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

  • Those are two very different pictures.  Can you get a second opinion?  
    It sounds like you got a Dr on a Monday bad day - an hour late and didn't know you were scheduled?  It's hardly going to build trust and confidence is it?  

    Your post reminded me of a positive watch and wait outcome on Macmillan's forum community.macmillan.org.uk/.../watch-and-wait-now-over-3-years-clear

  •  

    Hi Bettyb,

    This must have come as quite a shock, especially after being given so many all clear scans since your cancer removal. You could talk to your specialist nurse and ask her why there's been an about change. She may even be able to arrange for you to have a second opinion. I agree with Me_. With such a drastic turnaround, I would feel happier to have another opinion before you make any decision.

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you so much both of you, I really really appreciate your messages. It does seem very drastic doesn't it. 
     

    I could totally understand this recommendation to have surgery if the scans have been murky or if they weren't sure what was on the camera, but it's the fact that everything's been clear. Surely if something started to grow back it would be a no brained but I just can't get my head around something so extensive when the cancer didn't even invade the bowel wall- it's all out (or so they say).

    I have a follow up appointment with the Doctor who would be doing the surgery on 31st March so I'll let you know how I get on. I also might get a consultation done privately just to get a second (or third!) opinion. 

    Thank you so much 

    Betty x
     

     

  •  

    Hi Bettyb,

    I am so glad to hear that you have an appointment to see your surgeon on 31st March.  You are perfectly within your rights to ask for a second opinion within the NHS, although you might feel happier with a private consultation. Just check who you are seeing if you choose the private route, as the doctors in both the NHS and private are often one and the same.

    Was the doctor that you saw on Wednesday a consultant or just a registrar? I just wondered if you might have seen a junior doctor, who could have misinterpreted your results.

    Kind regards?

    Jolamine xx

  • Hi Jolamine

    Thanks so much for your advice - I will definitely check I'm not seeing the same doctor if i go for a private consultation!

     

    The consultant I saw who recommended the surgery doesn't do colorectal cancer surgery anymore and admitted that when I saw him. I stalked him on Google (!) and he's also a expert medical legal witness too, so I wonder if he is the type to lean more on the side of caution. The person I am seeing on 31st would be doing my surgery. 
     

    The most recent MDT meeting recommmended either watch and wait or the surgery so I'm just hoping watch and wait is still a feasible outcome. I don't mind having scans and endoscopies but losing my bowel for a cancer that was contained in a polyp and seems to have been caught early from all tests seems so extensive to me (but then again I'm not a doctor!)

    Thank you so much for your advice,

    betty x

  •  

    Hi Betty,

    It sounds as if the consultant you saw is a fairly seniour person if he no longer does colorectal surgery and is now also an expert medico-legal witness. As you  said, he may be more inclined to err on the side of caution because of this. Try not to worry too much (almost impossible, I know!). All you can do now is to wait until you see your surgeon and see what he has to say.

    Write down a list of questions before your appointment, as it is all too easy to forget to mention something important at your consultation.

    Kind regards,

    Jolamine xx

  • [@bettyb1987]‍ Hi hun I was wondering how you got on ? Did you have the op or are you on surveillance. I had a very large polyp taken out via EMR/ESD but I was out to sleep and the procedure took 2 hours. I had high and low grade dysplasia but at the moment I am bleeding again and ever so worried, I have a surveillance sigmoidoscopy this Saturday. I hope you are well. 

  • Hi Sabr

    Thanks so much for your message, so sorry to hear you are bleeding again, I remember reading how concerned you were about symptoms whilst you were pregnant and I hope you can get the tests you need soon for some peace of mind!

    Your message is very timely actually as I'm one week on from LAR surgery (total mesorectal excision) with temporary illeostomy. Because I was such a borderline case, my consultant asked the pathologist to review my specimin and the seed of cancer, albeit small, was sm3 depth of invasion into the bowel wall, so less than one mm from the muscular layer. Due to this I'm either a T1 or T2 tumour as apparently my MRI scan (which was clear) can't differentiate between the two and risk of mets to lymph nodes is around 15-25%. I decided to get it all whipped out now rather than watch and wait given this new information. 
    Hope this helps and feel free to ask me any questions. Feeling remarklably well only a week after surgery (although don't want to jinx it!) and my histology will be available in a couple of weeks time. 
    best wishes to you, 

    Betty xxxx

  • So great to hear that you are recovering well! I see you have read my posts lol. Well it's been a crazy two years, with them finally giving me a colonoscopy and then finding a not so great polyp that was actually very large 45mm and that is is pretty insane. I was so glad to hear the histology report and they also wrote they had good margins when they got the polyp out. So praying real hard it's just a hemorrhoids causing this bleeding and nothing serious I guess I will find out on Saturday. Wishing you all the best for your histology results! How are you coping with the stoma ? Also just wondering how far in did they find your tumor?  Xxx

  • Heya, thanks so much! 
    Yes you've definitely had a hard time of it haven't you, and I know the sick / panicky feeling that your posts demonstrated. It's the worst feeling isn't it :( I'm so glad your histology was good and that you got clear margins. My histology was reasonably positive - no lymphovascular invasion, mostly well differentiated with a portion of moderately differentiated, however the resection margin was less than 1mm and because it went to sub mucosal layer 3 I was deemed as too high risk in the end for watch and wait. The consultant said to me, if you were 70 something else would kill you first and not to bother, but you're young so we want to give you the best chance of cure and to avoid you having to deal with a later stage diagnosis in 10 years time if it crops up again. Something that changed my mind about the surgery was when the doctor talked about the risk of undertreating me. Without analysing the section of bowel and lymph nodes under the microscope they don't really know exactly what they are dealing with, and that could result in under treatment. They would rather over treat than under treat which I understand. My polyp was 18mm wide and 6cm roughly from the anal verge so I had a low anterior resection. I'm coping with the stoma ok, to be honest I was never worried about it weirdly?  I think my recovery is going well so far and I'm just trying my best to be a good patient - I hate not having my independence! 

    all the best for your results - let us know how you get on?

    betty xxx