My case has been referred back to MDT

Hello 

Welcome to the Womb group.

I am sorry to hear of your recent diagnosis. 

It sounds like the MDT need to have another look to decide the best possible treatment for you. The hysterectomy that has been mentioned is normally the first line treatment where it is medically possible. It sounds like they want to be doubly sure of the stage and grade and are just taking another look. It may well be to do with the possible lymph node removal and what they would gain from this. 

Try not to be too concerned. It is far better that they have a clear picture of what is going on before the surgery. I wonder whether there may also be an element of staff being on annual leave at its the summer. I know some of my results were delayed due to it being Easter and staff were off. 

Wednesday will soon come round and in the meantime if you want to talk things through, then do give the Support Line a call. 

Jane

Hi Anxiousa32114

Welcome to this group, and the rollercoaster journey, which seems unfortunately to have an added dimension for you.

Im not surprised you are anxious. It’s bad enough waiting after all these tests, but to then be told one thing, and then this getting changed must be really hard, and then be told this happens all the time - this would have really set me off. When I had my diagnosis, they ( the CNSs ) were being very careful not to say anything, until all tests/scans had been done, and it was then a consultant that told me, not a nurse. For me, the nurses were very careful not to say things, until consultants had, this was true even post op re follow up treatment.

I didn’t appreciate at the time (perhaps I should have)  how the MDT worked together to discuss and agree what happened in surgery and treatment afterwards. I sort of thought the surgeon makes the decision re surgery  and then the oncologists take over afterwards if further treatment required. MDT meeting for continuity/oversight. For me, I had a dodgy lymph node which showed up on MRI, but PET scan didn’t highlight anything cancer cells there. As a result my oncologist agreed with surgeon in MDT pre op, that my lymph nodes wouldn’t be touched during op, but he would zap afterwards with radiotherapy. I didn’t know this until post op, but the explanation made sense.

From what you have said, surgeon wants another discussion and this must be to make sure your proposed course of treatment is right for you, although it must be very difficult for you at the moment. Hopefully this won’t cause a delay/too much of a delay to getting hysterectomy.

Hopefully you will hear from them on Weds. Thinking of you.

Hi Jane.  Thanks for your reply.  I am fortunate to have reached the age of 70 without serious illness in my life and this diagnosis has knocked me for six. I think I pressed the panic button and imagined all kinds of scenarios, which is the norm for me at the moment.  I’ll think positive thoughts until Wednesday.  Thanks again.   

Hi Waidh.  Thanks for your reply which is much appreciated.  I will hopefully hear from them on Wednesday afternoon/Thursday morning and take another step forward.  Thanks again.

Hi, did your Nurse even mention the stage or grade of your cancer? It all seems light on detail to me, so I would pursue answers because you should be on board with it all. I know some people don't want detail but mostly,  women appreciate knowing where they stand. Take things a day at a time but try to get information which may at least make you feel involved with decisions...

Hi LolaBear.   Nothing was mentioned about stage or grade.  I will speak to the nurse again to get more information if possible.  Thank you for your reply.

Hi All.  An update on my journey.  I have G2 endometrial adenocarcinoma.  I’m told it is a “common form”, is not genetic and not so aggressive, more age related.  I am seeing the surgeon next Wednesday to discuss the procedure and have a pre-assessment.  The positive (?) I have taken is that the procedure will take place at my local hospital which is 10 minutes away and not at a hospital 1 hour away.  Onwards and upwards !

I am sorry to hear that you have had a diagnosis but it sounds much better to be able to have your treatment done at your local hospital. 

A grade 2 cancer is right in the middle between the grade 3 aggressive type and the more slow growing grade 1. Adenocarcinoma is a more common type 1 endometrial cancer. 

Have you been given the provisional stage? 

It is the post op grade and stage that is important is determining whether or not any further treatment is needed. For early stage and grade the surgery alone may be enough. 

My hysterectomy was back in 2022 and it wasn't as bad as I was expecting. I was in hospital 1 night and had very little pain. I recovered quickly. 

Good Luck for next Wednesday and hopefully the surgery can be done soon.

In the meantime if there is anything you need, then you know where we are.

Jane

Hi jane2511.  No I haven’t been given a provisional stage.  My lymph nodes are inflamed but the reason isn’t clear.  I’m told the procedure could be done by keyhole surgery so I’m hopeful that will be the case as I understand the recovery rate is quicker.  Thanks for your reply and support.

Hi

Good to hear you now have the start of plans, and good that you can have this at your local hospital. Hope meeting with surgeon goes well, and hopefully you will have a date for op soon.