To operate or not to operate

Hiya,

I'm facing a bit of a dilemma after a hospital consultation today and I'm just a bit blindsided about what my options are. 
I had a seed of cancer within a bowel polyp, removed by endomucosal resection in November 2021. I had a clear margin but only by less than 1mm. The polyp had no lymphovascular invasion and late last year was classed as well differentiated. I was told that the cancer was in the polyp and hadn't invaded the bowel wall, which was great news (considering). I had a clear CT scan, a clear MRI, and a second flexible sigmoidoscopy to check the area revealed that the area which had the polyp looked totally healthy again. Therefore I was expecting good news from my follow up consultation. 

Fast forward to today and the doctor (who seemed wildly unprepared, was an hour late, and didn't realise we were meeting today) told me that the cancer was moderately differentiated (whereas all notes have said well differentiated before). He said that the MDT notes recommended I either have watch and wait surveillance, or I have surgery to remove 20cm of rectum and colon along with the surrounding lymph nodes. This surgery was listed as a worst case scenario back in November 2021, but would be the only sure fire way that nothing spread to the lymph nodes despite there being no LVI. I was assured that the chance of it having spread to the lymph was 5%. Therefore in November this was deemed as worst case scenario. I have had all these clear scans and endoscopies since but my doctor today just told me he wants me to have the surgery. I feel so torn. I'm only 34 and don't want to have to live with a bag- it all feels so excessive to me given everything has been clear and multiple doctors up to this point have said I will just have to have scans and surveillance because "they got it all". One doctor during a pre-assessment said they could discharge me if my MRI was clear (it was). 
 

I'm just so torn whether to go ahead with the operation or not. It's major surgery involving resection, a temporary bag, then reversal. I feel like I'm gambling with my life by not having it, however if the risk of the cancer spreading to the lymph nodes is 5%, I see the surgery as being a 100% chance of changing my life forever. 
 

I'm so torn and would appreciate any advice or experiences you might have. I feel so broken by this and need some word of encouragement. 

all my love to you all, 

Betty

x

  • Hey, That feeling is the worst, I think being scared beforehand is one thing but when they actually find something that just floors you completely. When they said they found a polyp and couldn't tell if it was cancer or not I felt a out of body experience. The whole thing felt surreal like is this actually happening? Is this for real? Just felt like they made a mistake. Terrifying to say the least. I am glad you got the op done! Better safe then sorry! Atleast this way you know you have everything possible and you're not always on the edge of your seat when your not feeling good and think it's the cancer. 6cm in that is low my one was 12cm in and stil considered low. The consultants could not tell me where my bleeding was coming from, they weren't even sure if the polyp was causing it or if my hemorrhoids were causing it. Even though the pit pattern on my polyp looked dangerous it wasn't ulcerated. I researched all the medical jargon on my report and realised my pit pattern wasn't good it was a pit pattern VI pseudo depressed type, basically the worst of them all. So can not thank God enough for these histology results. 
    Hoping you get the best results from your histology I do feel like there was no lymph node involvement, due all the scans and what they said, but it's good to be precautious and glad you chose the best option. Xxx

  • Offline in reply to Sabr

    Hi Betty

    Just catching up on your update.  I'm so pleased you were able to get the rationale behind the (changed) decision and able to make an informed decision.  If they had given you this information at the initial appointment it would have saved you a lot of worry and anxiety!  

    Good to hear you are recovering well.  Let's hope that continues.  Best of Luck

    Claire xXx

  • Hi Claire

    Thank you so much for your reply! I completely agree, I wish they gave me this updated information when I first went in as it would have saved me so much angst! In hindsight I really didn't get on well with the first consultant - he didn't really take his time to explain much to me but the second consultant I saw, drew diagrams and explained everything in an intelligent but sympathetic way - I really appreciated his effort in explaining everything to me from start to finish in an informed way, unlike the glossing over I'd experienced previously! Thank you for all your good wishes. I'm in that nightmare place of awaiting more test results now (my post operative histology) and I'm having to stop myself going down the Google rabbit hole. I am dreading hearing that it's spread to the lymph nodes (apparently I am at a higher risk due to depth of invasion despite having no lymphovascular invasion and low grade tumour) so lots of nerves all round.
    [@Sabr]‍ I totally get the out of body experience you're referring to! Horrible isn't it - I'll never forget the shock. When is your next appointment? 
    All my love

    Betty

    xXx

  • [@bettyb1987]‍ hi love! I will never forget the feeling when they first found something, just feels like it's not you they're talking about, they must be talking about someone else. I had my 6 month check up on May and now I have my next one year check up next May, I am absolutely terrified for that. How are you ? What did they say ? Sending hugs xxx