Hiya I was diagnosed with endometrial cancer in February I was told mine was a grade 3 mixed cell aggressive basically it can come back quicker than grade 1 or 2 I had total hysterectomy onn19th of February I went back to clinic on Friday 13,th yes what a day to go the consultant came to see me when I was discharged and said when he operated he found something not nice on my overies he suspected was cancer but when I went back I was shocked as I am only stage 1 all contained in my womb the thing on overies was checked and not cancer my dilemma now is I can have more surgery to remove lymph nodes but if they remove I could get lymphoedema and fluid build up in tummy either way I still have to have chemotherapy and radiotherapy I go to chat with oncologist in 12 days as they see this all the time I hope we can stay friends and compare notes my name is Jill all the best I'm sure they will get rid of it for you xxx

Hi Jill, 

Nice to hear from you.  I was given 3 choices of treatment in the beginning. My first and only choice was to get rid of it, why would you want something like that in your body?  My number 1 question to my consultant was 'are my lymhnodes affected' at that time he couldn't answer the question but did say that it would involve extra surgery if they were affected and a PET scan would give this information. My decision still stands, I want to see my grandchildren grow up so I was willing to undergo the extra surgery for the sake of my family. Fortunately my scans showed that my lymph nodes were not affected and that the radiotherapy would cover the areas were the lymph nodes are present.  I was told that one of the side effects of radiotherapy was lymphedema and I think that if we can come this far and go through what we have been through so far then it is the least of our problems we are alive.  The radiotherapy team have been brilliant, I am currently just about to start my 2nd week and I am feeling the side effects.  I am really tired and need to sleep when I get home I have been suffering from nausea and have picked up a cough and a cold because your immune system takes a battering.  I have developed a heightened sense of smell and the hospital smell makes me feel sick as well as all the travelling  but it's something I have to do.  Keep you chin up and keep strong together we will get through this.

I was told removal of lymph nodes can cause lymphoedema that why I don't think I will go with extra surgery as I will still need chemo and radiotherapy after as well as if I don't have them removed still chemo and radiotherapy to get rid of any escaped cells so dilemma dilemma I wish you lots of luck what was your stage and grade mine was grade 3 mixed cell aggressive and he thought I be stage 3 but was stage 1 all contained in womb that why I'm thinking may not have spread cause all other biopsies clear xx

The consultant always said that my cancer was curative and in the early stage which he said was 1-2.   However, after my operation biopsies showed that it was at level 3a and had progressed onto my cervix which was why they decided to refer me to the oncology service for radiotherapy.   They also discovered a polip on my ovary so it was good that they removed everything.  At my initial oncology appointment they had already cross-referenced my CET scan with my PET scan and found that my lymph nodes were not affected.  However, I do know that they have already targeted my lymph nodes during my radiotherapy.  I also have a morbid interest in how things work, so if you have any questions about what is happening to you at any given time when you are in the rooms  the radiologists will give you an explanation, which I found very  helpful.

Be brave 

Tracy

Bless you my consultant told me mine stage was probably going to be 3 then I was pleasantly surprised only 1 it's just the grade 3 that I can't get out of my head can come back quicker if it's any consolation to you I had to go three times have my blood pressure checked and the nurse who did it was 10 years free and hers was aggressive and had spread so I suppose I'm lucky mine is all in the womb and now been removed this is so hard tho to get your head round and everyone is so different xx

Absolutely I dont think anyone can walk away from this without it having affected your mental health.  So much to think of and decisions to make, it's all consuming  It's like it's happening to someone else.  

It certainly is and never out your mind every twinge or pain you straight away think of that if your on Facebook me easy to chat I got couple friends met on here I chat on Facebook nice to compare notes my profile similar to one on here xxx

Hi Tracy53, saw your post, and I am in a very similar position. Hope you are feeling well.  Wanted to ask if I may what's the daily radiotherapy like? I am just about to start and any advice/info would be appreciated (no pressure), would  just be good to get another person's experiences.  Thank you.  Take care.

Hi I was reading through this as worried bout my diagnosis, thought you might be able to gv advice if ok. Because I was originally 1a grade 2 they took no lympthnodes, but after checking they took me to grade 3 as have mixed cells. My fear is they took no nodes, I asked the surgical nurse in care of me and she said they probably won’t take now as means another op, I see oncologist on 30th should I be worried enough to ask him about this 

Hi did u decide about lympthnodes, I’m now in same position as you, I worry cancer will be in them and they havnt took them, I’m also mix cell, what treatment did you have, any advice appreciated 

I have my oncologist tomorrow I’m dreading what will say I rang MDT nurse yesterday and said how worried I was as no nodes taken and everything I read on support groups say they tested them. She said was because when did mri there was no swelling in lymphnodes that’s why didn’t take. But definitely bringing this up tomorrow with oncologist. I will find my treatment out tomorrow so will come back on here and leave message. Hv u got mix cell aswell, they said mine was clear cell, and I’m scared Cos listed as aggressive 

I have my oncologist tomorrow I’m dreading what will say I rang MDT nurse yesterday and said how worried I was as no nodes taken and everything I read on support groups say they tested them. She said was because when did mri there was no swelling in lymphnodes that’s why didn’t take. But definitely bringing this up tomorrow with oncologist. I will find my treatment out tomorrow so will come back on here and leave message. Hv u got mix cell aswell, they said mine was clear cell, and I’m scared Cos listed as aggressive