Good morning everyone. I've just joined. Got a shock diagnosis end of Oct for endometrial cancer. Was last thing I thought it was.

Hello Pixie1

Welcome to the Online Community. I am sorry to hear that you have had a diagnosis of endometrial cancer and I understand what a worrying time it is. I had endometrial cancer in 2022 and it was treated with surgery, chemo and radiotherapy. If you click on my name my profile will come up.

I will pop a link here to some information that you might find helpful. But if you have any other questions please do ask.

Womb cancer booklet | Macmillan Cancer Support

Womb cancer is diagnosed in something called stages and grades. Some of this is known at the biopsy. The CT is normal to have and its checking on where the initial cancer is and whether there is any spread to any where else. After surgery there will also be some pathology that will come back which will have a more thorough look. Sometimes stages and grades can change a bit.

The good news is that if the consultant feels that you are at stage 1a- it means it is at a very early stage and likely to be contained within your womb. Stage 1a means it is in the lining of your womb and less than 50% through to the muscle layer. Stage 1b is what I had which means it has gone more than 50% into the muscle part. Stage 2 is when it has reached the cervix. Stage 3 is where there has been some spread outside the womb in the pelvic area. Stage 4 is where it has gone further afield. 

With grades- Grade 1 is cells that are not much difference to normal cells. In grade 2 the cancer cells are a little more different. In grade 3 (what I had) the cells can look very different and have the potential to be more aggressive. Put simply they are more likely to spread further afield if not treated promptly. But yours is still at the earliest stage. Hopefully your CT will confirm this.

It is normal to have lots of questions and emailing your CNS (cancer nurse specialist) is a good idea. However if you feel it would help you could always give the Support Line a call (number is at the bottom) and speak to one of the nurses on there. Its good that you have got the pre op out of the way and I hope you do not have to wait too long for your op.

Having surgery is always a worry but I found the hysterectomy pretty straightforward. I was well looked after and had very little pain. I recovered well. I will pop a link here with some more details about the surgery.

Hysterectomy for womb cancer | Macmillan Cancer Support

With my hysterectomy (key hole) I was given an epidural plus general anaesthetic. The epidural is basically an injection into your lower back to numb you from the waist down. They give it so it wears off a while after your op to keep you comfortable. Then I had a general anaesthetic.  When I woke up I felt really thirsty and a bit woozy but there was no pain. I was able to stand up within a couple of hours. I had some naproxen in the evening and after that it was just paracetamol for a couple of days. I was home the next day. Its a case of taking it easy and not lifting for a few weeks. After the surgery (for me it was 3 1/2 weeks - I had my post op pathology back and this will tell them whether you may need some further treatment and if so what type. 

I hope this helps a bit. If you have any further questions please let us know - there are a lot of lovely ladies on here who have been through a similar experience and we all remember how it was to get that diagnosis. And please do pick up the phone and call the Support Line if you feel that talking things through would help.

Take care

Jane

Thank you so much for the reply and info. It has been very useful and has helped with concerns. It's good to hear others experiences post op. 

Thanks again 

Hi Pixie1

When I had my hysterectomy they gave me the epidural after they anaesthetised me  so I didn’t feel it going in. After the operation I had a little buzzer to press for pain relief for a couple of days and then paracetamol. I had codeine to take when I got home but I only needed it a few times. Hope all goes well with your op! 

Linda

Thank you Linda 

Hello Pixie1 

I've not much to add to jane2511 great reply. Jyst a couple of things:

I was told from biopsy I had Grade 1b and Stage 2. 

After surgery, total hysterectomy via robotic surgery, I was offered epidural but declined. After the op I felt pretty good with no epidural, just general anaesthetic. I think I was given a good dose of some strong painkiller in theatre as I was very comfortable.. I had IV paracetamol for overnight. Pain was much easier than I thought. I went home with codeine but didn't use it after a couple of days.

My final grading was still 1b but downgraded to stage 1 which was lovely news. I need pelvic radiotherapy as I had a bit of LVSI ( some cancer cells were noted in the lymph/blood vessels leaving the womb). 

It is a massive shock being told you have cancer. I have read up and informed myself as much as possible. I like to know what's going on/what to expect. But for some people that doesn't work. 

We are all different and unique and fabulous  

*BEFORE surgery I was offered epidural, but declined.

Hi Pixie1, welcome to the group and this emotional roller coaster ride! I had a hysterectomy in January 2022 under general anaesthetic. I had heard an epidural mentioned to a hysterectomy patient when I was in waiting for my hysteroscopy and so I asked my consultant and he said they were usually only offered to people they thought might need one. He didn’t think I’d need one and I didn’t. When I came round after my op under GA my only discomfort was from the catheter which was still in. I didn’t want opiates so I opted for paracetamol post op every 4 hours, but after 6am the next day when my catheter was removed, I didn’t need any pain relief at all. When I got home I took two overnight for the first two nights just in case, but I was fine. Went for a gentle 5 min walk as soon as I got home and did the same twice a day for the next 3 days and then gradually increased. If you can, gently getting moving is the best way to recover.

Thank you