we can help others. I suppose in a way that following confirmation of my diagnosis my second granddaughter was born, believe it or not on the same day, my thoughts left the morbid and went onto the future for my family. Life continues well, although I have mood changes during chemo, but the discipline for eating helps, and also telling people what I have.It really helped me the good wishes from friends and acquaintances. Having cancer has made me softer,in relationships, I am more empathetic. My mind automatically switched from myself to how my wife and I would help our children. I continue helping my elderly mother. The support at hospital has been excellent, and I found the chemo not as bad as I supposed it may have been. I have substituted some activities, from going to the gym, or swimming to walking, and decorating our house. I also go online to audible books, and seek out those dvds of films that I wanted to watch and never got round to. I manage a glass of wine once a week, and a pint of Guiness, and sitting in a pub. I hope that things go well. And to all of you thankyou for the posts it really does help.

2 likes
Reply

Phil this is a lovely response and the glass of wine and a pint of Guinness has lifted my hubby immediately. Well done for getting through and continue enjoying life.

Dee

Reply

Hi Dee,

My husband was diagnosed with the same last October. He started chemo at the beginning of December and has just had his 3rd session. His last one will be on January 19, after which he'll have a CT scan to see whether he's suitable for surgery. If so, that will take place around mid March.

Like you, I am worried sick. The PET scan is to look for any "rogue cells" which may have taken up residence elsewhere. In my husband's case it was clear.

I know its easily said, but try to remain as positive as you can. In our case the chemo isn't nearly as bad as we'd feared. Yes, he does get tired easily and sometimes feels a bit nauseous, but rest and anti-emetics help with that. On the positive side, he can eat much better and (with care) manage most things so long as he takes it slowly.

I know we still have a long way to go, but believe me, this forum is full of kind people who will share their experiences (either as the patient or carer). There are those who will respond who are several years down the line and doing well. You are not alone and will find loads of virtual support here. I, too, felt alone and scared, but have found comfort from the lovely folk on this site - as well as advice and encouragement. No question is too trivial and no fear ignored - so don't be afraid to ask or say when you need a reassuring word.

Sending best wishes to you both and a virtual 🤗!

Kate

2 likes
Reply

Thanks Kate for your lovely reply and I will be torturing you all with questions in here. Best of luck to you and your husband on the rest of your journey.

Thanks

Dee

1 like
Reply

I had my surgery early February 2007 after having had 3 months of chemo 'the the hope of surgery', I was very ill post my total esophagectomy with lots of very severe complications but I did come out the other side. I decided to try to have children before being a 5 year survivor, they are 6 and 7 at this stage. I also married 2 weeks post chemo so am 11 years married at this stage. I do have a life and am 43 at this stage.

2 likes
Reply

Aoife, thanks for your lovely response and reading this has given us hope.

Dee x

1 like
Reply

Hi Dee. On the 3rd of April it will be 11 years since I had my surgery. There have been people on this site who have a lot longer post op than that.

Best wishes to you both.

Kind Regards Steve

2 likes
Reply

Great news, Thanks Steve

Reply

I'm just coming up to 5 years post op from advanced stage 3 OG cancer - I'm back at work full time, run marathons, half marathons and triathlons and have travelled to lots of places I've always wanted to go. The road is tough I'm not going to lie but life does get better, I've got my fingers crossed that the scans go well and give you the results you want xx

2 likes
Reply

Thanks so much for your inspirational post which is exactly what we need at this stage.

Dee x

Reply

Hi Dee- I am coming up to a year post op in Feb of this year I had adenocarcinoma which had spread to one of my lymph nodes - I was 43 at time of diagnosis with two small children. I have had a total oesophagectomy with lymph node removal as well. I was only on the feeding tube for a short time and had to undertake 6 rounds of ECX Chemo- which I found far worse than my surgery. I have made very good recovery and suffer little if any complications. I don't have the same problem with eating as most on here have - I see that I am one of the lucky ones! I do however have an issue now with blood sugar levels and having to monitor those in case I get a hypo - something which has only occurred in the past few month. It does definitely change your outlook on life as those have previously said but I think I am now a better person for it! I found this site extremely helpful in answering my questions as those that had been through it prior to me gave me some very helpful advice, tips and mental preparation beforehand. I hope you and your husband will also find it beneficial - as others have said no question is ever a silly question and there might be someone on here that has experienced the same or has been or going through it also.

Sending you both healing thoughts and well wishes for the next step of his journey.

Jo

3 likes
Reply

Thanks Jo for your heart warming response and we are delighted to hear that that you came out the other side so well.

Dee x

Reply

Hi Dee,

I'm sorry to hear about your husband's diagnosis, I remember how devastated I felt when my husband was diagnosed T3 N2 in May 2016.

As people have said, the road is tough, as we are still finding (Dave is 12 months post IL), BUT the support on the groups is helpful and encouraging.

Take one day at a time, and ask questions, no matter how small. There are lots of people who will support you.

