New to cancer: My partner has been told... - Oesophageal Patie...

Oesophageal Patients Association
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New to cancer

RGML
RGML

My partner has been told after 2 units of blood, iron and a CT scan that he has a 9cm tumour in his oesophagus. They said today that this is quite large, however it has not spread elsewhere.

He will be getting a biopsy tomorrow.

Has anyone had experience of anything similar in size?

Many thanks

20 Replies
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Yes, mine was the size of a golf ball and had spread to one lymph node.

My bio has my update since diagnosis in September 2018.

Hard slog but worth it.

Hi my friend my husband had a 7cm tumour in his oesophagus had an Ivor Lewis op in nov 2017 didn’t need chemo very lucky 🍀 his was found in 2015 but in 2017 went to his stomach which they removed so his stomach is just a tube now! But he is doing brilliantly! Good luck for you & your partner praying for you 🙏🍀😘

Hi - glad you found your way here - your partner will go through a staging process over the coming weeks - this gathers information on the tumour - at some point you will get to sit down with the consultant and they will discuss it all with you .

I was 48 when diagnosed and knew very little about cancer - I also needed iron infusions at the start.

There is lots of help here - you can search the site or press on peoples name and see what they’ve written.

Stay strong

RGML
RGML
in reply to Molly14

Thanks! My partner is 45 and this was such a massive blow.

My husband has got a 7 cm tuma in the lower half of his oesophagus it's where his oesophagus joins his stomach he is on his 3rd cycle of chemo he has about 15 days left and he has a scan booked for the 20th then consultant and if all ok his surgery will be done on 16th march its dornting when you first find out and things seem to take forever hope all goes well for you both keep me updated if you don't mind good luck

Sorry you are both having this problem. I was in this position two years ago. It sounds like they have more confirmation and staging assessment to do so try not to get ahead of your selves. The absence of any spreading is very good and you’ll find that the cancer pathway moves you along pretty quickly. Once on the pathway I was very impressed and now in remission I thank God for the skills of the oncologist, surgeon, specialist nurses, chemo team etc etc. I wish you both well. The best guidance I can give is to stay fit and active. Fresh air and lots of walking with strengthen you and help you fight what is to come. Good luck and best wishes

Tanktank

RGML
RGML
in reply to Tanktank

Thanks, I was glad to hear it hasn’t spread but we were worried as the doctor said last night that it was particularly big which wasn’t great.

Fingers crossed.

My husband's tumour was real biggie and he was 76 when he had the op 8 years ago. But he made a really good recovery and is well and active to this day.

Good luck. It's not pleasant and the treatment and recovery are hard. Have faith in the medics and keep friends and family around.

Cripes ! Not 9cm - no. Mine was circa 1cm in size. Have they graded it yet ?

I had Ivor Lewis in January 2015. Chemo after the surgery. Going in they thought T1bN0M0, after opening me up T3N0M0.

Lost 1/2 stomach and 1/3 oesophagus

Make sure he really likes his surgeon - absolutely critical. Also, reach out to the OPA. I got in touch with them and somehow (can't remember how it happened) ended up speaking to an amazing guy (who sadly is no longer with us - pancreatic got him) and having someone who had been through the process who wasn't family was truly amazing. I genuinely feel like I owe my life to this guy.

Initial surgeon I met was someone my husband and I simply didn't like. I mentioned this to my OPA "buddy" and was introduced to the chap who ended up operating on me. My husband and I were really impressed with this surgeon. Apart from the fact that he had his hands inside my body for 14 hours you're going to be on a journey with him for some time - I still see mine once a year....

Good luck. Positive thoughts. Life is good in a post Ivor-Lewis world - different but still good !

Keep us updated.

RGML
RGML
in reply to Aussiepete

No not graded yet, getting biopsy today then will meet with specialist next week.

We won’t have an option what surgeon as with the NHS.

