Endometrial cancer

Hi I’m 43 I was diagnosed with grade 1a then was told it was mutating and aggressive I had my op for a full hysterectomy on the 5th now waiting for the results to come back but they booked a emergency appointment for this Thursday so hopefully it will be the end of it the wait is the worst part 

on a plus side I was dreading the hysterectomy as even tho I’m only 43 I have quite a few health problems so I was dreading the pain of the hysterectomy but it wasn’t as bad as I thought I was told I would go in intensive care for first night and spend 4 days in hospital but I was out after I night the pain after the op first few days was really sore but then it was ok more than manageable 

emma

Hi Mogsmum

Welcome to the Womb group.

I am sorry to hear of your diagnosis and it is very understandable to feel a little worried and a little scared. Hopefully we can offer you some support.

It sounds like your op should happen soon. I had my pre op on a Friday afternoon and my surgery was on the following Monday am. In my experience once I had the actual diagnosis things moved quickly. It can feel a bit overwhelming. 

It sounds like yours is a grade 3 cancer. Mine was also an aggressive grade 3 cancer. I had my surgery and follow up treatment in 2022 and doing ok now. I think the thing to remember is although it is worrying to be diagnosed with one of the more aggressive types, although they can be more likely to have spread- it does not necessarily mean that it has. If you have not yet had an MRI and/or CT scan- that is normally the next step. This is how they get a provisional stage for the cancer and to find out where it is in the body. 

My cancer although a grade 3- was still found at an early stage. The difference in my experience with some of the lower grade cancers is that they tend to do some follow up treatment at an earlier stage. Once treatment was finished I had check ups every 12 weeks for 2 years. I am now on patient led follow up. 

My hysterectomy was done via keyhole and was straightforward. I recovered quickly from it. 1 night in hospital and very little discomfort/pain. 

If you think you may have an infection I would recommend you contacting your doctor as you may need some treatment. Eg; antibiotics. Some ladies find that they do have some discharge as part of their cancer and it may well be that your doctor can confirm if this is the case. It may be pink, watery or straw coloured. 

I remember feeling exhausted and overwhelmed when I had my diagnosis. Do give the Support Line a call if it would help to talk things over. They are there from 8am-8pm daily. Some people find that even when they have people around them offering support, it can feel easier sometimes to talk to someone more neutral. I know for me, I worried about upsetting family and friends. 

If there is anything you need or want to ask about, then please do so. We are here when you need us.

Jane

Hi thank you for your reply, I did have a ct scan, the oncolgy doctor couldn't tell us what stage it is, they will do that when they remove everything, then they do a biopsy on it all plus he might be testing the lymph nodes 

They have said I have a very large uterus plus I still have fibroids 

Hi

Sorry that you've found yourself here and that you have these worries. 

Like Jane, I found that each stage came around quite quickly with most appointments being made by telephone, so don't ignore calls just in case. 

There's a good thread about what to take to hospital when you go for your surgery, take a look as there's some good ideas there. 

community.macmillan.org.uk/.../2255011

Best wishes for your surgery & any treatment you may need.

H 

Hi

I had very similar symptoms you are having. My bleeding and headache were getting worse before the operation date. I was so scared the operation would be cancelled. Luckily it didn't. 

Try your best to look after yourself, eat well and sleep well before the operation. You need to build up your energy level now in order to have a good recovery from you upcoming operation.

Good luck with your operation.

Thank you  

Thank you for your help 

Dear Mogsmum, I was sorry to read your post and hear that you have been having a hard and scary time. I have only just had my hysterectomy (just over a week ago), and so not long ago was where you are now. Although my cancer is not aggressive according to the biopsy, I was very worried about what felt like a long wait, plus my spotting happened on a long holiday at the end of October and I did not get to the doctors until early December.
What really prompted me to answer your post was the bleeding that you say is concerning you. My bleeding really started after my first attempted hysteroscopy (had to have a second under GA). I thought it and the accompanying pain were normal at first, but did see a GP on Christmas Eve. He diagnosed a UTI, but unfortunately I did have an infection in my womb which was undiagnosed and ended up in hospital for a week at New Year. I had at times felt a bit nauseous and freezing cold, which must have been the infection. Also I realise now it was not just blood but some discharge although not smelly. If you have a temperature, chills, sweating definitely raise your concerns with your GP or gynaecologist, maybe tell them your fears anyway as they may be able to reassure you. I was told what happened to me was rare, so you’ll probably be alright, but best to get checked out. The bleeding did not stop until I had the hysterectomy last Monday - 2 1/2 months of it!!! It was really getting me down by the time of the operation. Had worried the infection had come back and phoned my cancer nurse for reassurance (it hadn’t). Then I worried it meant the cancer had spread, but no alteration to my operation and no lymph removed. 
I hope your pre op goes well and you are booked in for the operation soon after. I am finding the recovery easier than the anticipation. 

Thank you puffin

Just hoping the cancer hasn't spread, I was ok at first just started spotting in Dec then I had the the hystoscopy and I have had bleeding more and more backache 

Just want it over and done with xx

Hi 

Thank you for your reply, it is most helpful 

I am just fed up with what ever is happening down below 

I have been to the gynaecology at my local hospital for swaps, which was recommended to do by my Ongolgy Nurse 

That was Tuesday then told I will get my results within 3 to 5 days 

So at the moment still no better off and still got an offensive smell.

I will just be pleased when I have had a hysterectomy then at least it will get rid of the cancer inside my uterus which is also enlarged and I still have a fibroid 

Take care