Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Post Menopausal Bleeding - Suspected Endometrial Cancer

MidsomerMadness
Posted by

Hello

I am besides myself with worry.  I had an episode of PMB back in January, just a pinky discharge when I wiped.  Rang to make GP appointment and they sent me to see the nurse practitioner.  She had a look, took a swab, thought it was trush so prescribed medication for that.  The treatment seemed to work and I thought nothing more of it

Fast forward to March and it happened again, made appointment with female GP, who tried to do an examination but was not very gentle and it hurt, three attempts with different sized implements and she gave up, said she’d refer me for scans and to see gynaecologist.  Said I should hear within 2 weeks,  Scan appointment came for 2 weeks time and hospital appointment for 3.5 weeks time.  My husband by coincidence also had a scan booked the week before mine so we swapped.  External and internal ultrasound done and sonographer said everything looked fine apart from a slightly thickened womb lining but nothing else flagged up.  This helped put my mind at risk, got home to find my hospital appointment had been cancelled because my BMI was over 40 (private hospital doing NHS work) surgery remade me an appointment at main NHS hospital but it was another 1.5 weeks after the original one. Surgery said GP had reviewed scan and that it came back green and not red so just to attend appointment at hospital.

in the interim I found plenty of evidence which shows I should have been referred under the 2 week fast track, I’m 55, I’m overweight, I’ve PCOS and I’ve never had any children..all put me at higher risk of endometrial cancer.

i rang hospital and spoke to consultant’s Secretary so said my appointment was for general gynea clinic and if my womb lining was thickened he would more than likely refer me to hysteroscopy clinic which would take another 3 weeks for appointment.

as I have still to see consultant (appointment was for this coming Wednesday) I went back to my surgery and said it was not really acceptable that I’d been kept waiting so long and would now have a further wait.  Anyway they’ve now referred me as 2 week fast track and hospital rang on Friday to say they are cancelling my appointment on Wednesday and will contact me on Monday with an appointment, my file at that time was with the consultant..

i suspect by the time I actually see anyone it will be 6 weeks since my GP appointment (not forgetting they should have referred me in January).

I googled and googled and everything came up as stacked against me, last week the pink discharge returned and I just know they are going to find something horrible.

as my GP couldn’t do an internal examination I’m suspecting a hysteroscopy with just a local anaesthetic probably won’t be achieved although appreciate they do these things all the time and will hopefully be better experience than others my clumsy GP.

We are due to go on holiday in just over 4 weeks, my insurance company have said they will cover me even though it’s an undiagnosed condition so that’s one positive...but I’m still thinking we will have to cancel if my fears are confirmed, although it’s quite possible that test biopsy results might not even be back by then.

all I do is think about what is to come, I’m scared and upset and no amount of people telling me it probably won’t be anything to worry about I just can’t stop worrying.

Lass
Posted by

Heya,

First thing is, stop googling things. If you Google any symptom anyone has ever had, you will find sites saying it could be cancer. 9 times out of 10, it isn't. Sometimes, it's just a common cold. So Google is not your friend right now.

Your GP hasn't tried to do the same thing a hysteroscopy tries to do, and it's rarely done with local anaesthetic. Usually it's just paracetamol and ibuprofen you take an hour before your appointment time. The GP can check up to the cervix, the hysteroscopy goes beyond the cervix to look into the womb. This needs a camera, and can't just be eyeballed, and generally GP practices don't have that sort of kit.

I'm not sure why your Wed appointment has been cancelled. Yes you'll see someone and then be referred on, but exactly the same thing will probably happen after you see a gynae. So it seems like the meddling from the GP has actually set you back some more.

From my experience, I'd say your holiday is safe. By the time you see the gynae, then see the hysteroscopy team, that'll either be right before your holiday, or the hysteroscopy may even be after. It then takes a couple of weeks for the results to come back again, and they'll either call, write a letter, or you'll get an appointment to go in and get them face to face - it just depends on how your hospital works.

So concentrate on the holiday to distract yourself, clean out a cupboard, do the garden, whatever it takes to take your mind off the wait for appointments. You're in the system, they're investigating, and worrying isn't going to change anything other than the wait - and not for the better. So distraction is def the key!

Lass

XX

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Lizjane
Posted by

Hi, I'm not going to tell you not to worry because it's probably nothing. What I am going to tell you is don't worry that things are not moving quickly enough. IF you have womb cancer, and you may not, it is usually slow to grow and usually contained in the womb. My gynae consultant said that if you have to get cancer, womb cancer is the best one to get. 

I had Stage 1A womb cancer two years ago, and thanks to my totally inefficient GP surgery it took five and half months from first appointment to my eventual hysterectomy. Even after all that time it was still at first stage, all completely removed by the hysterectomy and I have had no problems since. I am on the 5 year follow up phase. 

Don't panic, even if the hysteroscopy shows there is a problem it can be dealt with, and it will be dealt with. The gynaecologists know what they are doing and they will give you the best advice. 

Good luck, and best wishes for whatever happens next. 

