SO SO Scared

Dear Lodge Lady. I’m sorry I don’t know the answers to your questions, but I felt that I couldn’t just ‘read and run!’ What an awful lot for you to take on and process! There are so many lovely ladies on this site who have helped me through my recent diagnosis and treatment of endometrial cancer. I hope someone will be able to answer your questions. In the meantime, although you feel alone, there is a huge community on here who will support you. I’m wondering if you have told any of your friends or family? I know different people manage this difficult time in different ways….. I told everybody! As a result I felt massively supported both emotionally and practically after my hysterectomy. Sending you a virtual hug! X 

Thank you so much sweetie…just you reaching out is making me cry so so much! I have told a lot of my friends and I’ve just been on “Chat” to a MacMillan nurse who was so supportive!

She did say that the fact it’s doubled in size in two weeks may be more indicative of a fibroid as they are fluid filled but that’s me just clinging to hope I guess! 

Im just hoping at the hysteroscopy tomorrow I’ll have a slightly better idea of prognosis? 
Thanks you so much x x x

Could I ask you about your symptoms…apart from heavy periods and prolonged periods and more aches I don’t have any other symptoms.

its so hard to differentiate between anything as when you Google or ask anyone I’ve just always been told yes that’s normal you’re perimenopausal x

Hi LodgeLady

Bless you you have certainly been through a lot recently. I think we can all empathise with how scary waiting for tests and results is. Hopefully when you have your hysteroscopy tomorrow you will be given a better idea of what’s going on. There are other reasons for heavy bleeding it’s not always cancer. Try not to assume the worse. In my case I was post menopausal with extremely heavy bleeding and as well as the cancer I had 11 fibroids so lots of lumps. Try not to google it doesn’t really help it can just make the fear worse. There are lots of lovely ladies in this group so feel free to ask any questions there is always someone who will have gone through something similar.

Linda xx

Hi Lodge Lady

Welcome to the Womb group.

I am so sorry that you have got all of this going on. It must be really scary. 

The hysteroscopy would be normal in these circumstances as they need to have a closer look inside and they will likely take a biopsy at the same time. It is only a biopsy that can say for sure whether any cancer is or is not present.

The change in thickness of your endometrium from the first scan to the second scan would be expected if you are still having periods. 

Serum HCG is the pregnancy hormone. 

CA125 is a marker that is useful when diagnosing or ruling out ovarian cancer in particular. It is also useful in endometrial cancer. I was told anything under 35 is normal. However there can be other reasons why it can be raised such as infection.

Both blood tests are useful but do not on their own diagnose or rule out cancer. 

1) Most endometrial cancers tend to be slow growing. There are higher grade ones but I am not sure how fast these would grow.

2) There can be different endometrial growths- polyps are one type and they are not uncommon. There are also benign growths known as fibroids. They have found something that is standing out and that is what they are saying on the radiology report. There is something but they can not be sure what it is. So they need a closer look. 

3) My hysterectomy was a month after my bleed. There is some variation between hospitals. 

There are NICE guidelines that can be found online but I had a look and they are pretty in depth. Most ladies are offered a hysterectomy as a first line treatment. There are many ladies on here who have been overweight who have had the surgery. Before any surgery they look at the person as a whole and medical history etc to make sure that surgery is safe. 

What I would expect to happen is that after the hysteroscopy/biopsy - there should be an answer as to whether or not there is any cancer present.

If there is none- then treatment would depend on what is there.

If cancer is found then I would expect you to have a CT scan to stage the cancer and to see if there is any spread. The biopsy would provide a grade of cancer. When (and only if cancer is there) they have the stage and grade they look at planning the best treatment. 

My hysterectomy was done laparoscopically- it was straightforward, I had little pain, in hospital one night and recovered quickly. 

I hope this helps a bit. I hope the hysteroscopy goes ok for you tomorrow.

We do have a Support Line that you can call if you feel talking things through would help. It is totally normal to feel as you do in these circumstances- I know I felt similar myself. Hopefully you will not have to wait too long to get the results back from your hysteroscopy (mine were about a week). Once you know what you are dealing with, then treatment can be planned. I sort of felt better once I actually knew what I was dealing with and what I had to do. It was all the uncertainty and waiting that was hard. 

Jane

Hi Lodge Lady, it's all so scary but there are some lovely ladies on here who will help you through whatever lies ahead. The waiting and not knowing is the worse thing as I have experienced but the professionals are very much on the ball and I've found very quick at sorting treatment once you have the diagnosis. I hope you don't have to wait long. Sending lots of positive thoughts xx

Hi lodge lady. My symptoms were the tiniest amount of post menopausal bleeding. I went straight to my GP and she put me on the fast track pathway. I had an internal scan which showed a thickened endometrial lining of 22mm. I had a hysteroscopy and MRI scan and was diagnosed with grade 1a endometrial cancer. I had a full hysterectomy 3 weeks later. I recovered quickly and I don’t need any more treatment. I am beyond grateful to our NHS. The waiting was the worst part. I learnt to take each next step as it came and I learnt to trust the marvellous doctors who I saw. I too was looking for answers on Google at first, but Google doesn’t have your history and is quite out of date.You will be well looked after and once you have some definite answers and a plan of treatment, I promise you, you will feel so much better. Take care xx 

Thank you so much for taking the time to reply x 

Jane thank you so much for your detailed reply I’m so so grateful for your virtual kindness! Roll on tomorrow and some more information! Thank goodness for my beloved dog who hasn’t left my side and who I hug all night long x x. 

Hi Lodge Lady,

I can relate to so much of what you have said.  When I was 27 I came off the pill, went 3 months without a period and was pronounced by my GP of being pregnant. I then had a bleed at 4 months, and that was pronounced as a miscarriage. It was actually my mum who said she thought I was never pregnant!!! (No water tests in those days). I really thought I was going insane and changed doctors! 

It was that experience that helped me at 72 years old. Long past the menopause I had a slight bleed but knew straight away it wasn't right. After a visit to the doctor, who told me what he feared, I was referred to the hospital. Sure enough, I had cancer, caught very early and I am now 8 years post operation with no more trouble. I had keyhole surgery and recovered quickly. You will get through this, and bleeds can mean many things. By the way, they found a fibroid in there that I knew nothing about. Apparently they shrink after the menopause!! Good luck.