Hello!

thank you for responding- we are in the same boat. I am annoyed with myself for not going to GP earlier - I now look at symptoms and so many things should have told me to go to GP and I simply went cause I could not shift a water infection. May I ask what prompted you to go to GP? I had to wait ten days for my scan - but I drove home from that scan and as I walked through front door my GP phoned me to say I was on cancer pathway via NHS - go back on 17th but I cannot fully remember what she told me. I will call tomorrow and see if she will repeat what she told me on Friday.

I am 54 - post menopausal, can remember the GP telling me lining of womb was in excess of 10mm. I did have to call hospital and progress my appt for scan and they had the wrong address for me - apparently hospital has different database to GP!! Letter went to where I lived four years ago! So glad I phoned to find out what was happening. Take care to you too and maybe it’s worth phoning hospital to check your referral is there?

hi laney

Appreciate your reply

I thought my `pains` were part of my ME / CFS, so did not really think they would be anything else, cos got sick of being told ` its the CFS / ME / FM`.  We also had a lot of upset with my dad recently being very ill very quickly and subsequently being diagnosed with leukemia - thankfully all is going well for him at the moment, with monthly check ups etc.  I had pelvic pain, which i put down to pelvic arthritis issues, hip arthirtis etc, but then started with agonising pain in my rectum at the same time as the frontal area.  When pains were bad i had frontal discharge which was pinky, and not pleasant.  I went to GP and had an ultrasound which showed a polylp and thickening of the endometria / womb lining .  Went for hysteroscopy, the polyp was too large to take out in an outpatients setting, so did biopsies.  A week later got a call on a friday aft to see consultant on monday.  Told womb cancer, biopsies `very abnormal` - treatment  needed within a 4 week period.  Went for MRI to see if spread to other pelvic areas , etc, thankfully has not.  Got my pre-op date and pencilled in surgery date - all just one day over the 4 wek period.   Hoping the hysterectomy can be done by key-hole, quicker recovery etc .  Thanks for your response, take care, x

Hello - nearly 3 weeks in and no news. How are you doing? 

Hello just added you as friend so I could message you. nope nothing from me as yet just as well as I have some stressful stuff going on right now. I had a full mot at that time so my thyroid has came back fine and they ran some other tests when I was bleeding at the GPS and they have come back fine. 

Hi, had some great news...my biopsies came back clear.  I have to have another colposcopy booked for the 30th March to remove a lesion but no nasty cells.  I was given the option to leave it but decided I wanted to get rid!  Hope you're not waiting too much longer and you get some good news too. 

My biopsy came back clear today too I waited 10 weeks on the results so relieved I had a bleed after being through the menopause and my womb lining was 5 cm the waiting all those weeks is terrible 

Hiya 

im so sorry to disturb you 

I'm just out of my mind and need to speak with someone that has been thru this 

do we have the fear of this returning in the 1st year 

I keep googling and making myself crazy 

I was given the all clear in February 2021, and I am wondering the same thing, all I was told was to look out for bleeding and weight loss, I'm coming up to my 6 month check up, not sure really what to expect.

It has been just over 2 years since my total hysterectomy, which was gladly all that was needed to cure the endometrial cancer.

Obviously its a worry that every niggle / pain in the gynae area  is something to worry about -  but its not always the case.  If you have any worries contact your team, who can get you back in to see them within 2 weeks if they feel it necessary to do so.  I had to call my team one time after cos i thought it was a concern, went in , had some swabs done and was an infection which cleared with antibiotics.

I was given literature after all the follow up appts completed,   patient care plan - and told to look out for any signs such as vaginal bleeding,  abdominal swelling / discomfort, loss of appetite or nausea, etc. but obvs these symptoms can be so many other non-serious things.    If you have completed your treatment they should have given you a doucment explaining this also details of who to contact with any concerns.  My team were brilliant.

I recently had severe stomach  pain and my mum thought the cancer had returned  in my abdomen or elsewhere, it turned out to be an infected / inflamed gall bladder with one huge stone stuck.

I do understand how you feel, if you want to talk offline, send me ` `friend request` on here.

take care

SNOOPY47

Hi Leilani

I hope you are well 

I hope you don't mind me asking 

have you been ok since your op ?

im having my op in 2 weeks 

thank you 

Thank you 

I'm now waiting for my op 

but I'm just so worried 

I had my operation in jan (Total laparoscopic hysterectomy, with both my ovaries removed, with peritoneal washings)  everything went well, I had a little trouble with infections afterwards, but that was probably due to being diabetic and that I easily get infections. All biopsies taken came back negative in early feb. I went home the day after my operation as I was doing well moving around, it really was not too bad pain wise, but I 've being through 4 C sections before, and compared to them it was easier.

Have they indicated at what stage you are, I was stage 1a, I did not find that out till February I know they don't really grade them until after the operation, but they did say they thought they had caught it early before the operation. I also did not need any other treatment which was good, but it was worrying waiting, it took about 2/3 weeks after the operation to find out my biopsy results and for them to stage it, there is a relief once it's finally taken away.

