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What to ask at results appointment?

Sunflowergirl123
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5 weeks ago I had surgery to remove a 14cm complex cyst from my ovary (along with most of the ovary). They also took biopsies of the omentum and pelvic fluid. At the same time I had a hysteroscopy which identified and removed a polyp in the womb and also biopsies taken of thickened womb lining. Prior to surgery they hadn't been able to determine whether or not the cyst was cancerous as there were some suspicious features but also some that were more reassuring.

I have now had an appointment come through for Monday with gynaecology oncology, which I think is for getting the results of all the biopsies etc. I'm assuming (hoping!) that this is labelled as this simply because everything up until now has been linked in with that until cancer is ruled out. I am a bit worried though that I have been given a face-to-face appointment, rather than a phone call/letter which I wonder if it may have been had all been ok. (It seems almost a waste of an appointment at their end if it is simply to say everything is fine if that makes sense)

Am trying to be positive and not panic just yet. What I'd like help with though is some advice on what sort of things I should be asking at the appointment, particularly if it is bad news. I want to be prepared and have things written down as I think if it is cancer I may well not be thinking clearly enough to ask what I perhaps need to. Any advice or experiences would be much appreciated. 

If it is cancerous, is it likely that the appointment will also discuss treatment etc, or would that be separate after the initial telling me appointment? 

Thanks in advance x 

  • Hello Sunflowergirl123

    I'm sorry to hear that you've recently had surgery and that you're now waiting for a results appointment next week. Understandably this will have been a worrying time for you. 

    Hopefully, at the appointment on Monday, the specialist will have all the information they need to make a proper diagnosis and they will be in a position to discuss the possible next steps with you. This isn't always possible, and although it can be frustrating, try to stay positive if the doctors are not able to answer all your questions when you see them. 

    It's a good idea to have any questions that you might want to ask written down and also to be able to jot down information during your appointment. I know lots of members here will agree that it's easy to forget some of what's said afterward. 

    If, and it is still an if at this point, you are given a cancer diagnosis next week, hopefully, you will be given contact information for a clinical nurse specialist. They will be a useful point of contact for any questions and queries that you may have. 

    In the meantime, if you'd like to chat things through with one of our nurses ahead of your appointment you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. I'm sure they will be happy to offer any advice and support they can as well as help you think about some of the questions you might want to ask. 

    Do keep in touch Sunflowergirl123 and let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline in reply to Moderator Jenn

    Hi,

    Don’t stress about this being a face to face appointment. I’ve been in a similar position twice over the years. Once it wasn’t cancer and once it was - both times I received the news face to face. It’s just best practice - whether the news is good or bad you’ll have lots of questions. 

    Everything Jen said makes sense, especially about writing questions and answers down.

    They should be able to give you the results of any biopsies and a preliminary diagnosis on Monday.

    Worst case, if it does turn out to be cancer, they may want to do further CT or MRI scans to check whether or not it has spread. The care plan will depend on whether such scans are needed and what the scans show. 

    Best case, the biopsies will be negative for cancer and they’ll give you a care plan for whatever else they’ve found. 

    Either way, you will have a better idea of what’s happening on Monday with far less uncertainty.

    Good luck!
    dave

  • Offline in reply to davek

    Thank you both for the replies.

    You've reassured me a little Dave that face-to-face doesn't necessarily mean bad news.

    Fingers crossed for tomorrow x

  • Offline in reply to Sunflowergirl123

    Hi again,

    You’ve just reminded me that there are several myths that really do need busting.
    Maybe I should write a separate post on this? Here’s my first draft …

    1) Bad news and good news
    - both need to be delivered face to face - never assume face to face means bad news, or a telephone appointment means bad news.

    2) If it was bad news, they’d have told me by now
    - sadly, good news and bad news often travel at the same speed. 
    As patients, we imagine the “system” would prioritise bad news. It rarely does, instead NHS staff are simply overwhelmed with the volume of results and reports. As a patient, I’ve had consultants tell me more than once “this result arrived last week, but I’ve only just had chance to read it”. As an NHS IT professional, I’ve heard pathology colleagues in histopathology complain that results, which would normally take up to ten days to receive, have taken over  six weeks simply because local capacity has been overwhelmed by demand. 

    3) chasing NHS staff will make things worse
    - NEVER hesitate to chase things up (within reason). Mistakes happen, messages don’t get passed on. Other people’s appointments get cancelled for various reasons.
    Don’t underestimate the impact NHS admin staff can have on your experience.
    Medical secretaries and appointment clerks have far more influence than you might imagine. “I wonder if you can help me? I’m worried sick about my appointment being so far away, I’d me more than happy to come in at short notice if there are any cancellations” might pay off.
    At one time, I was on first name terms with my oncologist’s medical secretary and the CT department’s appointment clerk.
    People join the NHS because they want to make a difference, give them the chance to feel that they’ve helped someone today. 


    4) Some interesting facts for context.
    in England alone:
    1) the NHS delivers 1.56 MILLION appointments per day (Oct 2023)
    2) 10,000 tests for cancer are carried out per day
    3) of these, only 6% (600 per day) result in a cancer diagnosis
    4) 85% of people diagnosed with cancer are alive after 5 years and just over 50% are alive after ten years (I find it hard to believe that I’m one of them as I was diagnosed at stage 4 in 2013). 

    Good luck for tomorrow - please let us know how you get on!
    Dave

  • Offline

    Hi Sunflowergirl l would take a list of questions and a pen and paper to write down what they say. Taking someone with you helps as you can talk about what’s been said,  as we all hear different things from a conversation. 

    It’s easy to hear something and switch off, before hearing everything from the consultant. 
    lve been through gynaecology oncology, l had complex ovarian cysts, the operation took 4 1/2 hours due to extensive adhesions. Fortunately my biopsies were benign, but it was 5 weeks before I was given the results! 
    Do take care l hope everything is fine 

    Susie

  • Offline in reply to Alfieisastar

    Thank you Dave and Alfie for your thoughtful messages.


    I wanted to give you an update on how it went today - not great news unfortunately. It has come back as being ovarian cancer - a less common type apparently, called granulosa cell cancer. 

    Have got some big decisions to make about the extent of surgery to have - the 'standard' treatment would be radical hysterectomy, omentum removal, lymph node removal etc. However, as I am only 32 and have no children, there is also the option of a less drastic approach of just taking the ovary - this carries risk though of it  an increased change of the cancer coming back/not totally got rid of. So lots to digest and think about! 

    Sunflowergirl x

  • Offline in reply to Sunflowergirl123

    I am so sorry that the news was so bad.
    Did they tell you what stage you’ve reached? 
    That’s a hard decision to have to make for anyone. 
    All I can add is please don’t rush into making a decision until you’ve had chance to ask lots of questions and are happy you’ve received all the answers.

    Good luck and best wishes
    Dave

  • Offline in reply to davek

    Thanks Dave. 

    They provisionally think it is Stage 1C . 

    Thanks for the advice - I was thinking, your previous message with a draft of myths would definitely be beneficial to others I'm sure if you did post it separately

    sfg x 

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