Recently diagnosed endometrial cancer grade 1

Hi Su2

Welcome to the Womb group.

I am sorry to hear of your diagnosis of endometrial cancer. I remember it being a scary time. If you click on my name, my profile will come up, but I had my treatment in 2022. 

A grade 1 cancer is positive as it means it tends to be slower growing and less likely to spread. Having a CT scan as a next step is normal. They are trying to work out a provisional grade and stage of cancer. The grade is about the type of cells and the stage shows whereabouts the cancer is/if it has spread and this helps determine the best treatment.

For most ladies this is a total hysterectomy. Sometimes there can be other factors that can make surgery more risky and there are other ladies on here who have had slightly higher BMI's. Sometimes the mirena coil can be an option to effectively hold back any cancer to give time for the surgery to go ahead. With other factors like having PCOS losing weight is not easy and I would hope that after the MDT (once they also have the scan results- so provisional stage) then some sort of support would be put in place. 

I think perhaps it may be an idea to put together some sort of list of questions, ready for when you see the consultant. Perhaps along the lines of asking about the potential risks of surgery, what support they can offer to help with the weight loss (dietician referral perhaps), what would be a realistic and achievable amount to lose to enable the surgery to go ahead. Losing weight is not easy and especially at a stressful time like having a diagnosis. 

I remember feeling really anxious and not surprising you are feeling as you do. I remember at times feeling overwhelmed. Distracting your self with crafts sounds a good plan. 

Sometimes even if you have support around you, it can help to talk things through with someone else. We do have a Support Line available if you feel like talking things through would help. If you spoke with one of the nurses they may be able to offer some support with losing weight and would know about carbs and PCOS etc. 

I hope that the scan goes ok and that the MDT brings some clarification and support for what happens next. In the meantime, we are here if you need us.

Jane

Hi jane2511 

Thank you. That has helped to understand more and what I could be doing. 

My consultant is amazing and has already got the ball rolling on the MDT involvement. Just waiting to hear from them. But as you said this maybe after they have the result of the CT scan. 

I've not had much sleep again but hopefully this will get better. 

So glad I found this group very early on in my journey. My husband, family and friends are so supportive but being able to talk to people who have been through this or who are going through this is a gift. A silver lining in the storm. 

How are you? 

I remember having sleepless nights too. At my hospital the MDT meetings happen every Thursday am so if results were not back in time for one week then often they would be back the following week. For me the time from the initial diagnosis to getting the treatment plan felt hard as you feel a bit in limbo. Once I knew exactly what was going to happen and when, things did feel a bit better. 

I'm doing ok thank you. 2 years post treatment now. 

Glad you have support- it makes a huge difference. 

Hi, I was also diagnosed with grade 1 in July last year and had a Mirena coil fitted in October. Amazingly, when they did the biopsy at the same time, they found there was no spread in spite of the delay. Sometimes they can give you hormone treatment via the Mirena, as a kind of holding mechanism whilst you lose weight in advance of the surgery - but sometimes women have had good results with the coil and it's resolved the problem. I think there are many variables and some women have had success with the hormone method and not needed surgery, but it all depends on many factors. Weight loss, the thickness of the lining and control of blood glucose in those who have diabetes, as these are risk factors. Each person is an individual and my Consultant has told me that there are so many variables it's difficult to tell whether someone will respond to the hormone therapy or not.

My weight loss journey is going well, but not that quick! I have lost around one and a half stone but need to lose a lot more and will be doing the 12 week low calorie method soon as I am diabetic. I am hoping that I won't need the surgery but we will see where I am at the next check up. Sending good wishes to you at this difficult time.

Hi LolaBear and jane2511 

The orginal plan when I first saw my consultant was to have a look at what's going on and then fit the coil in at the same time.

However due to having a very large polyp in my womb and I guess what she saw when taking the biopsy she did not fit it in. 

She said I would need a different procedure to remove the polyp and she would contact me. 

Then I got the call last Tuesday to see her on Thursday when she told me the news. 

Since Thursday the waiting is starting to get more unbearable. Usually I complain that the weekend goes to fast yet last weekend seemed to last forever . 

I have my CT scan on Thursday afternoon and then have been told to have my phone at hand on Monday as my specialist nurse is hoping to call with the secondary test results from our local cancer centre of the biopsy from last week. 

Still not sleeping great either

X

Sorry to hear you are not sleeping well. It kind of goes with the territory. There are things you can do to help though. Tire yourself our during the day, take certain supplements like magnesium and milky drinks. What I often do is keep the TV on in the background quietly, just something familiar. Old films etc....and often fall asleep to that. There are also other things like sounds of the garden, birdsong, waterfalls and the sounds of the sea background noises are very soothing.

Take each day as it comes and try not to think about what might happen. Only deal with what you know now, as thinking about what might be is exhausting. Take care and best wishes.