Endometrial cancer

Dear Cariad1228,

Thank you for getting in touch with us at Macmillan Cancer Support. My name is Penelope and I am one of the Cancer Information Nurse Specialists. I can see you have joined the womb cancer forum and I hope that you are finding the online community helpful.

I am sorry to hear about your diagnosis of endometrial (womb) cancer. I can’t imagine how difficult it must have been to hear the stage of the cancer had changed from a stage 1 to a stage 3, grade 2 following your surgery. It is understandable that you are feeling so shocked and distressed.

It is good that you have arranged another appointment with the consultant as it must have been impossible to take in any more information after you were told the results following surgery.

As we are not part of the NHS and do not have access to any medical records, we cannot say why the staging information you were given has changed. As you may know cancer staging and grading helps the cancer team to identify the extent of a cancer and plan treatment accordingly. The stage of a cancer describes its size and whether it has spread from where it started. The grade of a cancer describes how abnormal the cancer cells are, compared to healthy cells. This can help the doctor understand how quickly a cancer may grow, or how likely it is to spread.

Sometimes the grade given to a cancer after a biopsy can change following surgery. This may be because after surgery there is more tissue for the pathologist to look at under the microscope. This can give them more detailed information about the cancer. Most of the time staging is done before surgery using imaging scans such as CT, PET–CT or MRI. Sometimes, the stage is revised after surgery. This could be because the surgery to remove the cancer allows the surgeon to see the tissue in more detail than scans can show. All tissue and fluids removed during surgery are examined for cancer cells by a pathologist to confirm the stage and grade of the cancer. Sometimes at this point the stage or grade may be identified as different to the original assessment. There is also the possibility that the cancer may have grown in size whilst you were waiting for surgery, but changes in stage can happen for the reasons mentioned above as well so this is not the only explanation.

You asked what questions you should be asking. Our information questions to ask your healthcare team may be helpful. There may be other specific questions that you ask about the change in the staging of the cancer. You could also ask about the extent of the cancer found during surgery as stage 3 womb cancer may be categorised further to 3A, 3B or 3C. This is explained more in the information from Cancer Research UK stage 3 womb cancer, but please do ask your consultant or lead nurse as staging and grading can be complex, and as the information in the link mentions the staging system has recently changed.  

I am so sorry to hear that all you can think just now is whether you are going to die. It is natural to think of the worst-case scenario following your recent appointment, but that does not mean that it is true. Whilst we do not have any clinical information to be able to comment on your prognosis, what we can say is that for stage 3 womb cancer further treatment is available. The aim of this treatment will be to achieve the best outcome possible. I hope that you are able to get the answers that you need from your consultant to give you hope for the future.

In the meantime, there are things you can do to manage your distress and maximise your health and well-being at this really difficult time. If you would like to talk things through you can speak to one of the nurses on the Macmillan Support Line. We are available 8am to 8pm. If you are eligible you could consider our free counselling for further support. You can sign up online or via the support line.

When everything feels so uncertain some people find it helpful to focus on their general well being and prepare for further treatment. There are many ways to do this, and you will know what is right for you. Here are a couple of links if you are interested.  This link about prehabilitation is from a Scottish website but is available online wherever you are in the country. There is also an organisation called Penny Brohn who offer an online treatment support programme as well as other wellbeing services.

I imagine you are still recovering from surgery and had a huge shock at your recent appointment so do get further support where you can. You can talk to us on the support line or check out other support in your area.

To speak to the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm).

Take care and best wishes,

Penelope

Cancer Information Nurse Specialist

Ref/ DS

Thank you for your reply .. went back to see consultant today feeling much more positive..