I had my operation in jan (Total laparoscopic hysterectomy, with both my ovaries removed, with peritoneal washings)  everything went well, I had a little trouble with infections afterwards, but that was probably due to being diabetic and that I easily get infections. All biopsies taken came back negative in early feb. I went home the day after my operation as I was doing well moving around, it really was not too bad pain wise, but I 've being through 4 C sections before, and compared to them it was easier.

Have they indicated at what stage you are, I was stage 1a, I did not find that out till February I know they don't really grade them until after the operation, but they did say they thought they had caught it early before the operation. I also did not need any other treatment which was good, but it was worrying waiting, it took about 2/3 weeks after the operation to find out my biopsy results and for them to stage it, there is a relief once it's finally taken away.

Yes they've said it's grade 1 

stage 1 

I had my mri so they can see it's quite contained 

but he sent me for a ct scan 

that scared me when he sent me for that but he said it was just to tick a box 

he has been quite honest with me through everything 

I've tried looking on here for reoccurring endometrial but I can't find anything 

I'm hoping it's not common but google says otherwise 

Hi mmazzz

i feel like I am in a very similar place to you. What was thought to be a fibroid and peri menopausal symptoms has ended up being endometrial cancer. I was meant to have a robotic laparoscopic hysterectomy and removal of sentinel lymph nodes 2 weeks ago, but it got cancelled at the very last minute. Unfortunately every stage has been slightly delayed due to the COVID back log, nobodies fault and the hospital team have been great but as you know it is such an anxious time. I am now planned to have my op in about 10 days. I do not know my stage yet, but they are hoping it is contained in the womb and I will only need surgery, but I will have to wait to know fully. 
like you I looked up recurrence and this scared me, I have a teenage son with special needs who needs me around for a good few years yet and I can't get this information out of my head. When I saw the oncologist before I read this he seemed to imply that this wasn't the case, but I am going to ask him specifically after my surgery. I think we probably both need to get through our surgery and see where we stand then ask those difficult questions, but it unfortunately doesn't reduce the panic. Do you know when your operation is ? How are you coping with the wait? I' ll be thinking of you xx

Hiya 

im having my op on 2nd august God willing 

honestly that's all I've been Googling 

but like you say the oncologist didn't think so 

and to be honest they have been honest with me with everything 

I have spoken to an aunt if mine that had this and had her op 10 years ago and she's fine 

I've also spoken to 2 more people today and they had it done a while ago and they're also ok 

I asked my oncologist quite a few times and I'm different ways and his answer was NO 

so I think we need to stop googling 

they told me what stage I was at after I had my mri 

Hi Maazz

 I truly believe we have to trust the oncologists, there is no benefit for them to not tell us the truth even if it is bad news because they then cannot help us or refer us on to other services, in the NHS they also have to follow strict guidelines and protocols, so I do think we need to feel as safe as we can in their hands. I said to myself I wouldn't google, but then at my weak moments I have and I shouldn't. 
my op is on the 28th so just before yours. I hope that you can find a way to cope until then, I do feel like my life is on hold at the moment, but that is largely my own fault because I'm keeping away from everyone , partly because a few friends kids have COVID, or they are teachers and I don't want my op cancelled because I get pinged and partly because I can't face talking about it yet. I do hope you are ok, know that your anxiety is a very natural process, but whatever the outcome you are in the best possible hands and the specialists believe they can help you. I'll be thinking of you xx

He's honestly been so honest with me 

I asked my gyno if I was going to die and he said 

noooo you've got lots of years ahead of you 

let's stay strong 

xxx

They said mine was contained within the womb as well,  they did not stage me until after the operation, I was grade 2 on the biopsy that was back in april 2020, I had to wait until Jan 21 for my operation, I took megace to stop the tumour growing, I think a lot of delays are Covid related, mine was, but it was very worrying knowing it was there, and no idea when they would operate, the relief it was all gone was imense, but even tho I know it's all gone there's always a lingering thought of what if? I assume this will get lesser as time passes. They will keep an eye on you for 2 years after the operation, I'm just coming up to my 6 months check up in the next few days.

Hi Leilani23

How are you doing now ? It must have been hard waiting so long, all of my diagnostic stages have been slightly delayed because of COVID, but nothing like yours, I do hope you feel you are coming out the other side now? How was your recovery after surgery. Like you I won't have staging until after my surgery on the 28 th, I'm struggling to think about anything else at the moment, are you having any further treatment?  

I was the same with worrying before my operation I think it's normal, I do not need any more treatment, I think that they decide if you need further treatment on what they see and the biopsies they take and the results from the washings, they will come through around 2 weeks after your operation the consultant rang me at home and told me mine were good no cancerous cells were detected it was a big relief. The operation was not too bad at all, I thought it would be a lot worse ( I've had 4 C Sections, so the pain was very familiar) the scars are 3 very small ones and your belly button, which shows no scarring, I did get an infection about 3/4 days after the operation, I kinda expected I might I did with all C Sections. I'm slowly feeling less paranoid about everything, still a little worry now and again, but as more time goes by I feel less stressed, it good to be on the otherside. If you any worries or questions feel free to ask, good luck with your operation, I hope it all goes well for you both. I have my 6 month check up tomorrow.

Thanks, Good luck tomorrow, let us know how you get on x

All went well for me, if you don't mind please let me know how you are doing/getting on. Wishing you the best of luck.