Returning to group

Hello Carry

Sorry to see that you have had a recurrence of your endometrial cancer. I can understand that this is a worrying time for you and that you need more information to enable you to make choices. 

A prognosis for hormone therapy is something that really only your consultant/doctors can give you an idea about.

We are not medically trained and do not know all your medical details but there are ladies on here that may have had the same treatments and be able to tell you how they found them and what they involved. 

When I was deciding about treatments I found it helpful to make a list of questions and then took it to my consultant after my tests were completed. I used to find otherwise my mind would go blank. Have you a CNS that you could call to discuss the different treatments?

There is an Ask the Nurse section on here that you might find helpful if you prefer to get further information about the possible treatments you may be offered. 

Hope that you are able to have the rest of your scans quickly and are able to move forward with your treatment- which ever one you choose. 

Good Luck

Jane

Thanks Jane

yes, I have a CNS, but she is rather elusive. I’m a retired ICU sister, so have lots of questions and find all the waiting with not knowing what’s going on is the hardest bit. I might ask the nurse section on here, but as the variables are so wide, I might have to just wait again.

Thanks again, Carry

Hi Carry 

I don’t have any experience of hormone therapy, but I had a total pelvic exenteration more than 3 years ago for recurrent cervical cancer. If you are considering this as an option, I’m happy to help answer any questions I can based on my own experience. 

Sarah xx

I agree- the waiting is the hardest part and once I had all the information and a treatment plan in place it did feel easier.

I hope you don't need to wait too long. 

Jane

Hi Carry,

I’ve been living with stage 3/grade 1 incurable endometrial cancer for the last 5 yrs, so I’ve had to deal with a few recurrences along the way (all detailed in my bio so I won’t bore you with all the details).

Since my situation wasn’t straightforward, I was referred to the Royal Marsden for a 2nd opinion back in 2018. On their recommendation, I started taking Megace (Megestrol) in December 2018 and I had a great response to it. The residual incurable mass in my right pelvic wall responded well to the hormone inhibitor and didn’t grow for about 2.5 yrs. When the mass started to grow again, I was switched over to Anastrozole. Unfortunately this inhibitor didn’t work either, so I knew it was treatment/surgery time again.

If it helps you, my ER assay was 5 out of 8. The higher your ER assay, the better chance you’ll have of your cancer responding to a hormone inhibitor. Whilst I was taking the hormone inhibitors, I was having a quarterly chest/abdominal/pelvic CT scans, along with blood tests to monitor the effectiveness of the treatment. 

Just on another note, I had further debulking surgery in February last year (had my rectum and a bit of my lower bowel removed) and I’m now living with a permanent colostomy. I appreciate I’m only living with one stoma but I’m happy to answer any questions that you may have.

I wish you all the luck in the world with your future treatment. Look after yourself.

Liz xx

Thanks Liz - sounds like you’ve been through the mill a bit. I hope all goes well with you and may take you up on your offer if I head down that route.