Hi. I'm new.

Hi SharonB1966 .  I am so sorry you have been given this diagnosis, but you have come to the right place for support.  There are ladies here with various different types and stages of womb cancers with other medical issues, and hopefully someone will come along soon who might have had a similar experience and be able to help and reassure you.  

Sending hugs, 

Lesley xx

Hi Sharon,

Sorry you find yourself here but this is a safe place and the ladies are lovely and have lots of experience. I know you are frightened but your doctor's will look after you. I've had 2 gynae operations for cancer and I'm still here. I know you've the added complication of Crohn's but just think, you'll have 2 Consultants doing your op and 2 heads are better than 1. I'm sorry to hear about your husband, that must have been a shock, which will still be affecting you.

I'm also Grade 3, please click on my username if you would like to read my profile. I'm 53 and I'm hopefully currently well, I was diagnosed in January. I hope you get a date for your surgery soon, take care,

A x

Hi,

I have tried clicking on your username but it is not leading me anywhere.  Can I ask what operations you have had?

Hi Sharon 

So sorry about the recent diagnosis and from that you find yourself here but you'll have plenty of support from this forum which I really could not have done without.

I'm Grade 3 too, if you click on my username you can catch up with my journey so far. Please don't let bad thoughts run away with you, we've all had the feeling that the disease is growing out of control and with myself I was actually having IBS like symptoms and couldn't wait to get it out of me. My timescale was about 8 weeks from hysteroscopy (took biopsy) to hysterectomy and to me it seemed like ages I too worrying all the time but  MRI staged it as Stage1a (grade3) After hysterectomy the histology still confirmed it was stage 1a. So please don't worry and try to remain positive. (Easier said than done I know). But remember we are all here for you. I hope you gain some reassurance from this and please do ask anything else you need as myself and others have been there! 

I don't have any other health problems but can understand how difficult it's trying to manage one symptom without this other situation and all the time you're still grieving your husband! You've been through the mills but can come through this just believe.

Take care xxx

Thank you Madesp.  I have read your profile.  I am trying so hard to think positively.  But I am so worried that I a) won't wake up after the op as it is so big and b} will basically die of cancer.  I am trying to think of it as living with cancer, not dying of it.  After all, I have had Crohn's for 23 years and there is no cure for that and yet I don't think of it as badly at all as I do this!  

My work have been really good.  I work for a Community Interest Company so am only entitled to 2 weeks sick pay, but they have said they will pay me for 2 months full pay and then see how things are and revisit.  But I work from home anyway so assuming I wake up after the surgery! hopefully within 2 months I will be able to work on my laptop.

I just feel like the unluckiest person alive!  I know that sounds so selfish and I don't mean to sound like that but at the moment I can't help it.  I know no amount of worrying is going to change things.  I have got cancer and I need to deal with it but it is really frustrating me when everyone I know says, you are so strong Sharon, you can get through this, blah, blah, blah!  Well, I dont feel strong and I'm not sure I can get through this!  

Can you tell me, is it normal to be thinking like this at this stage of finding out?  Is the best way to deal with just to ride the waves of emotion and not try to be strong for everyone else?  I don't even know if what I have just said makes sense!

My actual diagnosis is Grade 3 Endometroid adenocarcinoma with probable carcinosarcoma.  I don't know the stage yet.  But the oncologist has said there is a 5-year survival rate of 40 - 60% with what I have and depending on stage.  That isn't good is it?

I feel like this has not been caught quickly.  Am I overreacting?

Sharon, it's perfectly normal and you only found out 3 days ago! It's like a train running through your veins giving you all these thoughts and worries and you're trying to process it all. Yes I was the same but I tried very hard to play it down for the sake of my family,  as we had already had a massive loss my beautiful son and they thought " oh no here we go again". I remember going round the garden on my own one day shortly after diagnosed and thinking the worse in everything, I thought only of death, my death and very tearful but they couldn't see me I kept that part away. But I now refuse to let it consume me. I've had the op, I've done the treatments and I'm told all is well and I'm gonna keep going and living. Oh and I managed to work from home after op and during treatment -my choice and I'm glad I did. It's kept me on an even keel.

Just remember that the team looking after you are going to be wanting to do what's best for YOU they won't take uneccessary risks, they want you to LIVE! They will talk you through the plan and there will be a nurse specialist for you to talk through anything else you need to know. She Will be your main contact (I hope you do get one). They are accessible to you to phone or email any queries you may have before the operation and after. 

Don't overthink the survival rates, so it's 50 or 60%??? Why shouldn't you/me/other ladies be one if those?

It's still very raw and you will have lots of questions... we're here for you! 

