New diagnosis

Hi Rowntrees

Welcome to the Womb group.

I am sorry to hear that you have had a diagnosis of endometrial cancer.

I hope that your appointment goes well today. 

From your biopsy and the scans they should be able to give you a provisional stage and grade of cancer. For most ladies- where it is medically possible a hysterectomy is the first line treatment. For ladies who have a higher stage or grade then some follow up treatment may be recommended. This is normally based on the post op histology. Your appointment today is likely to give an idea of whether further treatment may be needed. 

My hysterectomy was done via key hole and was straightforward. I was in hospital for one night, had little pain and recovered quickly. I also had some chemotherapy and radiotherapy. I am now 3 years post treatment and doing ok. 

Do let us know how you get on today and if you have any questions please do ask. We also have the Support Line available from 8am-8pm daily if you feel like talking things through would help.

Jane

Hi I’m really sorry to hear that I was diagnosed with grade 3 endometrial cancer yesterday was told grade 3 had to have a ct scan with contrast am so scared and don’t know what to expect I’m worried about spread and I’m very overweight also I’m trying to lose weight but that doesn’t just happen overnight I’m looking for some reassurance thankyou 

Hi Lisa

Welcome to the group.

I am sorry to hear of your diagnosis yesterday. I also had a grade 3 cancer. 

After diagnosis the next normal step is a scan. Some hospitals do CT's, some do MRI's and some do both. What they are looking to do is to stage the cancer and check for any spread. This helps them find the most effective treatment for you. 

I know it can be scary to be told it is a grade 3 cancer (there are several different ones) however it is simply describing the cancer cells and how they may behave. Although a grade 3 may spread a little quicker- it doesn't necessarily mean it has. Mine was a stage 1b. 

Once the staging scan is done the results of all your tests are put to the Multi disciplinary team and they come up with a treatment plan. Usually at this point they will call you in for an appointment to discuss things and what happens next. For me once all the testing was done, things moved quickly.

For most ladies, where it is medically possible a hysterectomy is the first line treatment. For some ladies other treatment may be used. 

Losing weight is never easy and hopefully they may be able to offer some additional support if needed. At the moment perhaps focus on getting the scan out of the way and then wait for the treatment plan. Hopefully it should all be done soon and give some clarification about what is next. 

There are many lovely ladies on this forum who will understand how you are feeling at the moment and they will want to offer support. Please do reach out if we can help.

We do have the Support Line available from 8am-8pm everyday if you feel like talking things through would help.

Jane

Thankyou Jane for  your lovely kind words I really appreciate it I have had my ct scan today but I’m now panicking what if it’s spread etc my mental health has really gone downhill and I feel so scared and even though I have a very supportive family I just feel so alone in this I don’t know where to turn 

Hi Lisa

It is understandable that all the testing and a diagnosis of cancer is affecting your mental health. You are not alone with this. It is normal to feel panicky about spread but the scans are more to rule out any possible spread and to basically come up with the best and most effective treatment plan. 

I think also you can be surrounded by family and friends who mean well but it can feel hard for them to understand as they have not normally personally been through it. However much they are supportive it is still you personally that has just started on this journey. 

For myself and from being on the forum for some time now, most people do feel anxious at the stage you are at- waiting for staging scans. However once these are done and the provisional stage and grade come back and there is clarity about a treatment plan- most people do start to feel a bit better. That was certainly the case for me- I knew what I needed to do to get rid of the cancer and I knew what would happen and when and that gives back a bit of control in circumstances where everything feels out of control.

Turn to us whenever you need us. 

Jane

Hi Lisa

I agree with Jane, the worst bit for me mentally was when I was going through the testing, having scans, and wanting to know what was what. Once they had all the information, had come up with a plan for me, and I met with surgeon, I felt a lot better, and was right this is what I need to do, this is what is going to happen. The key is not thinking too far ahead, and dealing with what needs to be done now.

please don’t feel alone, come on here even if you want a rant, we all know what it’s like !

Lisa

Just wanted to reach out as I know this is such a difficult time when you are waiting on your results. The way I tried to cope was just to try to take one day at a time but please reach out as we all been on similar journeys.

For me I was also Grade 3 also but I have just finished my final Brachytherapy treatment 

Thinking of you. Xx

Hi Lisa, I was in exactly the same position as you in late December, I received the diagnosis of Stage 1 grade 3 endometrial cancer. I felt exactly the same, panic and a lot of worry. As others have said already on this forum, please take one day at a time - and certainly having the CT and MRI scans and then getting the results and knowing there was a plan has helped me a lot. This has all been achieved in a very short time. I need to have hysterectomy and then some follow up treatment, either radiotherapy or chemotherapy. 

I also called the Mcmillan Support Line a lot, sometimes just to have a good old cry and have someone listen, sometimes with specific questions which they were always able to answer. I also contacted my GP who was able to prescribe some anti anxiety meds which helped me to sleep. I am going for hysterectomy op tomorrow. I wish you all the best but please know that there are quite a few of us here who have gone or are still going through the same challenge. We are all here to support you. 

Thankyou ladies so much I’m finding the waiting for all the information on next steps so hard all I keep thinking what if it’s stage 4 terminal I’m going out of my mind it’s such a awful place to be but I’m glad to have this forum to connect with lovely ladies who know how I’m feeling thank you so much honestly 

• Thankyou for your reply good luck with your op tomorrow hope it all goes very well yes I agree I do think that once I have a plan it may ease the anxiety a bit I’m on Citalopram have been for over 15 years I’m taking propranolol at the moment to help with the anxiety but my mind is making up horrible scenarios like dying it’s awful