I am also on Facebook (I'm the one with pictures of greyhounds!!) and will happily help.

Nobody can change what you are going through, but sometimes just knowing you are not entirely on your own can help.

Good luck to you both on your journey, and keep us posted!

Best Wishes,

Lynn x

1 like
Reply

Thanks Lyn

I am overwhelmed at the response from my post and delighted to hear all positive feedback. Best little luck to your hubby too.

Dee x

Reply

It started when I was 58yrs old. Shortage of beds and funding led to 2 cancelled ops. so I went to my MP in desperation. Two days later I had my operation, later I learnt that my surgeon hope to give me another 3yrs. Life changed and I had to cram in as much as I could to my remaining years. I've seen my children married, my grandchildren growing up and I have done far more than I would have ever expected. I'm 82yrs old now and still busy. How do you celebrate all those years you weren't going to have ? I took my grandson up to Bodyflight and then followed him up the wind tunnel ( flying without an aeroplane) It has been an unpredictable and bumpy journey at times, made easier by the enormous support that has come from all sorts of unexpected sources. Travel with hope, you are not alone. Thinking of you and wishing you well Sally

3 likes
Reply

Sally

Wow what a fantastic story, my hubby laughed when I read this post to him. Thanks for your lovely response.

Dee x

Reply

An OPA support group will contain a room full of people who have survived their cancer treatment, many of them with the same diagnosis as your husband's. They won't all have been body flying like Sally, but some will have been out cycling and generally getting on with life. David Kirby, who started the OPA is still alive and well over forty years later. But when you receive the diagnosis you do not have a reason to know about these success stories. It is something to look forward to even though the treatment is sometimes a hard road with a few bumps in it. It would not be right not to worry, but you have to face the journey together, and that takes a bit of doing. It puts life into perspective, and you also have to cope with the various reactions of friends and relatives; they will not all be as you would want them to be, but you will find sources of strength from unexpected sources.

2 likes
Reply

Thank you Alan and I am so delighted that I joined this support group as I believe that positivity is contagious.

#readyforbattle

Dee

2 likes
Reply

I frequently find that when I read the posts on this site, it is inspirational, and enveloped in positivity and support. In the early days following my wife’s op, this group got me through!

1 like
Reply

I was diagnosed stage 3 oesophageal cancer at 33, I had 3 lots of chemo then surgery and 1 cycle chemo after, I’m now clear 6 years....hardest thing I’ve ever had to go through...now enjoying life again, eating still proves some issues but mainly good and I’m working full time...

Good luck with to your hubby...sending love

Lucy x

3 likes
Reply

Brilliant news Lucy, thanks a million for your reply.

Dee x

Reply

Hi I’m nearly 8 years post op, finally put some weight on. It has been a long tough and often unexpected journey, but I have learnt a lot about letting my body have time to recover, and recognising the limits of my energy now. Life is actually more enjoyable than before. Good luck and take each day as it comes. Hugs Lizzy

2 likes
Reply

Thanks Lizzy

I am delighted to hear you are 8 years post op and enjoying life. We can't wait to get to the other side.

Thanks

Dee x

Reply

HI Dee-

Just wanted to respond with some encouragement for you, as a care giver. My husband was diagnosed in August 2016 at Stage 2B after swallowing problems. He did Chemo and radiation pre-op and then the surgery in January 2017. So, we are one year post-op and he just had a clean scan. The worry is overwhelming at first, and you literally just have to keep putting one foot in front of the other and take it day by day. I learned to let my friends help and encourage me, and admit or ask when I needed it. I also learned to be emotional in my private time so that I could be stronger when my husband needed to talk about his feelings. I did a lot of shower crying, and crying in the car :) Also, we fit in as much "life" around the treatment as we could, taking 2 weekend getaways between the chemo/radiation and the surgery time, and developing interests that were not related to food.

After surgery was the hardest time for us, as he hated feeling helpless, and we didn't have a lot of information about diet and how to modify his eating habits so he could feel good. I felt helpless too. But please know that it does improve!! It has been a year, and we are amazed at how strong he feels, and how much we have learned about his eating and nutrition. HIs life has very good quality now, and our family appreciates life so much more. This forum has been so valuable to us, so you have already taken such a positive step--lots of survivors on here. There is hope!!!

1 like
Reply

Wow thank you so much for this lovely response, at this stage of the game we need to hear success stories to help us our one foot in front of the other. Thanks again

Dee

Reply

Hi the waiting game is the worse from being diagnosed to having scans etc.normally 2 weeks for results and for the team to get together and put a plan together. Once you know you just get on with it. Each step at a time. I had 3 courses of chemo then op then 3 more courses of chemo. Best advice is to get a notebook record how you are feeling each day once you start treatment. There is ups and downs and hiccups. It is a very worrying time. You will have a point of contact at hospital as in a nurse. We all ask lots of questions on here and once you get through it you will be answering questions.

Remain positive I know it’s hard especially for the loved ones that go through it with you.

