Endometrial cancer stage one

Hi all

I've just been diagnosed with endometrial cancer and I'm feeling a bit anxious. I had a polypectomy two weeks ago and was expecting all to be fine. I had a Mirena coil put in at the same time which is now looking like it will be redundant very soon. It's all come as a bit of a shock today.

It's stage one, but they aren't sure what grade yet but have reassured me that it is very treatable. I'm going to be having a hysterectomy in the next few weeks, they said will probably be within the next three. They also said that they will need to remove my ovaries as well which I am a bit unsure about as the menopause is going to come in very suddenly afterwards which I'm not looking forward to. Im 48 so was hoping to have a couple more years to go before dealing with that tbh.

If anyone has any positive stories, I could do with cheering up!

  • Hey Kately72, sorry to hear about your diagnosis. That must have been quite a shock.  It's understandable to be worried as you just don't know what is about to happen or when. I was exactly the same. I had never had an operation before so was apprehensive about that but now that I am further on my treatment plan I look back and wonder why I was anxious. It was fine. Just take each step day by day. I had a radical hysterectomy at 52 and now I would never know I had it! I am here to answer anything you might have, but it's never as bad as you think and hopefully if it's stage 1 you might only need the op and no further treatment. You can do this. x

  • Sorry you had bad news there and I'm sure it's a horrible shock. You have plenty to be optimistic about but that doesn't stop it feeling horrible or stop you feeling worried. I'm the same age and have also not long been diagnosed. The Mirena coil is supposed to be the treatment for people who can't (or don't want to) have the hysterectomy so it's really not a waste for you. I can't have the hysterectomy so it's going to my treatment - but not until after lockdown. 48 is relatively young for this cancer so we both have excellent odds - still scary but the old cliches of allowing yourself to have your feelings and taking one day at a time seem to help me. Hope you're feeling ok and have a reassuring consultant and get what you need soon. 

  • Thank your for your reply. They did mention that they often put a Mirena coil in ladies who are a bit frail or elderly so I'm aware that it can treat the condition. I think I still want it all out though, although it is the most radical option. I hope your treatment goes well and let me know how you get on. K x

  • My anxiety has now gone into overdrive! I had a chest xray last week and now I've had a call to go back for a shoulder xray next week and I'm absolutely terrified that they've found something else. I have no pain in my shoulder at all so I have no idea what's shown up. Anybody else had similar?

  • Im 45 and have just recently ( in April 2020) being diagnosed with womb cancer grade 2 endometrial adenocarcinoma.  I think its stage 1, they told me they dont stage you until they remove it, The CT scan said it was contained in my womb, and from what I've read leads me to believe its stage 1, I'm currently waiting for a hysterectomy, which they wont do at minute due to covid, and also because I had a heart attack in march, and am on blood thinners, it was during my hospital stay that they were concerned about my being anaemic, I had gone 2 years without a period, I thought it most likely the menopause, I went to drs re a few issues I was having and was given ovestin cream, and I also tested for diabetes, which I later found out I had diabetes type 2, this was in feb 2019 last year, the ovestin cream I used for a month but I stopped using it as it seemed to start my periods again, or what I thought were really heavy periods, I thought they would eventually stop, if I did not use it. I do not believe I would of gone to the drs about it. March 2020 was when i was in hospital, after a heart attack, I needed a blood transfusion for being so anaemic they believed it had caused a strain on my heart, (I also had to have a stent put in, I had a blocked artery, which I've since found out diabetes can contribute towards it) this was when they questioned me for the reasons for me being so anaemic, I explained my history of heavy periods, thats when they decided to do a biopsy, which confirmed 2 1/2 weeks later I had cancer.

    I should say that I have a history of irregular heavy periods (12 years) prior to me not having them for 2 years,  and anaemia, was told this was due to having a underactive thyroid, so when they started back up I assumed it was same and did not bother drs, if I had not had a heart attack I do not believe I would of found out I had cancer until it was more advanced, sounds silly to be thankful for a heart attack, but it probably saved my life.

