I'm stuck what to do

Clair2024 over 1 year ago

5 replies
116 subscribers
722 views

Hi , All

I had a colonoscopy for bowel problems , recieved a letter for a hospital appointment and nearly fell off my chair when they said the polyp they removed had cancer in it ,.the way he described it to me was

"If you think of an egg the yolk was the cancer but it was very close in the white /skin,

You have 2 options, first one we do surveillance or high antenna resection surgery"

In the room I was quite adamant I want surgery I want that part out ,

However the letter they sent my GP it seems he doesn't want me to have the surgery , and it said the polyp was "cancer pt1 haggit level 3"

(Don't know what that means)

But after he sent that letter I'd just had a flexamology sigmoid, for 3 tattoos to be placed , on the results it said "tiny flat adenoma on the mucosa of the last tattoo (the one they placed when they did the colonoscopy where they took out the polyp)

I don't know what to do , and I'm confused , I was given this massive folder with EVERYTHING to do with cancer , help forms , etc ,

And I'm confused because if they took the cancer out then am I a cancer patient ?

And also should I go for the surgery incase there is something else they find ? , I'm worried if I go for surveillance and they don't spot something , and it spreads quickly ,

And also wait times can be pushed back,

My specialist says "given the patient has recently undergone a nisson fundoplication operation she would not have keyhole surgery, and the likelihood of finding cancer cells is 5% depending on what studys you read" she will however undergo the possibility of morbidity from the operation"

"In the end we discussed morality which lies at less than 1% in 3 months , there is a possible risk of systemic cancer cells being present which would be unaffected by the operation , in addition if lymph nodes are proven to be positive for adenocarcinoma we would offer her chemotherapy"

This is why I'm confused he says about having surveillance, yet he might find cancerous cells ??

Has anyone else been in a similar situation any advice greatly appreciate and love n light to those who have been diagnosed ️

Binzy over 1 year ago

Hi....I've just had anterior resection last Thursday. I had polyps removed, 1 contained cancer cells. Was given same options but I wanted operation to make sure was out. Surgeons agreed with me. Noone said types other than it had 1 or 2 features which made it look like it was acting aggressively. They said they look for at least a 1mm margin between the cancer and edge of polyp to be confident its contained within polyp but mine was 0.7mm. Have you had CT scan? I'm still awaiting results of the bowel part they removed and any lymph nodes. They checking for microscopic cells.

court over 1 year ago

Hi Clair2024

I would find that confusing too and would be tempted to consider a second opinion to see what another clinician thought . Your GP could help you but you also might like to phone our helpline 0808 808 0000

They could get someone to help you understand what they are trying to say .
Take care ,

Court

Helpline Number 0808 808 0000

AngelaV over 1 year ago

Hi Clair2024

The information you have is very confusing, isn't it?

I can't say I understand it all, but as to your final question:

In my case, they found what they called "unexpected cancer" in a polyp they removed at the colonoscopy, then offered me either surgery or surveillance. I chose surgery.

My reasons were that I couldn't stand the constant worry about whether there was more cancer in my bowel, especially given my level of anxiety waiting for results of the colonoscopy and subsequent CT scan.

You'll need to make your own decision of course, but court has given great advice about getting a second opinion.

Take care,

Angela

Binzy over 1 year ago

Hi Clair2024

Sorry I meant to finish my reply before sending last night. So as far as im aware i've Adenocarcinoma but there was chance could be microscopic cells left behind as the cancer lay close to cut of polyp. That's how it was all described to me. So if any microscopic cells there and in any lymph nodes then I will need chemo.

Sending love

Take Care

Binzy

CrumpetsOrToast over 1 year ago

Hi Clair2024

I am saddened to hear you getting this type of information by letter. Could you ask for a face to face or phone consultation to discuss the letter with the specialist or a CSN?

It sounds like you've previously had some surgery - is that to control reflux or bile? Previous surgeries can change what treatment routes ahead maybe more or less benefical.

Once you can get a consultation, I believe they can answer your questions and help you choose which pros and cons are most important to you.