Newly diagnosed grade 3 endometrial cancer

Just wanted to say, not asking anyone to tell.me what to do,  but  would appreciate anyone sharing their experience after having either procedure.  I understand we are a different but just finding this all very hard atm. Thank you .

Hello and welcome to this group.  If you look at my profile you will see that I was also diagnosed with Grade 3 cancer and had a radical hysterectomy in December 2021 which also included the procedure to remove pelvic lymph nodes.  If you are having keyhole surgery you will read that many of us had little pain and recovered fairly quickly.  My post op histology showed that only two lymph nodes had been collected during the surgery and this and having high grade serous made my decision of have chemotherapy easier.  Good luck with your journey-you will get a lot of support from the ladies here.  XXX 

Thank you for your reply.  I will definitely read your profile later as unable to atm.  I have a few more questions/ queries you may be able to help with. It's such a huge thing to take in with lots of ifs & buts. I'm a very practical person who works with facts in my head & having ifs & buts messes with it for sure. Xx

Hi toilet, have you been given this choice by your consultant or is this just something you’re thinking about?

Hi there

I too have grade 3 and made the decision to have lymph nodes removed. 

I spoke to the CNS about my fears if lymphodema following removal of nodes so she  asked surgeon on my behalf of what my chances were, his response was that I should be OK with minimal risk for lymphodema due to my being in general excellent health and currently not on any medication which made my decision easier. Also for the fact that it would be staging the cancer more accurately.  

Ive recoverd well and feel normal now six weeks post op and only complications I had following surgery was leaking fluid from vagina which was lymphatic drainage whilst healing,  I had to wear incontinence pads but it's all healed and no leakage any more.

Hope this helps

Been given the choice of one or the other. Was told that all lymph nodes would need to be removed not some for testing. 

Just wondering if anyone choose to have radiotherapy rather than nodes removed? Also has anyone gone on to have pelvic radiotherapy following node removal? So many questions buzzing around in my head. 

Hi again, I’m in a slightly different situation as I’ve had my hysterectomy and am grade 1 stage 2. I wasn’t offered lymph node removal, but following my results post op (restaged from stage 1a to 2) I was offered radiotherapy to nuke any stray cells in the lymph area, to reduce risk of recurrence. So I’m just posting here to let you know what radiotherapy is likely to involve. I had a planning CT on Weds, and next month I will have 25 sessions of radiotherapy, that’s *every* day Monday to Friday (except bank holidays) for about 5 weeks. For me that will involve 3-4 hours every day including the journey. So it’s a big commitment. I just thought I’d mention that in case that’s a factor for you at all. Bless you as you think it all through.

Thanks MarmiteFan59 for your reply, very helpful. I will be having chemotherapy for any rogue cell mop up. Got a lot of research to do removal versus radiotherapy. Were you offered removal as an option? 

Hello again, I have remembered that when I saw the consultant surgeon who explained the operation he did want to include removal of pelvic lymph nodes but this was my decision.  I was worried about lymphedema  but he said that there had been no cases of lymphedema  following hysterectomy in their group of hospitals that year.  As my op was on 7 December I felt reassured by this. As I have previously posted despite a full lymphadenectomy being carried out only two lymph nodes were found and tested.  As far as I am aware the number of lymph nodes picked up by the procedure can vary but regardless of number they will all be tested.  The surgeon never discussed having radiotherapy as an alternative. Good luck XXX