Aussiepete
Aussiepete
in reply to RGML

keep us updated.

i was fortunate enough to be able to go private.

even though i have lived here for 20+ years i don’t fully understand how the NHS works when it comes to specialists, however, surely you have the right to a second opinion?

where are you in the country ?

Irrespectively, make sure you have a list of questions to ask when you see oncologists and surgeons. Make sure you get your answers! Make sure you challenge terms and phrases used if you don’t understand.

The language these guys use is technical and, if you’re not in the field you won’t understand all you’re being told. Don’t be afraid to seek clarification,

I’d been given the above advice and even then still woke up from surgery to learn things.

Ask your surgeon how many IL’s he’s done - ever and in the last year, Ask about his complication rates, ask about recovery time, ask about complications.

Again, good luck.

Judley
Judley
in reply to Aussiepete

Sorry but what is OPA?

I was diagnosed with as stage 3 with an 11cm tumor at the age of 41 in late 2018. I also had 8 lymph nodes cancerous. On May 8th I had an Ivor Lewis and about 50 lymph nodes removed. After the operation my surgeon said there was evidence if the cancer having spread to one of my lungs, but the pre-op chemo had zapped it. I'm glad they didn't spot that before the operation as I'd have then been stage 4 with no option of the operation.

Life is now pretty much back to 'normal', although I've lost some weight and have to be careful not to eat too much in one sitting.

It's a crap place to be, but the operation is worth it when you consider the alternative.

I've now got 5 years of monitoring before getting the all clear.

Best of luck.

RGML
RGML
in reply to Danstable

Excellent news for you. I hope you continue to do well.

Nourish brain and body. First, learn as much as you can about this cancer and treatment options. For tumors of the sort you describe the FLOT-4 protocol has become something of a standard—perhaps more so in the US. It provides all chemo and radiation pre-op, when the body can tolerate the stuff better than after surgery. Push as far as you can to find a surgeon skilled in minimally invasive (MI) Ivor Lewis procedure, one who has performed many of them—higher numbers associate w/ better outcomes.

For the second, help your partner focus on good nutrition and a good exercise regimen, to withstand/offset effects of chemo and radiation, prep for coping with weight loss (10 days-2 weeks liquid diet while gastric pull-up heals leaches muscle protein). My therapist had me do double workouts two days pre-op, said raised endorphins would linger enough to significantly help speed recovery.

We look forward to you and partner sharing your recovery, good living with others in the months to come on this forum.

Partly for my own therapy I wrote a patient’s guide (c. 40 pgs) for this cancer—diagnosis, treatment, recovery. If of any use for you send me a pm and I’ll make a copy available.

I had a similar tumor that was called Adenocarcinoma. It was in the lower part of my esophagus

I live in Atlanta and I had 5 Chemo treatments and 28 radiation before surgery in Aug 2017. Then waited about a month for the 10 hour Esophagectomy surgery by two surgeons. One stomach (done orthroscopically ) and one thorax surgeon that used some robotics. After they finished the surgery and got back the biopsies, they said it had not spread and they believe they got it all. The Radiation and Chemo had really shrunk the tumor which had not spread outside of the esophagus.

After 2 1/2 years my oncologist thinks I am cured but still go for 6 month Cat scans.

Life today is pretty good even with two thirds of of my esophagus removed.

Good luck

I had similar symptoms and diagnosis. First week of 2014. Was late stage 3, went through chemo and radiation concurrently and when that was successful I qualified for an esophagectomy. They removed 3/4 of the esophagus and 2/3 of the stomach. Drastic and challenging but worth every minute of it. Now six years since diagnosis when they couldn't promise six months. There is hope.

RGML
RGML
in reply to mgloughran

That’s amazing things have worked out so well. I’m so confused about the stages...I thought stage 3 was if it had spread? I just can’t get my head around it all.

mgloughran
mgloughran
in reply to RGML

Spread to several local lymph nodes as well as one distant node. Chemo and radiation took care of all that so I qualified for the surgery.

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