Hello

Hello Chipmunk1

Welcome to the Online Community and the Womb group.

I am sorry to hear of your diagnosis of endometrial cancer. I remember how tough it was waiting for all the test/scan results to come back. Hopefully you should hear back soon about the staging.

Grade 1 refers to the type of cancer cells that have been found and Grade 1 is the least aggressive and less likely to spread. The stage will be determined provisionally by the scans and it will show where the cancer is. From that, treatment can be decided. 

For the earliest stage and grade then hormonal treatment can be an option and it sounds like they are considering it as apposed to surgery. It can also be used where surgery would prove more difficult.  I will pop a link with some info.

Hormonal therapy for womb cancer | Macmillan Cancer Support

It is hard waiting for the results and I can remember just wanting to know and to get on with treatment. There are lots of lovely ladies on here who will understand and will want to offer support. if you have any questions please do not be afraid to ask. 

We do have the Support Line that you are welcome to call if you feel like talking things through would help.

Jane

thank you for your reply. The worst part for me is that this was an incidental finding, but then checking back on scan reports from February it was noted then that I had endometrial thickening needing gynae follow up, again it was an incidental finding - it was just never actioned. So this has been sitting there at least 10mths before it was investigated. I know its low grade but I'm just worried that it might have spread in that time.

I am so relieved to find out that I am stage 1a and that hysterectomy should be all that is needed. Was hoping for just a mirena but I suppose is just better to get everything removed so there is no more doubt?

Thats good that you are stage 1A and will only need the hysterectomy. They normally only use the mirena coil where surgery is not possible. Personally I would prefer the surgery and to know the cancer has been removed than to have a hormonal treatment that may in some cases not be enough and to potentially have to have repeat biopsies/tests. 

My hysterectomy was April 2022 and was very straightforward. I had little pain and was home the next day. I recovered quickly. 

Good Luck with the op

Thank you. I'm afraid the cancer is the least of my worries at the minute but it may just have provided the answer to what caused my blood clot last year from what I have been reading. I'm a bit confused because when I saw the gynae consultant he was recommending mirena unless I understood that bit wrong? And seemed to be a bit reluctant re surgery as I had major abdominal surgery earlier last year. I suppose I will find out tomorrow at appt. Thanks for you reply

I was diagnosed with stage 1a EC some 6 months ago and have had a Mirena coil in as I was not suitable for surgery at the time. I've had no problems with the coil and my first 4 month follow-up is in Feb this year. I was told that the cancer had not spread over the previous months before I had the coil fitted, so it would appear that in my case the cancer is slow-growing so they weren't that worried about the time lapse between diagnosis and coil fitting. Not everyone opts for surgery and there are pros and cons, which must be discussed with your team. In the end though, it's your personal choice.

Whatever advice you get remember that it's your body and your choice. There have been some success stories on here that have indicated mirena can work for some people but it's an individual thing. Not everyone is suitable for surgery and you shouldn't feel panicked into making any decision. Trust your own instincts as well as advice given.

Thank you for your reply. Had an appointment this afternoon to discuss treatment. I had decided before going in that on the basis if I went for having everything removed it would be the end of it and something that I could strike off the list as being dealt with. Consultant has advised that isnt without risks and although might start as keyhole there is a strong possibility if he comes across adhesions from previous bowel resection would then have to convert to open laparotomy and with any surgery he would need colorectal surgeon available in case of colostomy. Add an autoimmune condition and clotting issues..... I have been advised to be open to other options. So I'm guessing now will be mirena which is what I would have gone with initially had I not been told it would be surgery

That's all good. I also have autoimmune disease - Sjogren's and Lupus. What type of autoimmune issue do you have? You don't have to answer this of course but I do understand that this can complicate things. All I can say is that having the mirena fitted wasn't as bad as I had expected. Before I had it fitted, they did a biopsy and the whole thing was very quick. It helped that I had pain relief too during the procedure, as I also have fibromyalgia! I had the local anaesthetic, plus gas & air, which helped enormously. I have a very good Nurse who does these procedures all the time and she's amazing. I hope you make a decision soon and everything goes well. Sending hugs.

APS was diagnosed but now under question. Was found when they were investigating a cause for my clots. Whatever needs to be done I'm hoping it's done soon. Many thanks for your reply it means a lot to have input from somebody who has already been through it.