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 again, could you tell me how bad a womb biopsy is? Just my doctor said it was not pleasant which I thought god it must be bad! Thanks again Pam

For me it was a little like getting a smear, but more painful, people since then have recommend taking paracetamol and ibuprofen before the biopsy, but at the time they did not really explain what they were doing, just taking some samples, I did not really worry about them until I got a phone call asking me to attend an appointment 2 days later, the biopsy results took about 3 weeks to come back, the waiting is the hardest bit.

Hello

I'm new.

Looking for some help. Im 51 just had a minor bleedi ast week after 2 years of no periods. I have a cancellation app tomorrow at the hospital tmw to follow this up. The receptionist said the app should take no longer than 20 mins. What can I expect at the first app? Trying not to worry until I have something to worry about. 

Thanks

Hi

thank you for replying I have heard it’s painful. I had a colonoscopy last week and that was really painful. I chose to take no sedation bad mistake told result of that 5 weeks. I have to see a Dr at Gynaecology on Tuesday. My Dr thinks they will arrange for a womb biopsy after the meeting. 

I believe some tests are taking longer than usual because of covid, I hope all goes well for you, please let me know how you get on, the waiting and not knowing is the hardest, just take one day at a time, I struggled with not being able to concentrate on anything for long, once they did my CT Scan they found lung nodules and a lump in my breast, I had more tests and waiting to go through lucky enough neither appear to be cancerous, be kind to yourself and feel free to talk about it.

Sometimes it turn out to just be a hormonal, but always best to get checked out, for me I had 2 years of no periods, so when they started again I did not realise that I should of gone to see my drs, instead I ignored it, they were really prolonged and heavy, in the end I was so anaemic that I had a heart attack and needed a blood transfusion, that when they decided to investigate and found I had grade 2 endometrial adenocarcinoma. I'm now cancer free as of this January, I'm still recovering from the hysterectomy, I had trouble with infections afterwards, but it's all now cleared up and I'm doing well, if you have any questions feel free to ask, and please let me know how you got on. I know this is a very scary time, I wish you luck at your appointment, they will probably ask you loads of questions, they may examine you, that's what they did with me, they may want to take biopsies, not sure if they will do that on that day, which is what happened to me, or arrange to do them at another appointment, I did not to through the usual procedures as they did all mine while still in hospital with my heart attack. I hope everything is ok.

Thank you so much for helping. My Gynaecology appointment has been brought forward to Tuesday 16th.I will defo let you know what happens.

Hi just had my biopsy today as I had thickening, consultant didn't say how much and I didnt ask. Due to covid the expect tge results to take 8 weeks. The only parting comment he left me with was it happens to 5 or 10 per cent of women my age and if it is cancer its very easily treatable. So I cannot get this comment out of my head that he is pre warning me. Can they see anything other than the thickness when they carried out the scan. I just have to out it to tge back of my head and wait 8 weeks.

Same here...was told mine was thicker than it should be but no detail. Also small cysts on ovaries they are not worried about due to normal blood tests. Patch on cervix was an extra - never missed a smear test but did have a cervical erosion about 30 years ago  Appintments have come through very quickly so far so grateful for that. Was told 2-4 weeks for results but should probably expect longer.  

The waiting is the worse part, the not knowing, it weighs heavy on your mind, I had a 3 week wait from my biopsy results, but at the time they did not really say what they were testing for so therefore I was not really worried, that is until they rang me. I do know some areas are quicker than others with testing but do know Covid is slowing everything down, I had to wait an extra 3 months for another CT Scan.

They usually catch womb cancer early due to the bleeding issues that go with it, most people go to see their GP pretty much straight away.

I had a total laparoscopic hysterectomy my ovaries and cervix were also removed, all tests afterwards ( came back within 3 weeks) say all my cancer is gone, so I do not need any other treatments, which is a great big relief, but they will keep an eye on me for next 2 years, I was told to look out for unexplained weight loss and any vaginal bleeding, any of those and I'm supposed to go see my drs. They will do a 6 week and a 6 month check, the first one will be a phone consultation, the second is an appointment.

The waiting is the worse part, the not knowing, it weighs heavy on your mind, I had a 3 week wait from my biopsy results, but at the time they did not really say what they were testing for so therefore I was not really worried, that is until they rang me. I do know some areas are quicker than others with testing but do know Covid is slowing everything down, I had to wait an extra 3 months for another CT Scan.

They usually catch womb cancer early due to the bleeding issues that go with it, most people go to see their GP pretty much straight away.

I had a total laparoscopic hysterectomy my ovaries and cervix were also removed, all tests afterwards ( came back within 3 weeks) say all my cancer is gone, so I do not need any other treatments, which is a great big relief, but they will keep an eye on me for next 2 years, I was told to look out for unexplained weight loss and any vaginal bleeding, any of those and I'm supposed to go see my drs. They will do a 6 week and a 6 month check, the first one will be a phone consultation, the second is an appointment.

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 

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.