MidsomerMadness
Posted by

My appointment was cancelled on Wednesday because they said they consultant would refer me most likely for a hysteroscopy and that appointment would take at least three weeks from seeing consultant.  Under the 2 week fast track I will get that hysteroscopy appointment quicker, so thats their reasoning...I’m just so stressed and I know that stressing and worrying won’t make the outcome any different..my sister lives abroad and I have no friends locally so I’m just finding everything so difficult..my husband is his usual “no point worrying until we know the outcome”

hysteria53
Posted by

Hiya Midsomer, firstly I'm going to second what Lass said about not googling.  It's a rule here!  It's just about the worst thing you can do when you're waiting and wondering.  The scan you had would have shown up any polyps, fibroids or a thickened lining.  Although you say your lining was slightly thickened it sounds as though it wasn't significant which is supported by it coming back green.  And  I guess this is why the medics have taken their feet off the pedal, somto speak.  I'm not a medic but I know enough to know your scan was not suggestive of cancer.  Nonetheless, a hysteroscopy will put your mind at rest..  endometrial cancer tends to be slow growing - indolent was the word my gynaecologist used.  So try not to be too anxious.  I used to find smear tests so terribly painful that I actually gave up going.  So I was dreading my womb biopsy (similar to hysteroscopy but without the camera).  In the event although it was not the most comfortable experience it was quite bearable.  I think this is because a gynaecologist has so much more experience of doing these things than a gp or even practice nurse has.  I know your mind won't be completely at rest till youre sure but hope you can get your worries in perspective.  The discharge you're experiencing could be due to various things and hopefully you'll get some answers soon.   In the very unlikely event that it is caused by cancer, youncan be reassured that when caught early, as it usually is, it is be really completely curable.  But many ladies visit this group feeling very anxious like you and find that they do not have cancer.  Xx

MidsomerMadness
Posted by

My womb lining was 6mm, the cut off is 5mm so I was only just outside but because of my PCOS, my weight  and never having had children I’m at a higher risk..I was happy enough after the scan but then read that even if scan looks clear cancer can’t be ruled out until you’ve had a biopsy and of course my head went into overdrive again..I’m a born worrier which also doesn’t help and having lost my mum to cancer just 8 weeks after she was diagnosed there is always that nagging doubt at the back of my mind...I know ultrasounds and TVUS can occasionally miss things like polyps etc so it could be one of those causing the problem..who knows!

MidsomerMadness
Posted by

And I’m most annoyed that I couldn’t go to the nice hospital, because my BMI is too high, ironic because since February I’ve been on a caloried controlled eating plan and have lost over 2 stone, onlneeded to lose another half stone and I’d have been allowed to go there, they did my new knees (even though I was overweight) but sadly their admissions policy changed at the end of last year so thecouldn’t see me

Meljb
Posted by

Hi I know how you are feeling I am 43 been having very heavy outbreaks of bleeding,had a scan everything looked ok just a slight thickning womb,gp referral to gynagolgist who sent me for a urgent refferal for hystercopy which it took 6 weeks till I had it done ,got no polops which my doctor said I put money on it that's what I got they took some biopsys of my womb now waiting for results never been so scared I have totally fried my brains going on Google .

Meljb
MidsomerMadness
Posted by

I’m hoping mine won’t take another six weeks but it wouldn’t surprise me.  I hope you get your results soon. I’m now thinking every ache and pain means things are spreading and getting worse, I suffer from anxiety at the best of times...many years ago I was convinced I had a brain tumour because of dreadful headaches, I had panic attacks when I went out and every part of me hurt....it was stress and the headaches were cured through chewing gum, I just hope this time there is an explanation as well..

Meljb
Posted by

I suffer from anxiety to so I have got myself in a right frenzy been in alot of pain ,and burping alot with lump in throat for a couple of months doctor as give me medication for it don't seem to be calming it down so I am getting really worried about that to , waiting for results is driving me crazy but the worse thing for me is when I got to open that letter hope you get a appointment very soon x

Meljb
MidsomerMadness
Posted by

I have just heard from the hospital and I’m booked in for a hysteroscopy next Friday afternoon, just within the 2 weeks (when you take out the two days off for Easter), not looking forward to it and I will be glad when it’s over, then another wait for results.

hysteria53
Posted by

hi Midsomer, its great news that you have your appointment. Try to enjoy Easter and not to worry too much about the procedure the following Friday. I've got my money on your result being clear of cancer. If not we will be here to support you. Whatever happens you will feel better once you have answers, I can promise you that. All of us here can vouch for the waiting for results being the absolute pits. If you can, the best thing is to keep busy and do things you enjoy whilst you wait. Xxx

MidsomerMadness
Posted by

I appreciate the time people have taken to try and calm my nerves with their kind posts.  I admit I’m really scared but hoping that by having a chat with the consultant and knowing the biopsy will be out the way (bit worried about that as never had children and have read it’s easier if you have) at least something constructive is happening.

i will update when I have more news.

Lass
Posted by

I personally think it's more to do with the skill of your nurse than whatever is going on with your body. I've never had kids and I had no issues with my hysteroscopy at all. Just take the paracetamol and ibuprofen an hour before your appointment time, and I know it's MUCH easier said than done, but you must relax while they are inserting everything and looking around. Tense muscles make it harder for them to work, and makes it more painful for you. So whatever you need to do to relax just about everything you can from your chest to your thighs, do it.

Also, I just want you to be prepared, you might not see a consultant at your hysteroscopy. Mine have all been done by a specialist nurse because it's a hysteroscopy clinic and not a general gynae clinic. It's a separate appointment to see a consultant. Your hospital may be different, but I just wanted to give you the heads up in case yours is like mine.

Lass

XX

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

MidsomerMadness
Posted by

The nice man who has been keeping to get me my appointment said I would see the consultant first and then the examination/procedure, I have no idea if the consultant is doing the procedure or a nurse (hoping it’s the latter if I’m truthful but why I worry about that I have no idea as these things are like baking a cake to gynaecologists are they!) as long as they aren’t as heavy handed as the female GP was when she was trying to get a look then I will be happy...if I’d have been a youngster having an internal examination for the first time I’d never have gone back.