No diagnosis after second TURBT

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Hi all, I had to have a second TURBT after there wasn’t enough muscle in first biopsy to be sure about muscle invasion. Results from 2nd TURBT:

some tumour was still left - is that common? A bit concerned that they didn’t get all superficial tumour from a first resection!

Even though the whole point of the 2nd TURBT was to go deep enough to have sufficient muscle, no muscle in biopsy so inconclusive again! This must be extremely rare and makes me very concerned that the surgeon was not up to scratch! Also took more biopsies again from CIS when I did not agree to that and that wasn’t the purpose of the second TURBT.

feeling rather frustrated to not have a definitive diagnosis and therefore treatment plan yet and feel at the receiving end of poor quality treatment.

Has anyone experience this? I’m going to ask for a 2nd opinion and referral elsewhere if I can. Any advice from anyone who experienced the same/similar?

  • Hi  Second TURBTs are par for the course to try and clear anything they may have missed first time round. It should also give them a more accurate diagnosis in order to plan the treatment path. Have you been given a stage and grade. Best wishes.

    Best wishes to All,   rily.

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  • This is probably not all that common. However, I had a similar experience in 2017/18. The initial diagnosis after the flexible cystoscopy examination mentioned a 'small lesion.' My treatment plan after diagnosis in July 2017 was TURBT followed by bladder washout (BCG or similar). Pre-op assessment discovered a significant heart murmur which, together with blood loss, caused the TURBT to be cancelled on the day of the op. Palliative, moderate dose radiotherapy was used instead. Symptoms (heavy bleeding) returned in a few weeks and an emergency TURBT was performed. This reduced the bleeding to tolerable levels for a few months. Heavy bleeding returned and a second TURBT was performed which removed traces of the tumour which had not been caught by radiotherapy or the 1st TURBT. Insufficient material could be obtained during either TURBT for a conclusive diagnosis of the stage reached. This fact also puzzled a different specialist when discussing bladder removal options. It transpired that during both TURBTs visibility was extremely poor because of constant bleeding. Continuous water flushing during the process made it difficult to obtain sample material for path lab analysis. So, for clinical reasons, definitive diagnostic data could not be obtained. Maybe there are also perfectly valid clinical reasons for the lack of data in your case. I would recommend that you request a session with your specialists so that questions can be asked in a friendly manner. They are always very busy but in my experience are very open to explaining the reasons for a particular course of events. My outcome? Still here on palliative treatment 5.5 years after the last TURBT and living independently (= no medication, just a catheter to moan about!). No organisation is perfect but I hope that you can obtain satisfactory explanations before taking it further. Good luck and best wishes.    

  • Thanks a lot Ray, that is very helpful information. Also a lot of bleeding here so that may explain the issues. Will hopefully get to see the consultant after MDT this week.

  • Hi mikeyab68,I hope you get your treatment plan soon.I still had a considerable amount of tumour left following the 2nd TURBT.I was told there was a lot of bleeding which made it awkward.I had muscle invasive Squamous cell so went straight to urgent bladder removal.Best wishes Jane x