Diagnosis

Hello Papajoe461

Welcome to the forum, I am sorry to read of your diagnosis, and that you have not been offered surgery, my husband was not offered surgery either and was informed that even if the treatment helped to clear up the secondaries he still would not get surgery. Difficult news to hear for us, maybe also for you, but your oncologist should tell you their reasoning for why surgery is not an option for you.

As for Chemo, my husband is undertaking treatment, starting of with intense chemotherapy and moving on to immunotherapy/chemo, this has been given every fortnight he has the immunotherapy at the day hospital and then comes home with the chemo bottle which he has on for 24 hours.. Everyone is different, and some  people can't take this treatment, and as you say, you have seen what it can do, but for him, it has truthfully been a life saver. Diagnosed last May, we were advised that without treatment he would have possibly lived less than 4 months, he is now coming up to one year and he is doing extremely well, he had lost most of his hair and began to look extremely old, but within a few months things started changing, he now has an "almost" full head of hair, he looks great, younger and happier, and like yourself has undertaken a diet change, which focuses on foods high in anti-oxidants.

I wish you every success with the diet change and we are here for you should you want to reach out, chat, rant or just to learn how others have coped.

You can if you need to reach out to the Macmillan team on the number below in my signature strip, and if it would interest you I have written a blog of our Journey so far, you can read the start of it HERE if you would like to.

Sending Strength

Lowe'

Hi Papajoe461

My husband had OC - diagnosis was in July 2008 and he was told surgery was not an option because it was too risky.  His prognosis wasn’t good but they did offer chemo (ECX) and he decided to give it a go.  11 months later his tumour had almost gone, the lymph nodes that  were affecting the possibility of surgery had returned to normal and the surgeon said he would operate.  He had a full oesophagectomy in June 2009 and he is now living a full life with very few limitations.

I would definitely dig deeper to find out why you are not being offered surgery, perhaps even get a second opinion.  Some surgeons are more cautious than others, the OPA can always help with recommendations - they have access to so much information.

I hope you have good support, it’s a lot to cope with.

Best wishes.

J x

1. Hi, you need to ask why they won't operate on you. I was the exact same staging as you, T3 N2 M0. I declined the chemotherapy and radiotherapy treatment and had the Ivor Lewis surgery. That was in October 2016 and I have done well since then. You need to push for an answer and if you're not happy with the answer then ask for a second opinion. Good luck and keep us posted on the outcome. Kind regards Frank.

It was great to read your message, I have just been told by a nurse that I have Oesophageal Cancer, that on the CT scan looks local but that the local lymph nodes are enlarged. Your husbands story is a light during a very dark day. My next step is a PET scan tomorrow.

Hello Graham67

I’m glad my message helped, I think the positive stories really need to be told and I’m always open to any questions.  My husband doesn’t ‘do’ technology so it’s down to me to try to share what happened to him. 

I hope your PET scan went ok, they give a much more detailed picture of what’s happening and where.  Do keep us posted on how you are getting on.

Best wishes.

J x

I will do. I have a laparoscopy on Wednesday and CT ultrasound on Friday. Its full on but I view it as a way to help construct a treatment plan.

Hi Graham67

I hope your further tests went ok and your team now have a fuller picture to get your treatment started.  It’s a really hard time, like being in limbo, but once decisions have been made and you are under the oncology umbrella things become more structured and your personal treatment plan will be drawn up. My only advice would be to keep in close contact with your team so they don’t keep you waiting too long.

J x

Hi J,

All but one test are finished and Ive been told that the measurements are T3 N1 M0. I have one Cardio and lung test on the 10th to ensure I could handle the operation. Their intention is to look at a curative care path rather than Palative. Next steps will be FLOT and if all goes well - surgery. I know the treatment is tough but my objective is to keep an eye on a positive outcome. Its not what life throws at you, its how you react that is important.