Grade 3 endometrial cancer

Yes. Good to know someone else said that, as everything I read before seemed to indicate wven stage 1, if the grade was 3 you'd need some follow up treatment after as well.

What I also didn't realise until I was told after my op, is that you can only have radiation in an area once, so if they do that now when I maybe dont need it and the cancer was to come back down the line, that my chance of having radiation as a treatment gone. They said they wanted to keep that option available just in case it was needed at some point, whuch does make sense.

Different patients, different consultants, different treatments. There are so many different variables. I feel for you all, but try not to run ahead and instead focus on the what IS not the what IF. Focus on what is known now, today - that’s more than enough to deal with. 

Hi Shirleydana 

I had a robotic radical hysterectomy with lymph node mapping. I can only relay my personal experience but it was very positive. I only spent one night in hospital, my incisions are neat and had dissolving stitches. They sent me on my way with pain killers and a mild laxative. Your bowels can protest a little but once I’d had a movement I was back to normal. I only took the pain meds for about 2 nights as I was quite comfortable on the whole. Everyone recovers at a different rate so be careful and listen to your body. Good luck with your surgery and recovery. They are a great bunch on this forum, there will always be someone on here to support you.

Thank you !! I am petrified of the surgery even though I am also excited to get it done 

then I am scared if the results change 

It’s so hard and I am an over thinker I just keep worrying about the whole thing and even though I am an upbeat person this is making me so down 

Shirleydana, when I had my laparoscopic hysterectomy op two years ago in January 2022, I wrote a diary thread, starting from my op day - it might help demystify things a bit for you. Here’s the link: community.macmillan.org.uk/.../hysterectomy-day-and-after---diary

Oh my that brought tears to my eyes yoir blog ! I feel better as I get scared at the recovery room but so I am glad you explained how you feel, I always worry about what is going on so now I can just think about what you said, you also made me smile ;) plus it must have been hard as was late at  night too ! Can I ask did your results all stay the same x 

Hi again Shirleydana, one thing that I kept reminding myself pre-op was that, for gynae cancer surgeons, this op is second nature to them and they do it umpteen times every week. I’d even be tempted to say they could do it with their eyes shut but that image may not reassure you!  Something else that helped me was was buying stuff for my overnight stay - a new dressing gown, a longer charger lead for my iPad and phone, snacks etc, - and making a list for packing. Regarding histology results, most women’s stay the same as predicted, or, in the minority cases when they do change, it’s usually just by one stage, eg stage 1a to 1b. Mine was rare in that it changed from stage 1a to stage 2 as, though it was still all contained in my uterus, cells were found on top of my cervix plus very rare pre-cancerous “stics” were found in my fallopian tubes. But not usual at all to go up two stages like I did. You have no control over this, and though it’s natural to be anxious and concerned, it’s fruitless and debilitating worrying about things we can’t control, so I’d suggest trying to find ways to distract yourself when these anxious thoughts rise up. I’d also recommend the Macmillan help line for support which is open 8am-8pm 7 days a week, and also your own CNS during office hours Monday to Friday, i know it’s hard but you will find a way through this. 

Thank you yes I’ve rang the help line and spoken to my nurses, it’s just with it being a grade 3 I am scared it’s gone further to lymph they doing sentinel node biopsy, what other treatment did you have ? I am so fixated on the results I am struggling but trying to distract and hold onto what the stage currently is  x 

I was grade 3 also and did not have any further treatment due to being positive for the  POLE mutation and I am not alone in that. I also had sentinel node biopsy and it didn't show any LVSI. Try to acknowledge that it is natural to feel anxious and then do something that will soothe you in the moment. 

Thank you it’s just with the surgeon saying that small nodes don’t always show up on the mri scan and that it would then take to stage 3 :( he said it’s still curative but just I am so terrified x