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Ready to go for surgery and there's a problem

Wotserface
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I was first on the list for 8.30 on the 18th May. Had bloods and obs done, got gown, paper knickers and stockings on. I saw the anaesthetist who went through everything, then the surgeon came 10 minutes before I was due to have my partial nephrectomy  and said there was a problem.

First he said the tumour at 1cm was too small to find, then he said it had to be accessed through the back, but only 3 hospitals in the UK did that kind of surgery and that wasn't one of them. Then he asked me if anyone had given me the option of RFA , and I said no I was only given 2 options, wait 6 months for another scan or surgery. Due to the fact that the tumour had grown in 3 months and it had taken 2 months to get my results, I'd opted for surgery.

 He then went off to see someone in radiology, came back and said that they all thought due to my age, and the tumour risking me losing the kidney, and that I had a partial left kidney and other health problems, that radiation was better. We asked about a biopsy and he said I'll have one at the same time as the radiation, they don't do them. Which we didn't understand why not.

Then he was saying they don't know what happened to the cyst, which apparently was 5cm. He said it was impossible to have burst it during my gallbladder surgery in November, because it was at the back of the kidney. He said they hadn't seen that before. I mentioned the genetic testing I'd been told I had to have and he said I don't need it and shouldn't have been told that. He said I would have to wait another 2-4 weeks for the radiation treatment and sent me home. Just so angry about it all. Why hadn't this all been discussed and sorted before I got to surgery? The rumour is next to the major blood vessel in my kidney, and the overall impression is that it's too near. I haven't been scanned again so they are going on the size of the rumour 3 months ago, given that it grew in 3 months, how big is it now? As the hospital apparently only does 1 RFA a month, how long till mine I'd done? In the meantime the rumour could be growing and no one has thought to send me for another scan.

I can't even feel relieved that the RFA means saving my kidney because I feel like I'm living with a time bomb, that isn't being monitored properly, in fact I haven't been monitored properly since I had cancer in my left kidney.

 

  • Hello Wotserface, 

    It sounds like this has been an incredibly stressful and frustrating time for you and it's understandable that you're angry about everything at the moment. 

    I wonder if you might find it helpful to have a talk to one of our team of nurses? They may be able to answer some of your questions and help you to work out what you want to ask/clarify at your next appointment, or sooner if needs be. 

    They are available Monday to Fridya 9am to 5pm on 0808 800 4040 which is free to call from a UK landline and most mobile networks. 

    Thinking of you and sending best wishes, 

    Jenn
    Cancer Chat moderator

  • Offline

    Hi Wotserface,

    That sounds like a very frustrating experience - to put it mildly. I guess the surgeon who was actually about to do the op on the day realised there was a potentially better option for you and rather than just carry on had the difficult job of telling you. Do we assume that the disappearing cyst is a piece of good news? Is it possible that they might redirect you to another centre for the RFA so you don't have an unecessary wait.

    All round a very difficult time - keep us posted

    best regards

     

    sueps

  • Offline in reply to sueps

    Thank you for your replies they are appreciated. I have received a letter to see the surgeon on June 9 and he stated in the letter I need an MRI. On Tuesday at 5.45pm I received a phone call about an appointment the next morning to see the Surgeon who I had not seen but was under. Of course at such short notice I was unable to attend, I have to be escorted due to mobility and sight problems. Apparently I should have received a letter and also an MRI appointment. I had neither.

    I then received a phone call to tell me I was to go to  Western Park hospital for my MRI scan at 4.20pm, because it HAD to be done ready for my appointment on June 9, with the Urology surgeon and the Radiologist, who would be discussing RFA with me.

    Yet again Im sat in the gown ready to go, when Im informed there is a problem, I can't be scanned because they'd not been notified I had a VP shunt nor the make and model of the clave. If they hadn't been so thorough I would have been looking at surgery to reset my shunt too. My husband was practically spitting feathers with fury.

    The radiologist was lovely and apologetic and she was only doing her job to the letter of their protocols, I just wish everyone else did too. She said they would arrange for my neurological notes to be sent to them, as there was nothing documented in my Urology notes. So far I've heard nothing about an MRI scan before Tuesday, and I'll be surprised if I even have one. It's getting beyond ridiculous the lack of communication and lack of duty of care that we are experiencing . I have tried to be a patient patient, but it's getting to be very hard when I see how worried my family are

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