Womb lining question

Hi Janet, I am no expert on this but I think thin is better!  Like you I had very few symptoms but when I contacted my gp in July this year, I was fast tracked for a vaginal scan  and biopsy . They can tell the grade at that point, I was grade one, which means the abnormal cells are not too different from ordinary cells and therefore it is likely you have been caught early. Within about three weeks of my scan I had keyhole surgery to remove womb ovaries and Fallopian tubes. I recovered very quickly, a week or two after surgery I was taking short walks on the moor! I had to wait about 2-3 weeks for my results which showed the cancer had gone more than 50% through the muscle and that meant I was classified as Stage 1b. I was offered three sessions of brachytherapy( internal radiotherapy) as a "belt and braces" treatment to lower chances of recurrence, which they have to do within a certain time after surgery, I think it’s about 10-12 weeks, not quite sure on that.  Before it was given I had an internal examination to make sure everything had healed up. So my op was on August 24, and brachytherapy started on 23October, and finished on November 3rd.  

Each hospital seems to follow different procedures, and we all seem to get treatment tailored to our individual needs.  I am just thankful that I managed to get my treatment before this second wave of Covid.  Some of the ladies on here have been having a difficult time with ops being cancelled etc.  I hope you get sorted quickly. Waiting for results is hellish, but once it’s all over you start looking forward again.

Hi Janet,

I can't remember what the exact thickness of my womb was, but the consultant said it was normal. The cancer had not gone more than half way through the muscle, so I only needed a hysterectomy via keyhole surgery. I count myself as lucky, but I had gone to the doctor as soon as I had a bleed. I think your lining changes normally when you are menstruating, so I wouldn't worry about that. I know the medicals don't seem to like thick linings.I was stage 1, but grade 2. Good luck xxxx  

Thank you for your reply.  My lining was 4.8mm and it makes me think its easier for the cells to get through or is the added thickness the cells, as you say they say it's good to have a thinner lining.  I'm 61 so 10 years post menapause.  Spotting for half a day then off to the GP I went.

Thank you so much for your very detailed reply.  Your words have made me feel much better as now I understand the different cell rule so thank you for that.  I was talking to my specialist nurse and said this cancer is not advertised as much as cervical, bowel and breast and the amount of women who would just brush it aside is scary.  If I hadnt been a nurse I would honestly just think it was my hormones etc.  I admit I hadnt heard of this cancer even after 19 years of recovery nursing. Wishing everyone well

My lining was 13.3mm, 2 years post menopausal. My medic explained that anything over 5mm is normally thought of as abnormal. I’ve not been referred to a specialist nurse though.

Hi Janetmum,

As you say, it would be easy to ignore this. My first indication was that I had what looked like a 'show'. I thought I had somehow caught myself. 3 weeks later I had a streak of blood on my underwear. It wasn't much, but after having two miscarriages when younger I was used to looking for this sort of thing. In fact, my first thought was 'Oh not again', then thought 'Don't be daft. Its not pregnancy at 72!!'

Its amazing how many women have hysterectomies for various reasons when you get talking.

It sounds as if you were caught quickly. If you read my profile I've had a lot of dealings with cancer and the one thing I've learnt  is the quicker its caught, the better.  xxxxx

Hi Janetmumof4

My ultrasound scan revealed the lining was thicker, hence the start of this journey. They then thought at the hysteroscopy/biopsy I was stage 1a grade 1 . It was after the hysterectomy histology revealed I was stage 1b (halfway through the muscle) grade 3 - high serous.

We all seem to start with the hysterectomy, but it's what histology reveals marks the treatment forward. 

I've just completed the same treatment as Jigsaw33, I finished on 5th November I also had 3 sessions of brachytherapy and was told the optimum window to do this is 6-8 weeks after the hysterectomy. A quick internal check will reveal if you're ok to go ahead. It doesn't hurt, just undignified!

All the best, Barb xx

NannyAnny Thank you for your reply.  Tragic life events are etched in your mind so can totally understand linking it to your loss all those years ago.  We experience many times in our lives when bleeding is good and bleeding is not.  My son said you might feel a loss after your op and I said I have no emotional attatchment to my womb thank you very much!  I love this forum it is one of the things which has kept me sane.

Janet x

This is the worrying thing it's the histology after the op I have to wait for now but as the waiting for the biopsy results showed it's not good to worry and it wont change the outcome.

Janet x

, you know I cannot remember what the thickness of my lining was, so maybe it’s easier to explain my story, i had been told that it was abnormally think, but it was extra complicated because i was 37 and they couldn’t be sure if that was a normal thickness for my cycle or not. I had originally gone to see my Gp because of irregular bleeding i had always been very regular so i knew straight away something was wrong. When i had the ultrasound August 2016 i was told that the lining was abnormally thick and that i had two small fibroids and the nurse was concerned about one half of the womb and said it be worth me having a smear test done as well and they would ask the consultant to review the scan. The smear revealed that my cervix was very inflamed but they didn’t find abnormal cells. The consultant reviewed the scan and saw me and don’t worry nothing to worry about as there is nothing sinister and that the pill would help, months went by I wasn’t getting better only worse the pain in my abdomen was awful, i was losing weight and suffering fatigue. I ended up back in hospital in march because i collapsed in pain 2017 to be told oh its only two small fibroids your pain is now under control  and go home we need the bed for a really sick person, i was horrified!, I also was told the gynaecologist was coming to see me for it to change to oh they will see you as an out patient now. Two weeks later i saw the consultant and I explained the weight lose, the fatigue the pain and was told they would preform a hystroscopy and have a look at the fibroids and fit the mirena coil because that can help people like me, I waited and waited getting worried the letter had gone missing anyway i get an appointment early May for it to be done without anesthetiser but the nurse abandoned it as she saw i was in far too much pain and needed it under general anaesthetic which i had two weeks later. The Doctor was horrified and actually looked like he was about to cry he was so annoyed you could see, and very apologetic about everything too, he told me he he had seen a suspicious mass and that he had taken biopsy in different areas of the womb and that my womb was full of polyps and that the mirena coil wasn't fitted as now it wasn't appropriate. By this time i more or less knew it was bad news. Sure enough I got an appointment about 7days later with the results saying it’s cancer and that i was being sent to a gynae hospital and I would need an MRI, even having that was a farse but i got it, i didn’t know the stage but was told that it appears that the cancer had spread out of the womb and that a total hysterectomy with my cervix, ovaries and tubes removed was the safest option. After my surgery i was told that it was stage 1a grade 2 and I didn’t need more treatment, i was surprised especially after what it appeared on the scan but relieved too. I have been plagued with other underlying health issues but its appears i am still cancer free which is fantastic. I hadn’t had children and in a way i feel robbed of having children of my own, i had delayed having children and I felt now tgat was a mistake but in the end its no good worrying about something you cant change.