It’s back, localised to scarring, nee... - Oesophageal Patie...

Oesophageal Patients Association
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It’s back, localised to scarring, needs surgery

So got the news last wk that I will need surgery but because it is not very common they had to call in some favours. Looks like I will be heading to Southampton for the surgery.

Bit worried & trying to bulk up which is not easy when I find it hard to eat because of the polyp growing at the scar. Ordered some protein powder & trying to graze constantly.

Getting really fed up & annoyed with this

Zantri

Xx

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Hi Zantri,

so it's not cancerous? A polyp, please explain.

All my best, Monika

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Polyp was detected, 5 biopsies removed & they found cancerous cells.

CT & PET scan have shown no further spread so it’s local to scar from when I had gastrectomy.

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Sorry to hear that. They will have a big meeting about you then call you in and give you a plan of what is going to happen. It’s normally 2 week wait. Not sure if it is the same op as I had Ivor Lewis oesphagectamy, it might be less invasive. Carry on getting fit as you can.

Best of Luck

Debbie

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They have already had the big meeting, now it’s arranging the surgery, meeting them & hoping I pass their requirements for the op. Physical etc. Having lost a lot of weight from previous surgery, chemo etc I am just under 9 stone at 5 ft 8 so quite skinny.

I walk the dog daily & as long as I get my vitamin b12 injection I am ok. Just usual worries/concerns & I need to understand the risks, how much time I may need.

Zantri,

Xx

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So sorry to hear that Zantri, I hate this disease. Good to hear CT/PET scans show it hasn’t spread, it’s great that your team is going all out and calling in help to sort it out.

I’m not surprised you’re getting fed up, it’s ok not to be ok, you’ve endured so much already and to need further treatment is cruel.

I’m thinking of you.

Lou xx

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Thank you,

Had a few wobbles but I will face this head on & get through this but I just need to rant occasionally & this place is great for that

Zantri

Xx

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Feel free to rant, always here to lend an ear and support x

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Sorry to hear that Zantri. What difficult news for you. It’s good to hear that you are going somewhere with the specialist skills you now need. I was in hospital 70 miles from home for seven weeks as I had a major complication after my surgery. But it’s worked! So good luck! You have such a pro active approach to treatment which is lovely to hear! I wish you all the best but think with your determination and an excellent team those cancer cells will meet their match. I hope everything goes well for you.

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Thank you,

I am sure it will all go well, just scary when you do not know the facts & sometimes scarier when you do.

The support on here means a lot

Zantri

Xx

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Hi Zantri, Sorry to see you have had this setback, this is the first time i have posted since my IL oesophagectomy in july 2016. Age 57. Adeno Carcinoma. Struggled with the chemo, and eating, but forced myself back from 9 stone to my current 10.5 stone. During this time i have had 3 more diagnosed cases of new identical disease. October 2017, lump detected on IL scar by right shoulder blade, removed november 2017. Pet scan feb 2018 revealed Lesions across posterior ribs 3, four and 5, just above IL scar. Folfox Chemo March 2018. 5 cycles then Pet scan revealed full remission May 2018. Another lump discovered Jan 2019. Removed Feb 2019. Pet scan March 2019, No metabolic disease. {remission} of sorts. This experience is extremely rare, but it does happen. The experts are not sure what to do so i am to wait and see. Any more of this and chemo radio therapy may well have to be used. So you see it can be quite a roller coaster ride, but the doctors have got your back, keep active, Get your Protein and calories any way you can, i resorted to 10 meals a day {basically a hand full} spaced an hour or so apart, and capacity and comfort improves quite quickly, and now at around 75% of normal capacity, which is totally fine. Hope this helps. Before anyone asks, yes i do get really pissed off and angry, but i am still here moaning about it, but it soon passes. I remain positive and optomistic and so must you.

My best wishes go to you, Good Luck, Graham

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