T4 when it was actually only T1

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Hi everyone

My husband is now 8 weeks post surgery for what we were told was T4 rectal cancer, has had his rectum removed and closed and a permanent stoma fitted.  We went back to the hospital today to see the consultant who did the surgery and were told the great news that no further treatment is needed. They have removed the tumour, lymph nodes and a section of the bowel.  The consultant then went on to tell us that when they sent what they had removed off for testing the results have come back as the tumour "only" being a T1 not the T4 we were told which led to the huge surgery that he has had done.  He said there is obviously a huge discrepancy between T4 and T1, that they would be looking in that and that, and did we understand what they were saying? He said that the operation for a T1 would have been considerably smaller and not as invasive, with no need for a stoma, but that there was no guarantee that it would not have led to what my husband had done anyway.  We have left the hospital a little confused to be honest, was he saying that whoever read the scans read them that badly that my husband had a much worse operation and a permanent stoma fitted when he didn't need to? That's what it seemed like to us. What he has been through has been horrific and progress after the operation has been slow, with infections, wounds not healing and he still cant yet sit without a special cushion. The wound underneath still has not fully healed and he is still leaking fluid. Fully aware that it could have been worse if it had been the other way round but I wondered if anyone else had experience anything like this?

  • Wow, Mrs. W., what a head-spinning development!

    Yeah, he *could* have ended up right where he is, but that's a still a huge assumption.

    I'm stricken for both of you. His healing is the most important thing, but I'd certainly be following up with this. I would want some very good and very complete and very comprehensive reasons for this situation.

    Just for starters.

    Suz

  • Oh my.  I have never experienced anything like this, ever, and I don't know anyone who has either.  The is a massive mistake and obviously life-changing for your husband.  I think that is a very big 'if' the consultant has thrown in, especially with regard to your husband may have needed surgery anyway.  A T1 tumour with no lymph node involvement is normally successfully eradicated by the standard treatment of chemo/radiotherapy, if not by excision with very clear margins.  There are not many that I know of with a tumour that small who go on to have later spread and need the major surgery.

    The big question is what would be (some sort of) resolution for him.  This is obviously something that only he and you can decide, weighing up what long term effects this has all had on you both.  As ridetbred says, I would want a complete explanation as to how and why this considerable error was perpetuated throughout multiple scans and examinations.  I think it would be very useful for you to have impartial advice, ie NOT from the hospital.

    I am really so sorry that this has happened to him, it is the sort of scenario one reads about in the news, but as far as I know a first for this forum.  I am hoping very much that his recovery improves and your life together gets back on track.

    Gentle healing hugs to him (and you).  Please keep us updated.

    Irene xx  

  • Morning … my heart goes out to you… my husband and I are just at the beginning of this journey… I can’t imagine how you guys are feeling.  Did your husband have radiation or chemotherapy?  We got told about the cancer by letter … then an appointment with the surgeon… when I ask him the stage his reply was we won’t know exactly until it’s out.  Surgery was always mentioned… so I asked the type definitely APR.  Even with radiation/ chemo first there was no questions on the type … I think it’s got to do with position and reoccurrence.Then the appointment was the oncologist he staged the tumour…. Show us some  pictures… but we keep hearing we will know more when it’s out. We are in the uk and Surgery seems to be the answer. Hubby only 41 and very active the surgery scares us the most. 

     It’s hard for us to believe this dramatic surgery is needed…as hubby feels fine.  So I can’t imagine your thoughts right now.  I hope you get some answers . Big hugs  Hugging 

  • First Mrs. Washington, I'm so very sorry to hear that this has happened to you both.

    This type of major surgery will have lifelong implications for you both, not to mention the immediate pain and distress.

    I would think this is medical malpractice and I would urge you to retain a lawyer immediately. This is why doctors have malpractice insurance.  There are time limits on bringing suit on medical issues. These time limits vary in every country. The surgical team can explain all they like about WHAT happened, the issue is the HOW.

    For reference, I was diagnosed in 2012 with T2 anal cancer and treated with chemotherapy and radiation. No lymph node removal, no surgery, no stoma.

    Wishing your husband a successful recovery, and best wishes to you both on a satisfactory outcome.

    Robin
  • Hi everyone - sorry I realised I have missed out some details in my post. In March we were about the T4 tumour and were told that the only way out of this was the operation to  remove the tumour, lymph nodes and a section of the bowel with the permanent stoma fitted. They told us that no chemo or radiation was possible at this stage and that the operation was the only way forward, but that some chemo/radiation may be needed after the operation if they didn't get everything out. 

    My husband is a very positive person on the whole but this last few months has dragged him down, as it would anyone.  He has been very very emotional since the operation, and on numerous times has said he cant carry on anymore which is upsetting to hear and see.  His thoughts on yesterdays news are at the moment well its done now and I'm ok, whether the news of what they told us hasn't sank in properly i don't know.

    I genuinely don't know what to do about it, no apology or any form of compensation can reverse what's been done. Do we just get on with our lives now as best we can.

  • Thanks Jane, my hubby was 50 5 days before the op. No chemo or radiation has been needed as we were told that the only solution was the op. We are in the UK too. My hubby also felt fine, the only thing that was giving him grief  was what they first thought was piles. So it came a huge shock to us that it was cancer and that this was all necessary,.

  • Snap.. he was treated for piles too.  I hope you get the answers for your piece of mind.  It so cruel. Big hugs Hugging 

  • Thank you, I think we are going to take some time to have a think about what's happened, we are back to see the consultant again in September

  • Mrs Washington

    I have looked up on the NHI's own website for advice

    https://resolution.nhs.uk/services/claims-management/advice-for-claimants/

    You may want to have a look, even if you decide to do nothing, or not do anything right now you can see what information you need IF you decide to take this further.

    You and your husband must be absolutely shell-shocked right now - please don't make any hasty decisions (especially to step back).

    Irene xxx

  • Oh my goodness  this is a pretty major error in diagnosing your poor husband!!

    I was diagnosed stage 1 Squamous Cell Carcinoma anal cancer & was given the option of a local resection as first line treatment, I had the surgery which although painful straight after I was healed & back to normal within 3 weeks. Unfortunately I only had a 1mm clear margin on a tiny portion of my tumour which then lead to 23 days of chemoradiotherapy, I was 90% recovered from this & back to work in 5 weeks after my last treatment. I’m fully recovered & have been discharged from surveillance & except for minor stenosis & a little skin sensitivity everything is back to normal. 

    The surgery your poor husband has been through not only has a really long recovery time it’s life changing surgery! As Suz has said his consultant saying he ‘could’ have still required the APR surgery is a huge assumption & in my humble opinion pretty doubtful! 

    I’m so very sorry that this horrific mistake has lead your husband down this path & that you’re having to experience him going through the trauma of such extensive surgery unnecessarily, personally I would be taking this further & getting some kind of legal advice although that is a decision that only the two of you together can decide upon. 

    I hope your husbands recovery improves soon & you at the very least receive a full & comprehensive explanation into how this has been allowed to happen & an apology! 

    Sending lots of healing thoughts your way & please let us know how things progress. 

    Nicola