Endometrial cancer

Hi Healangel, and welcome to the club that no one really wants to join.  It's a very worrying and scary time when you are first diagnosed and you will be in a sort of shock.  We have all been in that position and I promise you it does get better.  Once all the necessary investigations have been done, and a treatment plan made, you will feel more in control of the situation.

the first thing to say is that once you have a cancer diagnosis treatment is supposed to begin within 62 days.  For many people things happen even more quickly than that.  Have you been told the grade or type of cancer which you have?  The MRI will check whether it is contained within the womb, which fortunately is the case for most people.

I had keyhole surgery for womb cancer in May 2018, having first been referred to the gynaecologist at the end of March.  the  diagnosis hit me like a ton of bricks and I was terrified.  The diagnosis of cancer came at the end of April (after the usual biopsies etc) and I had my histerectomy on 23rd May.

It was not at all as dreadful as I had feared.  I found the anaesthetic quite a pleasant experience, wondering why I wasn't feeling sleepy one moment and then waking up in the calm of the recovery room the next moment.  Although i had a period like pain, I didn't feel ill otherwise.  I was given a shot of morphine and taken to the ward where I spent a dreamily contented afternoon.  The deal my surgeon had made with me was that if i could go to the toilet to spend a penny, he would let me home.  so late afternoon I got out of bed and walked - very carefully and gently but perfectly steadily to the loo and satisfied my half of the bargain.  I was home watching telly later that evening having walked down the hospital corridor and across the car park.  I didn't have drains or catheters or anything like that after the op although I know it varies from hospital to hospital.  It was all very un-dramatic and i was surprised how little discomfort I felt.  I had three puncture wounds on my tummy which I had to be careful of by not wearing tight underwear or trousers.  I moved about carefully, didn't overdo it for a week or so but found that I recovered quite quickly.

So my message for you is take heart, its not as bad as you think.   Others will be along soon i am sure with their experiences.  When you have your date for surgery we will be able to advise you on what to take with you and various tips.

I hope you get your MRI date soon.  IN the meantime be kind to yourself, try to keep busy and 'carry on regardless' as much as you can.  And please do ask as many questions as you want.  No question is trivial or silly.  We only have one rule here, and that's keep away from Dr Google.  Some people want all the information they can find, others prefer to leave technical details to the medical team, but reputable sites like this one, CancerUk and NHS are the most accurate and up to date.

Very best wishes

Steph

Hello Steph,

Thank you for the information and I am sorry you have has to go through so much...Is everything fine for you now?  You are right a site no one wants to join, I have been using Dr Google and have stopped now as family and friends have said the same...4th of June I went for a hysterscopy/biopsy and then had to wait for results. I was called in on the 14th of June, 4 days before my break away for a week. I am having my MRI on the 28th I think as I was told I would get a call when I return from my break. another thing I am scarred off is the MRI as I get claustrophobic the nurse at the hospital was very supportive and said I could go feet in first.   

Your experience helps me as I am terrified, I have been told a total hysterectomy...I want to keep my ovaries as I have not hit menopause yet. I did not discuss as they said MRI will reveal more. I think they do a plan for you after the MRI scan...I feel a bit better thank you once again for your advice...If anything pops up I will message you again. Take care 

Hello again, yes I am fine now.  I had radiotherapy after my op.  Not everyone does but it was recommended for me.  Now I see my s oncologist every three months, which is a bit nerve wracking but also reassuring.  But I feel fine.  

I didn't have an MRI but others on here did.  I know it can be quite noisy and some people find it a bit claustrophobic.  If you are really worried about it you could ask for a mild sedative beforehand to help you relax.  

The MRI helps the surgeon plan your surgery .   Hopefully you won't have to wait long after that for your surgery.  So it might be a good idea to make sure you are prepared to have a restful time after that, eg make and freeze casseroles etc and make sure all those jobs that will niggle at you are done.  It might be a week or two before you can reach high up or bend low down.  Focussing on the practicalities will help you to feel prepared and in control.  Do keep in touch and let us know how you go on and when you get your date for your op.

