RE : Endometrial Cancer

Hi Cariad1228

Welcome to the Womb group.

I am sorry to hear of your diagnosis of endometrial cancer and subsequent surgery. I hope that you are recovering well from the hysterectomy.

Staging and grading can be confusing and it is naturally worrying when you are expecting it to be stage 1 and it has changed. Before the surgery they are able to give you a provisional stage and grade from your biopsy results but it is only after the surgery, when everything is examined in more detail that the actual staging and grading is confirmed. So its not normally that all of a sudden its got worse- more that the have now got all the detail to be sure - if that makes sense. 

A CT scan would be normal and will help plan the treatment.

So basically Grade 1 is where the cancer cells are only slightly changed from normal cells.

Grade 2 is where there is more change.

Grade 3 is where the cells look very different and this is the more aggressive grade. So for grade you are in the middle.

Grades are important as they help work out how likely the cancer could be to spread/come back in the future and higher grades are normally offered some adjuvant treatment after the surgery. Adjuvant means that although the cancer has been removed- they want to reduce the chances of a recurrence. 

Chemo is to reduce the chance of whole body recurrence and radiotherapy is to reduce the chance of local recurrence. And basically to mop up any stray tiny cells that might have been left behind after surgery. I had both treatments. 

With staging they try to predict it from the preop scan but sometimes when they do the surgery they can find a few cells have moved elsewhere. 

Stage 1 means that the cancer has been contained within the womb

Stage 2 means that some cancer cells have been found in the cervix.

Stage 3 is locally advanced cancer- so it means that some cells have escaped the womb- but it is still all in the pelvis- so it could be that a few cells were found on the outer surface of the womb, fallopian tubes or ovaries or that a few cells were found around vagina or in the tissues around the womb. 

Stage 4 is where cancer has spread further afield. 

Stage 3 is treatable cancer and when you have your appointment they will talk through the treatment that they feel is best needed. My chemo regime was carboplatin and paclitaxel and this seems to be the one that most ladies are offered. It is done in cycles- I had 4 x 21 day cycles. So day 1 I was in hospital for the day and then home same day and 20 days to recover. For radiotherapy I had 25 sessions. Some ladies are offered brachytherapy but I did not have that as no cells were found in my cervix. 

It sounds as if they believed yours was all contained but during the surgery there were some cells that managed to escape your womb - these cells appear to be still local and the CT scan is to double check this. So the further treatment would be to mop up any stray cells that could have been left behind and thus to try to prevent any recurrence in the future. 

Hope this is not too confusing. There is the Support Line that you are welcome to call and one of the nurses would be able to answer anything more medical. 

In the meantime if there is anything you want to ask, please do so. I had both treatments and although at times they were not easy, they were doable. My surgery was April 2022 and followed by chemo and the radiotherapy. I am now on check ups every 3 months and still clear. So there is very much hope in these situations. I do understand the shock when the results come back not quite as you were expecting.

Jane

Hi Cariad1228

Welcome to the group no one wants to join!  Just to add though, it’s a lovely group of ladies, who are very helpful.

I was also diagnosed with stage 3a grade 2 endometrial cancer, after my hysterectomy.  I was stage 3, as 1mm of cancer was found in my Fallopian tube after surgery.  I know it comes as a massive shock when you are diagnosed, and at the time I felt it seemed worse to be stage 3, however it is certainly treatable.  I had the same treatment as Jane2511 had, 4 sessions of chemotherapy and 25 external radiotherapy.  I finished my treatment in June this year, and feel really good, the treatment can be tough, but you are well looked after, by all our nurses and doctors.

Try and take one day at a time and try not to overthink things, as I know everyone’s mind can work overtime and think too far ahead ( I know it is easier said then done!). During my treatment I signed up to do the Mighty Hike half marathon for McMillan, at the time it seemed an age away, and now I’ll be doing it in less than a months time and all my treatment is finished.  So there is light at the end of the tunnel, just remember that and everyone on the forum are here and will help you if you want to ask anything at all.  

Lots of luck and best wishes

Ange

Hi I can understand the confusion and shock - I started off two weeks ago with Grade 1 and prob stage 1, then moved to stage1B and possibly stage 3 a week later after the MRI and now I have a chest infection which they seem to be concerned about….i havent had my hysterectomy yet. So I get it totally - it feels like we are not in control and on a slippery slope but as others have said, Stage 3 is still treatable. I hope you had a great team around you x

Thank you for your reply , seen consultant again today I was able to take in so much more and asked my  questions .. he explained my Stage , type and grade etc .. feeling alot more positive today .. 

Am pleased it went well and that you are feeling more positive.

Hi Jane, you have explained that perfectly. I am the same Cariad1228. I was mortified when I got my results and I was then a Stage 3. It felt like they kept moving the goal posts. I found when I was diagnosed with 3a it would be easier to break things down into 'Hurdles' and take one at a time. I called my Hysterectomy Hurdle 1, my 4 x chemo Hurdle 2, I start my Hurdle 3 Radiotherapy on 30/9/24 and my final Hurdle (for treatment) is Hurdle 4 which will be my Brachytherapy. I have found it much easier to concentrate on one hurdle at a time and not even look into hurdles in the future. Its really helped and although I know I have other hurdles Ive blocked them out of my mind. You get so much information that it all becomes overwhelming and you get in a right state. One hurdle at a time has helped me massively. Thanks for your support Jane, you have been with me all through my journey so far and its been really helpful. I know if Im feeling a bit apprehensive about anything I can come on here, ask the question and go away feeling much more relaxed about it all so Thank you x

One step at a time has helped me the whole way through. If you look too far ahead it can feel overwhelming. 

Anything you need to ask or that is bothering you, if you post on here there is always someone who will help. We have been there and know what it is like 

Thats what I like about this forum, I asked last week about the micro enemas and after my planning scan yesterday I realised I had nothing to worry about as you had said they were easy to administer. My radiotherapy starts 30/9/24 and I know in my heart if there is anything I am worried about, I can come on here and get brilliant support so thank you. 

Like you say, everyone is so helpful and have been through it themselves which really helps.