Feels like it'll be forever before any information

I had my MRI on a Weds morning, and that was too late for my MDT on the Friday, so was expecting appt to discuss results the following Friday and was chasing for them to confirm the appt. I then had a call on the Monday where they had the MRI results which showed an issue with one of my lymph nodes and therefore wanted me to have a PET scan. ( I had MRI and chest X-ray first).

so the results can come back quicker than a week, but I found they wanted the results of all scans before having face to face to discuss next steps.

hope the results come back quickly for your Mum, we all know from our experiences that this period of testing and waiting for results is a difficult time. X

I had my CT scan mid December just after my initial diagnosis after surgery of 3B serous endometrial cancer.

My first appointment at our Cancer Centre was 8th January and I was told that the CT scan suggested lymph node involvement. They hadn’t been removed during surgery because they thought it was caught early.

The oncologist wanted a PET scan before the treatment plan could be finalised as they wanted to check that the cancer hadn’t reached the Para-Aortic lymph nodes, and that as done on 22nd January and then I had to wait so impatiently for the teams to design the treatment plan and my treatment eventually started on 17th February.

With regard to getting my scan results there was a gap of at least a couple of weeks before I got the results which did add to the stress and I was calling the CNS, the consultants secretary and the contact radiotherapy that we had been given as I was scared of the amount of time that had passed since my surgery.
Each of them took great pains to explain that the radiotherapy I was to have first needed to be carefully planned by physicists to ensure only the cancer was targeted and not nearby organs like the bladder or bowel and this was why there was a delay. I understood this but I was as still so stressed waiting. 

Im not sure that going privately for further scans will necessarily speed anything up and I’m not sure that they like to do too many CT scans close together either but perhaps someone else here can clarify that.

I do understand how torturous all the waiting is and you are asking all the same questions my own daughter asked when we got the shock. It’s great that you are supporting her so well I hope you both get an update as to their plan soon.

When they give you the results do they give you some indication of any potential spread or do they prefer to wait until the face to face appointment? 

I’m really hoping the results come sooner too. It feels like such a limbo period right now. 

Thank you, this is very helpful. Did they do any scans before the surgery or did they decide to go straight to surgery and then scans after? 

It’s good that they’re trying to find out as much information as possible before starting treatment as hopefully that means the treatment will be more tailored to her but the waiting does make it all feel even more anxiety inducing esp as your mind immediately goes to the worst case scenario. 

Working it out it doesn’t seem like private scans will make much of a difference so will have to just wait. I am trying to organise nice things for us to do while we wait to help make the time go faster. 

My tests were a bit odd, as biopsy only showed pre cancerous cells, womb lining 6.7mm  and they wouldn’t tell me that over the phone, got called at 8.50 am to go in for appt that day, as they had forgetter to set meeting up beforehand. They said despite results they still suspected cancer, hence I had MRI and X-ray. As they found an issue with one of my lymph nodes they had to tell me that over the phone as they wanted me to have PET/CT scan. They would only tell me results of that face to face. Both times I asked for results to be given over the phone, and had quite a discussion about this with my CNS before the results of the PET scan, but she said they would want to discuss everything at the MDT meeting, and I had a face to face about an hour after that ended. The face to face told me the spread and also they had a cancellation so was having op a few days later.

They do the scans before treatment, and for me it was very much about planning right treatment. As I said above the MRI showed something not right with a lymph node, which is why they got me having a PET scan. I haven’t seen others say they had a PET scan pre surgery.  However, as this didn’t light up any cancer cells in my lymph nodes..although there could have been some but too minuscule to show up, they decided not to touch/biopsy/remove any lymph nodes during surgery, and decided they would blitz them with radio afterwards.  They also used the info from scans to decide I needed abdominal hysterectomy.

Hi again Rlove95, and breathe! Bless you, it’s understandable to be feeling anxious, especially as the waiting is the worst part, but honestly, even with it likely being serous, 2-3 weeks isn’t going to make much difference. Yes serous/grade 3 is faster growing than a grade 1 or 2, but the word “aggressive” often isn’t helpful as it can suggest an image of a rapid rampant entity - and that image can play havoc with the mind quite unnecessarily.

By the way, just so you know, it’s MDT not MDM - it stands for Multi Disciplinary Team. I’d imagine that you’ll get the predicted staging when both the CT and MRI results are in so that they have a fuller picture. I got my predicted staging just 3 days after my MRI - my MDT met on a Friday morning, and my MRI happened on a Tuesday, and I got a phone call on the Thursday to say I was lucky and my results were back already, and that I should come in on the Friday for the results. The time it takes to receive and process the results really just depends on workload at the time. My appointment was at midday, the MDT meeting having finished at 11.30.

With your mum’s MRI being due next Weds 14th, and her MDT being on a Tuesday, you might find the results are back for the 21st and she may be called in for then or the next day for the predicted stage, maybe depending on whether they meet Tuesday morning or afternoon. Trying to go private wouldn’t gain any time for you and could be pointless as they would be unlikely to be synchronised with the current investigations. The waiting is awful and I do feel for you both but in just a couple of weeks’ time you should hopefully have the results and a plan, and possibly also an idea if when her op will be. 

I totally agree with you re lack of communication.  I don’t even have a number to call or any contact - just a letter sent through from a nurse in the gynae group saying I’d need a total hysterectomy.  An MRI had to be postponed due to me having a recent operation (idk why?!) and now having it the same day as your mum plus the CA(?) 125 blood test then….    I wish these Doctors would realise how important lack of communication weighs on their patients.  In my case, this has been going on since March - with a gallbladder op halfway through.  I literally have no-one to talk to apart from my GP (I mean on the medical professional side) and I feel it’s not acceptable.

very very best of luck for your dear mum.

I’m really sorry to hear that. I do feel like the way information is passed on can be very impersonal. I guess it’s the nature of how stretched the NHS is at the moment but it makes an already difficult moment even more difficult.

Hope things start moving forward for you quickly too, and best of luck to you too x