How to cope with waiting

Hi Hayley, bless you - I do feel for you as the waiting is the worst part. As you’ve been told you’re on the list for the MDT this Thursday, that means that they expect your results will be back by then. I’d suggest calling your CNS (Cancer Nurse Specialist) and asking if you could possibly be told your results on Thursday by your CNS over the phone as you’re so worried, so that you’re not left hanging till the 30th, and can just meet your surgeon then. 

For what it’s worth, my chest X ray result was back the day after I had it done, and my CNS gave me the result of that over the phone. 

Hi HayleyD

I remember it well. It is a really tough time.

It sounds like the appointment has been made for the 3rd to ensure that all the results are back and can be discussed at the MDT. I know for me with my post op results they expected them to come back in time for an MDT and they were delayed for another week. 

Why not give the hospital a call and ask if you can have one of the cancer nurse specialists call you after the MDT this week and give you any available results over the phone. You can say that you are struggling waiting for them and if there is anything they can tell you while you are waiting for the appointment on the 3rd- it would really help. 

It is naturally hard to  focus on much else but trying to keep some normal routines helped me. And talking to those around me. We also have the Macmillan Support Line available if it would help to talk to someone else. 

For most ladies the first line treatment is likely to be a hysterectomy- where it is medically possible and this is often done via keyhole. This is normally done as soon as it can be but will depend on things like how busy the hospital is. I remember being at the stage you are at now and it can feel like you are in limbo and everything is on hold- however once I did get my consultant appointment things moved quickly. I had my pre op tests done straight after on a Friday pm and my surgery was on the Monday. So hopefully on the 3rd you may well find that they can get things moving quickly. 

We are here if you need us.

Jane

When I had my chest X-ray on the 12th May the radiologist said the chest X-ray was on the system waiting for the Doctor to look at. So I went back to the gynaecology department and mentioned this but they said that a Doctor had to look at it before they told me the results. I didnt have my MRI until the 14th May. I just feel like I’m not being told anything.

Do you have the phone number for your CNS? The gynae department is only likely to give out generalised info. Your CNS is there to support you personally and mine had access to all my records and notes. I actually phoned her 2-3 times a week from diagnosis to op for support when I was feeling anxious as well as with questions about results. She was sometimes able to expedite appointments for me too! 

It is normal not to be given any results before the doctor who ordered the tests has reviewed it. Sometimes the doctors prefer to give results themselves. Sometimes they are happy for other clinical staff to do it. There can also be quite a variation due to how busy the hospital is. 

My ultrasound result came back within hours. My CT scan took around a week. My biopsy results were around a week. My results were given by a CNS as arranged. My appointment with consultant was a couple of weeks later. My post op results took 3 1/2 weeks. 

The best person to contact is your CNS. Alternatively an option may be to contact your GP to see if anything has gone there. However they may refer you back to oncology. My GP was able to speed things up by contacting the hospital directly through an internal system but was not able to tell me anything specifically themselves. 

With both the chest xray and MRI being done only within the last week, it may well be that the consultant has not yet had a chance to review all the results. With the MRI only being on Thursday it may still be early days. I know for my consultant he did surgery on certain days and clinics on others and fitted everything else around it. 

I would think that if you are able to speak to your CNS it may well be that you can be given a brief outline of results over the phone hopefully by the end of the week or early next week. 

Jane