How do you do the "waiting game"?

Yesterday when I heard the news, after my biopsy was taken, that on a scale of 1-5 they gave me a 4 for a probability that I had cancer I was really pragmatic and wanted to discuss all the possible options with the breast cancer nurse.  Today I just feel physically sick and on the brink of having a melt down.  

What hints do you have to distract yourself.  I have a 2-3 week wait for confirmation of the results.

Any advice appreciated.

Thank you.

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  • Hi,

    Telling you that was very unprofessional, you are well within your rights to make a formal complaint. I’m pretty sure it wasn’t a doctor who talked such nonsense.

    The vast majority of cancer test referrals end in a negative result. That’s because “query cancer?” referrals are made if the referring clinician thinks there is as little as a 5% chance that the presenting symptoms may indicate cancer. 

    There is literally no way of knowing a biopsy is cancerous without testing it and examining it under a powerful microscope. Anyone who tells you otherwise risks being struck off no matter how “experienced” they think they are.

    Waiting for results is stressful enough without that sort of uninfomed nonsense echoing around your head. 

    I agree with everyone else that dogs are a great distraction.

    Good luck!

    Dave

  • Dave, there is a scoring system for mammograms and ultrasounds in the UK, the 5 point breast imaging scoring system, Europe and the USA have a slightly different system - BIRADS.

  • I understand that, but sharing those scores with a patient without fully explaining that these are levels of suspicion of malignancy which aren’t 100% reliable/accurate and that a diagnosis can’t be confirmed without a biopsy is bad practice and can raise anxiety levels unnecessarily. 
    Over the years, we’ve had many complaints on here about the impact of false negatives and of false positives prematurely shared which were overturned when the biopsy results were eventually received. 
    I had a different type of cancer but the consultants I was seeing were very careful to use wording like “your scan results make it seem likely that you have a malignant tumour but we won’t know for sure either way until the biopsy results are back. This gave me the opportunity to prepare psychologically for any bad news, without prematurely losing hope - or feeling I’d been misled if the news was good (which it had been ten years earlier when there was a query about a different type of cancer). 

  • Oh David, she did say that they couldn't be 100% sure until the biopsy results were back.  She did ask whether I was someone who wanted to know everything or not, I said I was.  Knowing and research helps me feel slightly in control of a uncontrollable situation.  I expect she would have approached things entirely differently if someone said they just needed the minimal amount of information.  Thanks for taking the time to answer.  I'm sorry my previous message might have seemed a little curt, pressed reply accidentally.  Stilling counting down the days until the results, 1 week ends tomorrow, so one or two more weeks to wait.  That really is the kicker, the unknown and the limbo.  

  • No worries. 
    Whatever patients say they want, clinicians need to be super-cautious as there have been cases of suicide taking place before a negative biopsy result has been received following a gloomy initial assessment. 
    Like you, I wanted every bit of information I could glean. It was about two weeks from biopsy to consultation. That was probably the most stressful fortnight of my life ..: despite me working in a warzone more than once!
    My wife was even more badly affected mentally and emotionally than I was - again it was the lack of control that was the kicker.

  • Dave, I hope you are all clear now.  We have been on this path before, only I was the partner that time.  9 years ago my OH was diagnosed with Non Hodgkins Lymphoma and it really is difficult being the partner.  Fortunately he has been in remission since he received treatment so all good.

    We all deal with these situations differently. Onwards and upwards.

  • By coincidence, I received my annual CT results on Friday - no change which is fantastic, especially as I was given an awful prognosis back in 2013. 

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