Take care xxx

Hi Sharon and welcome to the group. You’ve had a shock and are likely to still be reeling from that and trying to adjust and take it on board, so please please try and be kind to yourself and gentle with yourself. Also try not to worry about being “positive” all the time - that puts a lot of pressure on you and more pressure is what you don’t need. My way of looking at things is that we don’t need “positivity” to get through this, but pragmatism - the willingness to just get on and do what needs to be done. Even on days when we don’t feel positive, it’s possible to be pragmatic. Do you have any health issues other than the Crohns and this? I see from your bio that you have a Cavvy - what colour and how old?  My last dog was a black and tan Cav boy. 

I think I have been through every emotion possible since my diagnosis with womb cancer, Mine came out of the blue and was picked up after various scans I had after being diagnosed in March 22 with myasthenia gravis - an auto-immune condition which causes muscle weakness and fatigue. I had sailed through menopause years ago (I'm 67 now) and had absolutely no unusual symptoms but luckily the indications are that it is 1a. Living alone I had a lot of time to imagine this cancer running through my body, and feeling that I would be very incapacitated after a hysterectomy. Then I freaked out when they said they were booking an ITU bed for my recovery as the myasthenia can cause breathing problems as they use muscle relaxants when operating. Thanks to some excellent care by the anaesthetists I had no problems at all. Now, I am 10 days post surgery and the pain is far less than I imagined, and I am able to potter round the house but am trying to be sensible about not lifting anything etc. I have managed a couple of gentle 10 minute walks outside but use my walking stick for a bit of confidence. My mind is still racing away with the what-ifs though as I wait for the histology reports which should be in the next week or so. I feel I could sit and worry myself to death which is ridiculous I know, but in the wee, small hours you don't always think straight. I even find myself getting angry as I lost my son last year very suddenly and was just getting things back together after last Christmas and New Year when I first had the myasthenia diagnosis, then an eye problem which I will have surgery for in the Spring (it was actually meant to happen a couple of weeks ago but was postponed because of the hysterectomy). Most of the time I can find a lighter side to life, and I am fortunate to have a very supportive daughter and family and friends, but I have to say that today I feel very tired and emotional and am allowing myself to have a bit of a wallow and a few tears. Life just really is c**sometimes, isn't it? Tomorrow though I will just have a word with myself and get on with recovery. The ladies on here are very supportive and I found it extremely helpful to "talk" anonymously to people who have been through similar things but without that emotional bond which can mean you hide your true feelings in order to protect your loved ones. I wish you well.

Hi Sharon,

Hope you can read my profile by clicking on sistermoon now that the site has been updated. Let me know if you can't as someone said this before.

My ops were a total hysterectomy, from which they thought the cancer was 1a, 2 weeks on, after the removed womb had been through tests, I was given the shock that it had turned aggressive and gone through the muscle layer, maybe to lymph nodes. The 2nd op was to stage me properly and lymph node dissection. After which I was told that there was new vaginal tumour growth since the last op. I had further tests and scans, have had radio and chemo and am now hopefully well for a while. 

I am still here, yes I've been through a lot and have the war wounds to show for it but my story is no more extreme than any of the other ladies in the group. The shock is difficult to deal with at first and the thoughts of death, particularly when I had just sailed through life and took it for granted that I would have a long life because my parents have. It is difficult to come to terms with but these things take time and you will find your own way. Don't be hard on yourself, you've only just found out, you're bound to be shocked, angry, frightened. Don't get bogged down with other people and positivity platitudes, look out for yourself, you are now top priority. It took me a long while to get my head round that part. 

Keep in touch and take care,

A xx

Hi,

Yes, I have a cavvy.  He is also black and tan.  He is honestly my little rock.  Ever since my husband died suddenly last year he has been there for me.  He rarely leaves my side and since I have had this news he seems to know something is wrong and is literally on me all the time.  His name is Bear.  

No, apart from Crohn's Disease, I don't have any other health issues.  But the Crohn's is making this very complicated and complex.  I spoke to my Crohn's specialist last Friday and she said that they were going to be discussing my case at an MDT meeting yesterday.  I had a call from her secretary today to say that they decided it was so complex they have decided to meet separately to discuss, sometime this week.  That is all well and good, but for me if feels like I am a ticking time bomb!  The oncologist has said that it is grade 3 which is aggressive or so I understand.  Sop surely as each day passes, this thing is growing inside me isnt it?  I asked my oncologist, and he said two or three weeks isn't going to make a difference and it important to get it right.  I do get that but still, I want it out of me NOW!  Especially as I have been taken off the Infliximab infusions as they deplete my immune system.  It feels like I am waiting to see which one gets me first - the Crohn's or the cancer!

I am probably repeating myself - apologies for that.  My head is like scrambled egg!