9 Months post Ivor Lewis - possible recurrence

[jacwench]

Hi All

I'm 9 months post Ivor Lewis which I had done by the wonderful Dr Al-Bahrani at Watford General.

Since Christmas I've been experiencing back pain, stomach pain, vomiting which has been getting steadily worse. Had a gastroscopy on 13th March. They found a nodule on the oesophagus and there is a great deal of inflammation. Biopsy came back no cancer.

However a subsequent CT scan last Tuesday has shown a thickening of the oesophagus and two enlarged adjacent lymph nodes. Kathryn my nurse specialist has been asked by the MDT team to arrange a PET scan as soon as possible.

Has anyone else been in this situation only for it to be nothing?

I'm a pretty practical person and deal with things head on but the waiting drives you to distraction.

Any info would help. Jacqui

[brucemillar]

"Has anyone else been in this situation only for it to be nothing?"

Yes. 'Almost' identical. In my case I was told that it was a recurrence, but the PET scan and follow up Ultrasonic Endoscopy showed no recurrence but an "abnormality" on a lymph node on or next to my aorta. The decision (which I am very happy with) was to do absolutely nothing.

I have suffered with the upper back pain, that starts from my left shoulder blade, then works its way around to my front lower rib cage. If I walk (which I do a lot off) it does get really bad. I take Dihydrocodiene which helps. They can find no cause and do not believe it is surgical. But I think it is surgical nerve damage. I dd not have the broken ribs, or left arm stretched, as I had a Transchiatal Oesophagectomy.

You may have strained yourself or picked up an infection and I do hope that this is all it is. I am 2.5 years post op now with James Gossage at St Thomas's. Life is starting to be very good again and I am used to my aches and pains. James and his team has been fabulous beyond any expectation. Every call answered, every email responded to. I have had several successful dilation's of my throat and stomach, which have always helped with pain and discomfort.

Good luck. I wish you well.

Bruce

[kiddy]

Hi yes i am 12 months post op i had all clear in July however when i had CT SCAN in Feb it came back with enlarged lymph nodes. I had had a cold/chest thing and they agreed to rescan after 5 weeks. Just had scan and the lymph nodes had reduced in size they think it was due to infection. I am having a repeat scan in 2 months to make sure. I could of started another dose of chemo if i had let them!!

Debbie

[jacwench in reply to kiddy]

Hi Debbie

Thanks for your reply. I'm really glad it turned out well for you.

I haven't had any colds/chest infections but I am keeping my fingers crossed. Jacqui

[haward]

When do you get the stomach pain? And is it a cramp type of pain? I still get this four years post op. It happens after eating, lasts for around 20-30 minutes it's nasty while it happens. It happens less and less but I still get it occasionally.

[jacwench in reply to haward]

Hi Haward

The pain does tend to happen after I eat. It feels as if someone has their hand inside me and is constantly squeezing. I find if I kneel down with my front laying on a chair the pain eases a bit.

The shoulder pain is pretty much constant and only really goes if I take painkillers, which I try not to unless I really have to.

My main worry is the enlarged lymph nodes as I haven't had any colds/coughs that would indicate an infection.

My PET scan is on Wednesday 12th April, so I am keeping my fingers crossed. Jacqui