I had op March 2016 took tumour and 1/4 of stomach.

Best wishes

Debbie

1 like
Reply

Well wrote James. 11 years ago I had a battle to get diagnosed I was in a lot of pain for months getting no where, eventually choking on food. Knowing something was seriously wrong (desperate) I paid to see a specialist would not be here now if I had not. Did not expect the c word but turned out I had a tumour on the join of the O/stomach. Celebrated 10 years last March (date of my op) stage 4 took the stomach lower O and some lymph nodes. It is a long hard journey and life changing and whilst I never get a good day one thing and another time heals, I am here got used to it. The good out weigh's the bad!! Keep strong!! Positive!! You will see the light at the end of the tunnel. Wishing you all the best!

2 likes
Reply

Thank you so much for your reply. 11 years on, great work, well done!

Dee

Reply

My wife had OC 4 years ago. Whilst recovery is slow, you will get there. She is now doing really well, so will your husband!

My mother had OC at the age of 59. She died at the age of 82 with pneumonia!

The most important thing is to keep thinking positive (although there will be times when this will be difficult) as this will help with the recovery.

I can understand what you are going through, when my wife was diagnosed I felt devastated, I cried alone, and sobbed internally until I knew my wife was OK. Our love for each other is stronger than ever .

If you ever need a chat with another spouse that has been ‘through it’ please pm me.

Hugs

Steve

1 like
Reply

So many encouraging words, well merited. I was diagnosed at age 70 and, 12 years later, enjoy golf at least 2 days per week and an active life. The op is not fun and the recovery is helped by a positive attitude. You've heard enough to have that so you'll come through it together. God bless.

2 likes
Reply

Thanks Steve for lovely reply

Reply

I am now 6 years since discovery of stage 3 oesophageal cancer diagnosed age 49. The usual chemo and the big op followed by what I can only describe as a long and challenging recovery. However life is almost back to normal apart from the odd dietary issues and still occasionally getting it wrong and sent into a bit of a spin. Life is however sweeter as I appreciate everything so much more - I keep far healthier ( go running 3 times a week) and slimmer and family and friends say I look great! My philosophy was to take one day at a time, do everything the doctors recommended and remember that I was "living" with cancer. Wishing you and your husband all the best, Julie

2 likes
Reply

Thanks a million for your lovely comment Julie. I am delighted to hear that you are doing so well

D

Reply

Hi Dee, my Mum had a stage 2/3 oesophagus tumour 12 years ago (aged 51) they couldn’t do the op at that time she had lost too much reserve fat and her oesophagus was laying to close to her aorta, it was too much of a risk. Her surgeon and oncologist decided to give her 360 hours of chemotherapy ( Monday to Friday in hospital for 3 alternative weeks) and 25 radiotherapy sessions and all has been fine until last September. They discovered high grade dysplasia, this time after all of the tests and pet scan they decided the operation was the best route, she had her Ivor Lewis op 8 weeks ago (aged 63) , the pathology came back and it was a stage 1 tumour, no lymph node involvement, so thankfully no post op chemo needed! The op was definitely the right path to take. It’s been hard and we have had a few hurdles to over come but she is improving week by week. She is eating better now than she has for years! I think her treatment 12 years ago left quite a lot of scar tissue in her oesophagus which still made certain food difficult to get down.

A positive patient and family mindset helps. Her surgeon and medical team have been fantastic. Stay strong look forward, this can be beaten! This group is great support, it makes me so happy reading about members who have had successful responses to their treatment and are back enjoying their life.

Sending you both healing and positive thoughts.

Good Luck

Debs x

Reply

Hi

My husband was diagnosed with stage 3 tumour last March. 9 weeks of chemotherapy were followed by 6 weeks to recover some strength before undergoing IL in August. He has just finished a further 9 weeks of post op chemo. He sits in his chair as I type busying himself on his computer. Our experience of the medical teams caring for him has been second to none. They have all been brilliant and have walked beside us every step of the way - and I say 'us' because they have supported me as well. Compared to many of the wonderful replies you have already received, it is still early days for us, but all we can do is to take one day at a time. With every good wish to you and your husband.

1 like
Reply

Hi, I hope you have had some more progress since your post and are doing well. I can help you with lots of information from a wife's perspective and the things that happened. My husband was diagnosed with T3,N2. He managed to survive for 3.5 years and underwent chemo, Ivor Lewis Oesophagectomy and Radiotherapy. Every one responds to the treatments differently and he was at a disadvantage as he had the previous year suffered from a Heart Attack and triple bypass, followed by a major infection. He then had many other issues along the way, that were not directly linked to the cancer. My advice to you is to try and find anything you can eat. That was half of my husbands problem, he could hardly eat anymore. Another little trick, if you can't drink, drink from a t-spoon every few minutes. It tricks the body into drinking far more than it would otherwise do. Stay positive and keep fighting the whole time. Wishing you all the best of luck. I am always happy to talk about things he went through.

Reply

You may also like...