Hi. I've just joined. I'm 54 years old and have just been diagnosed with grade 3 endometrial cancer following heavy bleeding and a hysteroscopy which found loads of polyps and a biopsy was taken. It took over 4 weeks to come back.
The story so far is that I know I've got to have a hysterectomy and that the lymph nodes will be taken but my local hospital has referred me to another hospital which is the specialist centre for this. I have the appointment booked for the end of September to discuss which surgery etc. I am already trying to contact my CNS as I have already had a CT scan with contrast of chest abdomen and thorax and a MRI of the pelvis for staging but have not been updated if anything was found or not (she said she would let me know). So far we keep missing each other and I was going to try again Monday anyway even before today happened.
Fast forward to today. I finally managed to get on to the NHS app and access my GP records - for another reason but once in, I had a good look around. I found where my cancer diagnosis is recorded on my notes and it has been recorded as "metastatic malignant neoplasm of the endometrium of the womb lining". I work for the NHS anyway (30+ years) and so know what these words mean but have had a good dig on Google (I know, not a good idea but it's the weekend). I do not have the full biopsy results and they are not on my GP records either.
The fact they have said metastatic is what is worrying me as it means that it has spread to other areas of the body. I did see one reference that it also means it can potentially spread to other areas of the body but I can't find it again, and in any case it was only a Google AI answer (rather than any definitive medical advice from a site dealing with womb cancer). For context I do not have any other cancer (as far as I know) so it has not spread from somewhere else to the womb. Also on the TV and Pelvis ultrasound the actual womb is normal and so to me means there is no evidence it has broken through, though I appreciate it can be spread by blood, lymph nodes etc. Also I am hoping that it is contained in the womb and so hoping for stage 1 or 2, but I read somewhere that metastatic cancer is often advanced and so is therefore stage 4. I reached out to my GP as soon as I realised this bleeding wasn't a normal period as it wasn't stopping and also looked different and so have not knowingly left it to give it chance to get to that stage.
I'm going out of my mind here. I've also read some quite deep medical documents online looking for an answer to my question and can't find one.
Can anyone advise if metastatic in this sense is that it has the potential to spread (ie is Google AI correct) or is it only meant in the sense that it has spread?
Thanks in advance and apologies for the long post.
Hi
Welcome to the Womb group.
I am sorry to hear that you have had a diagnosis of endometrial cancer.
The problem with the NHS app in my opinion is that it does not always give a clear picture and there is no one there to answer questions and clarify things.
So looking at what you do know.
There is a cancer.
You sort medical attention very quickly.
Your symptoms of bleeding is the most common sign of endometrial cancer yet you do not mention any other symptoms that suggest it may have become metastatic - weight loss, pain, change in bowel/bladder habits, pelvic pain etc. Of course it is possible to have some spread that has not yet caused extra symptoms but in my time on here ladies do mention things such as pelvic/back pain.
It is thought to be a grade 3. (I also had a grade 3 and although potentially more aggressive- it does not mean that it has already spread)
Going to a specialist centre is not unusual for a grade 3 cancer. There are different types of grade 3 cancer.
They have told you that the proposed surgery will involve taking lymph nodes. The purpose of this is to check for spread. If they knew that there was cancer elsewhere, why would they need to do this.
The app may not be fully accurate. They may not yet have the full results on there. The CT/MRI are for staging and without them it can not yet be confirmed if the cancer has spread. Mine actually put an adenocarcinoma of the uterine corpus- After surgery it actually came back as a carcinoma sarcoma.
My advice is to check your app again in case anything has been updated and then to give the Macmillan Support Line a call and talk to one of the nurses. They would be able to answer the medical side of your question and it would perhaps give a little reassurance, rather than keep worrying all day. Although they will not have access to your records- if you write down what has been said they will be able to talk you through what it means potentially.
Jane
