Feeling like consultant isn't bothered

I had some pains that were being investigated as possible kidney stones.  An ultrasound was ordered but in the meantime I broke a couple of ribs and was in agony.  When the ultrasound was done they couldn't press hard enough to tell 100% whether a lesion on my was Renal Cell carcinoma (RCC).  The radiographer wrote to my GP saying she thought it looked like a 2.6 cm RCC but explained she couldn't be sure.  

I had an appointment with a consultant urologist a month later, he also said he couldn't be absolutely sure but he'd put the prognosis as 50/50 RCC/cyst. He the organised a CT to investigate further.  However, he knew at the time I had other things worrying me that made me wonder if it had metastasised. He said no way, it was tiny and that it wouldn't do that till it got to at least 3 cm and more likely not till it reached 4 cm. 

As part of the conversation he told me because I have Factor V Leiden and had previously had clots on the lungs twice many years ago before I went on anticoagulants, that it would be too dangerous to operate on me anyway and he wouldn't consider it until a growth reached a point that it was likely to metastasise. He did say that if it was cancer he'd have it measured at 6 months, or a year to see how fast it was growing, but then said said they only grow at the rate of 0.3 cm a year and so, if it was cancer I had nearly 5 years left before he needed to take that decision.

I had the CT scan and the notices all around the waiting room said 'We believe in giving results in 1 to 2 weeks as we know how stressful it is to wait for this type of result. If you don't hear in that time ring your consultant secretary.'

So after 2 weeks I'd not heard so I called, she checked and said it hadn't been read yet and that was normal, it takes between 3 to 4 weeks then we call you in during the following week. She said to call back if I hadn't heard in a further 2 weeks. 

In the meantime I checked the NHS app because sometimes appointments come up on there before you get them in the post. It stated I was on a waiting list, waiting for treatment to start in April. But I don't know what the treatment is for. 

So after a further week, I call again and speak to the consultant secretary, she confirmed that my results were now on the system and that she would flash them in front of the consultant and I would hear from them very quickly now.

Another week passes and I call again, this time I speak to someone else, she confirms the results are on the system, she says the consultant's secretary will flash them in front of him and that he will write to me and explain the results next week, because she said "he's very good like that, very proactive".   

Now I've been left wondering, if the result is able to be communicated to me by letter, is it that it's not cancer at all, or if is cancer, is the delay because he doesn't want to tell me the result, because as he put in the letter he sent to my GP,  he knew I was anxious. 

Is he thinking I'm better off not knowing because he is not going to do anything about it, even if it is cancer. 

  • Hi Sharyllyn54 and welcome, I am sorry you are frustrated and anxious having to wait so long for results, sadly delays are quite common. I can't imagine your consultant wouldn't withhold a cancer diagnosis from anybody if treatment was time sensitive, or because of your anxiety, because we all get anxious waiting for a possible cancer diagnosis. I do not know your diagnosis only that if the CT scan showed something that needed a quick response you would have been told long before now, take care.

    Eddie

  • Sharilyn,

    I’m sorry that you are being messed about like this.

    The chances are that, for whatever reason, he still hasn’t had chance to review your results. If he had, good news or bad, these would have been communicated with you or your GP by now. I’m saying this out of experience, my own oncologists have been known not to review my results until I’m sat in the office in front of them. This “if there was anything wrong, you’d have been told by now” idea is wishful thinking. Mistakes happen - especially by over-worked clinicians.

    In your position I’d ring on Monday and say that you’re reluctantly considering raising a formal complaint about the delay and the impact it is having on your mental wellbeing unless your results are shared with you very soon. No-one wants the hassle of responding to a formal complaint.

    Good luck!
    Dave