    Im currently on hormone therapy, the Consultant said this was to buy time until its safe to do the hysterectomy, leaving the cancer there does not feel right tho, I ve to have another CT in another couple of months, to check on everything, The first CT found a small lump in my breast which they think is fibroadenoma, but again due to blood thinners they cant do a biopsy on to make sure, they also found a couple of lung nodules, which they want to keep an eye on to make sure they dont grow, which i think it probably due to all chest infections I've had, I'm asthmatic and get chest infections easily. Sorry its such a long read.

    As for pain it feels like really bad period pain, which varies often, is this what others feel. I was told to contact them if I started bleeding but am unsure if they mean any bleeding or just heavy bleeding, so am unsure if I should be telling them about the light bleeding I have had over last week, nor am I sure who to contact.

  • Oh goodness it does sound like you have been through the mill. Might be worth checking with your GP about the bleeding if you're worried but it could be something to do with the hormone therapy perhaps? I had a coil fitted after a hysteroscopy three weeks ago and they told me that they often give hormone treatment or the coil to keep things under control in older ladies as well as younger ones who are yet to have children. 
     

    I'm having my op on Wednesday now. Luckily coronavirus hasn't stopped treatment where I am. 

  • I was diagnosed back in Feb. I have got to have a total hysterectomy and an oophorectomy. My operation has been  cancelled 5 times due to covid as I will need an ITU bed after surgery.  I had a coil fitted and was given hormone treatment but I had an allergic reaction. I'm now taking Letrozole which make me feel rough. I'm very breathless too. I bleed from time to time and also have a prolapse which makes me very sore. I'm getting very frustrated and am scared of having the op. I hope you get your treatment soon. I just need this to be all over. Sorry for the long post xxc

  • I was 68 when diagnosed in April last year after having lower abdominal pain,spotting and vaginal burning. After an ultra scan showing a fibroid I had a couple of examinations including a hysteroscopy with biopsy. A fibroid was removed showing stage 1 cancer. That was a shock as I had had a fibroid removed some years before which was benign.
     

    They told me it could be cured but I needed a total hysterectomy including the removal of ovaries and Fallopian tubes. However being overweight I needed to lose weight. To stop further growth (while I lost weight and dealt with other problems like blood pressure and a possible heart problem) they inserted a Mirena coil with progesterone. This was in July/August last year. I went to slimming world and lost 3 stone. They could operate! It was due on 21st April but Covid came along .. it was postponed. I was told the operation was to be treated as urgent.
     

    I got a phone call from my hospital ....they were going to go ahead having split the hospital up into Covid and non Covid areas. They did a pre-op assessment including a Covid test. My operation took place on the 12th of May and was successful! They found another small fibroid but the diagnosis was stage 1 1a. They believe it is cured which is a huge relief. I go back for a check up in November.

    I am in recovery mode .. you will be tired/sleepy,cannot lift anything of weight. I was taking Fragmin blood thinners by self injections,which left me with bruising, but have finished them. You may not need them. You do need to wear anti clot socks that they give you 24hrs for at least 8 weeks. There is period like bleeding so get pads of the heavy duty type.

    It is ok if they do it laparoscopically .. they keep you in overnight or slightly longer to ensure you can pee etc.

    You can get over it .. stage 1 can be cured! Just follow the advice of the oncologist doctors / nurses. They were great with me and will answer any questions you have.

     

     

  • Hi Katelu

    I hope you're recovering well from your surgery and haven't had to many surgical menopause issues.

    I had my surgery a year ago (today marks the exact date of my first attempt but was cancelled due to finding I was allergic to penicillin while I was on the operating table, we tried again a week later)

    I was 38 and was grade 1 stage 1b and had 3 brachytherapy sessions.

    I hope you're doing well and healing up well.

    all the besy

    stacey

     

  • Hi Stacey, 

    May I ask whether you were given any scans before thevhysterectomy n after you were diagnosed? Did you have scans of your chest and pelvic?

    I have stage 2 EC. I will start radiotherapy next month. But I have not been given any scans up to now. I am worried it has actually spread. 

    Hope you do not mind sharing with me. 

    Best wishes, 

    Chui