Shock diagnosis

Welcome to the group Matmar and to the emotional roller coaster ride! All of us here have either been through the experience or are going through it, at various different stages, so we can support you. Feel free to ask any questions you like! Click on my name if you’d like to read my story. The MRI will give a predicted stage -  the actual stage will be confirmed once you’ve had the op and the histology results. Have you been given the contact details for your CNS? 

Hello Matmar

Welcome to the Online Community and the Womb group. I am sorry to hear that you have had a diagnosis of endometrial cancer. Being diagnosed is a worrying time and there are lots of lovely ladies on here who will be able to offer you support and share their stories with you.

If you want to see my journey then click on my name and my profile will come up. My diagnosis was in March 2022 and I had surgery in April 2022 and this was followed up with chemotherapy and radiotherapy. I am now on 12 weekly check ups.

The pipelle biopsy will give the doctors a lot of valuable information but you are right in that it is normally followed up with a scan. I had a CT scan but some people may have an MRI- I am not sure why really- but it may just be different hospitals in different areas. With the CT mine confirmed that my cancer was likely to be just in my womb and it had not spread elsewhere. 

It is very normal to feel a bit all over the place and to want some more information. Normally once diagnosed you will be given a Cancer Nurse Specialist who you can ask questions to and generally get support from. With me it was a team of CNS. 

After my scan I was called in for an appointment to discuss the treatment options with the consultant and surgery happened soon after that. Once your scan is done and they have looked at it I would imagine similar will happen for you and then you will know a lot more. The waiting is quite hard but things started moving quickly for me once the scan was done.

I will pop a link here to some information that I found helpful and it will probably answer a lot of your questions- however if there is anything else that you need or want to ask - then please do so.

Womb cancer booklet | Macmillan Cancer Support

If you feel like talking things through with someone would help- then please do give the Support Line a call (the number is at the bottom of this)- they are very used to supporting people who have just had a diagnosis and will understand how you are feeling. They are lovely on there too. 

Hope this helps a bit

Jane

Thank you MarmiteFan59  - I really appreciate your offer of support and hope you’re OK, so brilliant to have this community. 

l saw the Gynecology consultant yesterday and shared my news (I went private to get a diagnosis as knew something was wrong) they have arranged a CT scan and MRI next week. I am scared and shocked but glad I’m on the right track to treatment. The consultant also confirmed I should have a hysterectomy by mid December.

I’m finding it’s telling the loved ones the hardest. I feel I’m breaking their heart - but everyone is being really supportive. I’m trying to remain an positive as possible.

I don’t have a CNS as haven’t seen an oncology consultant yet. I guess I’ll see them next week.

Take care and you x

Thank you jane2511  - hope you’re ok and feel so reassured to have this community. I appreciate you signposting me to booklet and helpline - all sounds really useful. Thank you.

It’s all sinking in for me and feel so nervous but at least I know I’ll have a better idea of it all next week.

have a lovely weekend and thank you x

I am just like you at the moment it’s been a week since my diagnosis had my MRI yesterday and I’m just numb can’t seem to retain facts at the moment I’ve not even told my family yet.

Hi Jammiedodger1 It’s such a nerve-racking time, I’m trying to keep as busy as possible and also keep reminding myself that I’m now being cared for by a team of experts who will do their best for me. I’m on the right track.

I told my family and they were shocked but very supportive- if you haven’t already, ask the doctor who diagnosed you to refer you to your Cancer Specialist Nurse (CNS).

I was referred to my CNS last week and she was amazing at helping me navigate all my worries and concerns and also told me she is there for me, she also helped with my questions about how to share the news about my diagnosis with loved ones.

sending you my best wishes x

Hi Jammiedodger1, welcome to the group and to this emotional rollercoaster ride. There’s lots of lovely ladies here who have either already been through it all or who are going through it right now and we are here to support you. I was diagnosed two years ago and had my op and treatment last year. I told my husband but didn’t tell my (adult) children until after I had my staging MRI results as I didn’t see the point worrying them till I knew what was what, I relied heavily on my CNS, often calling them 2-3 times a week and I’d encourage you to connect with yours and benefit from the support they can give. It’s tough when all the emotions and thoughts are swirling around in your head, but they will settle and you will find a way through. Feel free to ask any questions you need to either here or in any new thread of your own that you might start. 

Hi 

I am one year to the month free of breast cancer after successful treatment today I’ve found out I have endometrial cancer I’m in total shock to find myself on the cancer path again struggling to understand a different type of cancer and being so scared I’ve been to,d it’s the fast growing type and I’m awaiting a CT scan then hysterectomy is planned Whilst the consultant says so far there is nothing to suggest it’s gone outside of  the womb I know enough to know no one knows that only the scan will tell 

I built myself up into such a frenzy about todays appointment and now I have to prepare for that awful wait and build up again for the scan results 

It’s now at 1.30 am I’m at my most terrified and there is , understandably no one there How does anyone cope with this 

I have loads of friends who always say I’m  here for you but it doesn’t stop me feeling so alone in the middle of the night 

how do you cope with waits for results ?

how do you cope with the feeling of being so alone especially during those horrible wakeful hours in the middle of the night 

Hello Scared Bunny

I am so sorry that you have been diagnosed with endometrial cancer, after having breast cancer. It must be really hard to process and it is totally normal to feel scared and all over the place.

I had an aggressive type in 2022. If you click on my name you will see my journey.

I am always the same before an appointment and never sleep well. I do understand the feeling alone in the middle of the night- however supportive family and friends are- it is still you that is dealing with it. 

It is reassuring that the consultant believes that it is contained and although they can not be 100 % sure until you have the scan- they really are the experts and deal with this everyday. I tried to think of it as I was in the best hands possible, I put my trust in the doctors and knew that whatever showed up in the scans- there really was nothing I could do about it and I tried to keep as busy as I could. I would go for walks outside. Meet with friends for coffee, watch tv- anything to keep busy. 

I found the waiting was worse that the actual finding out. Once my scans and other tests were done, I knew what I was dealing with and had a plan of action. 

If you feel that talking things through would help, then please do give the Support Line a call. The number is below and they are lovely on there. 

I hope that your appointment goes ok today- let us know how you get on. In the meantime if there is anything that you need, please do ask.

Jane

Hi I am new to all this so please forgive me when reading your experience all I want to do is grab your hand so we could face this together I’ve just had my CT scan yesterday in for surgery on Tuesday if this helps at all I find that YouTube videos help me sleep there is one that does white noise that blacks out the screen or sometimes I listen to stories there is some great channels with all different genres and best of all they are free. I hope that helps you getting some sleep xx sleep tight