Hi Healangel - I will be two weeks post op tomorrow (Tuesday). My lining was 20mm and I was told I had cancer too. I also had an MRI and CT scan. I worried myself silly about them and was pleasantly surprised how easy they were. So much so it wouldn’t worry me if I have to have any more. 

The surgery was done keyhole and I did have a catheter and drain post op but still got out on the Thursday. I stopped painkillers that weekend and haven’t needed any. I’m keeping on the move, doing short walks and I’m up to 5000 steps per day. Pre op I regularly did 10000 steps so I’m getting there. 

Remember that there is no such thing as a silly question so ask away. The ladies on here helped me greatly with tips etc 

Take care x

Hi healangel ,

i had my hysterectomy in august 2017 for womb cancer and that was all the treatment that I needed, I was 35 when I was diagnosed. I had the MRI scan a few weeks after my diagnosis and then my operation a couple of weeks later, I went on my pre planned holiday between my diagnosis and my MRI scan. The MRI scan wasn't bad at all, if you go in feet first your head sticks out the top of the machine, the women there were really lovely, let them know you are nervous and they will take good care of you. They play music through headphones to dull the noise and they can hear you throughout, you also have a button you can press if you want out of the scanner. 

I didn't find the hysterectomy that bad either, it was much better than I feared, I had open surgery and was home after two nights, I only needed ibuprofen and paracetamol for pain at home and stopped them after about a week. 

Any questions you have just ask when you are ready, lots of love

xxx

Hello again,glad to hear you are better...I watched a few online MRI youtube videos and feel a little better, although time will tell... 

I have my MRI end of June and hope I can get my procedure done end of August as I have functions and another break planned away..

I was thinking the same to freeze food such as casseroles and a few curries etc.. Thank you for your quick replies and I will update you more after my MRI, take care  

Hi GrannyA

Thanks for your reply, I am glad you are recovering well. How long did your op take and did you have your ovaries removed?

I am worried about the menopause starting and how I will cope.. You take care too x  

Hi Aria,

How are you feeling now nearly two years later? did you suffer badly with the menopause and did you have your ovaries removed?

I have a lot of things planned for July and first three weeks of August (that time of year) and as I am writing this I am away tomorrow for a week. I feel a little better about the MRI which is end of June, I suffer with chronic pains so think my recovery will be slower...

Thanks for replying and I will ask again when I know more... thank you x 

Heya Healangel, 

Did they say anything from the biopsy about what stage or grade you're at? (Sorry, can't remember which comes from biopsy and which from MRI/histology at the moment, headache brewing)

I ask because if you've not gone through the menopause yet and don't want to go through it, and you're an early stage and grade - then you might not need to have a hysterectomy. I didn't.

I went for hormone therapy treatment which is a Mirena Coil and Provera tablets twice a day. Totally got rid of my cancer as things stand at the moment. Problem is, not all Dr's offer it because it's a relatively new treatment. So might be worth asking your Dr's about it if you would rather avoid surgery and the menopause. See if you're eligible.

Speaking of ovaries, I was told that if I had the hysterectomy then they'd take my ovaries. Only because if they didn't, they'd be sitting in me like two time bombs, waiting to go wrong. So it would undoubtably mean more surgery down the line to remove them. So better to take everything in one go during the hysterectomy. 

Lass

Xx

Hi,

Im feeling good thanks, I had my ovaries removed and have menopause. The hot flushes are manageable with a fan, I have a rechargeable hand held one and a desk fan at work, winter isn't too bad, it's more summer, light layers are also great so that you can add and take away clothes when you need to. My flushes aren't as regular as they used to be, they have gotten better with time. Emotionally I'm a bit up and down, they do have medication to help with it but I'm trying to do without that and have had some counselling. Meditation and mindfulness videos can help too. It's getting better with time but I'm impatient lol. 

Everyone has a different experience of menopause though, some folk breeze through without any symptoms.

xxx