Low grade diagnosis, waiting on grading - not coping well

Not been in the same situation, but it seems they have given you a lot of information, before they know the full picture, my hospital was the opposite, they wouldn’t given me details until they knew everything.

my MRI showed a prominent but not enlarged lymph node, so I also had PET scan before my op, this showed few cells on ovary but nothing in lymph node. They used this (I didn’t know at time) to sort their plan of attack, which was hysterectomy but not touching any of the lymph nodes during op, and blast that dodgy lymph node afterwards with radio.

I know others here have had lymph nodes taken as part of op.

As I said I hadn’t appreciated pre op, the decision they had taken as an MDT to treat my own circumstances, this was explained post op when I saw oncologist, but it made perfect sense. In your case they are still waiting on tests ,,.MRI, and I think they are just thinking about best course of treatment for you individually, but won’t know until MRI is done.

i think it’s good news you have provisional date for op.

this stage of not knowing what’s what is really hard, but hopefully you will have MRI and results really soon, so you have actual details re planned treatment.

Hi 

I am sorry to hear that things are still needing clarification after your meeting with the consultant and nurse yesterday. 

It sounds like the MRI is the critical thing that will decide on the initial treatment. 

For most ladies where it is medically possible then a hysterectomy is the first line in treatment. However there are exceptions. Examples are where there are co existing medical conditions, a higher BMI or fertility considerations. 

Sometimes radiotherapy and/or chemo can be done before surgery. Sometimes hormonal treatment is an option. 

At the moment they believe it is a low grade cancer which is the best type to have. If it is confined to just the polyp then it would be at the earliest stage. If there is spread to the endometrium but only up to 50% of wall then it is 1a. If it has grown more than 50% then it is 1b. 

I do not know why the cervix involvement (making it a stage 2) would make a difference to surgery. However I have not come across anyone on here who has had a cervical biopsy for endometrial cancer. From my understanding a cervical biopsy would be more where there is a concern regarding cervical cancer. It maybe worth having a look on the cervical group.

For endometrial cancer the test is normally a endometrial biopsy and/or hysteroscopy. It may be that your hospital is just being thorough- and I would see this as a good thing. 

It is somewhat reassuring that your cervical biopsy was clear. 

The MRI is to look to see whether there is any spread from your womb. This helps determine treatment. 

They seem to have told you quite a lot of information at an early stage. What I would expect to happen now is that the MRI is done and it will take a few days for the results to come back. They will then go to the MDT meeting and all your results and scans will be discussed and a provisional treatment plan is decided on. Then they are likely to speak to you about what they advise but your wishes are also at the heart of it. 

I would try to focus now on what you do know rather than what may be happening in the future. 

So the consultant/nurse believe they have caught your cancer at a low grade and low stage. They believe that a hysterectomy will be curative. This would be normal and expected. The MRI is being done to rule out any spread. It seems like they are making you aware that treatment could be different if there is spread- however there is no evidence at the moment of spread. They have already booked the hysterectomy which also suggests they are hoping for the low grade and stage to be confirmed on the MRI. 

Your experience so far sounds very familiar to most ladies on here that I have come across. The only difference is that they took a cervical biopsy and as I said that could be seen as positive in that they are being really thorough. 

I know it is a worrying time. I remember going for my CT and waiting to hear. Once my scan results were back things did move quite quickly. Do give the Support Line a call if you need to. 

Jane

Hi Jane, I just wanted to say thank you so much for your very detailed and helpful response.

I've had an ectropion on my cervix for years, and my cervix was really red when I had the hysteroscopy so the consultant decided to take a biopsy from the reddest part - I've seen the letter which confirms that there is no evidence that it has spread into my cervix but I'm still dreading if it's spread elsewhere, when the MRI has taken place.

I've commented on another post but I'm just feeling quite alone and vulnerable at the moment - despite all of my family and friends being absolutely wonderful and supportive - I'm quite fresh out of a mentally abusive marriage (divorced last year) and I'm still struggling with PTSD from that, I'm waiting to go back to counselling to deal with that.  My ex has BPD and has discarded not just me, but our daughter and I'm terrified that she is going to end up parentless.

I can't tell you how much I appreciate your sound advice - just wish my stupid and usually rational brain would accept what everyone, including my medical team, are telling me