Newly diagnosed - anxious!

Hi Ellie, first of all you’re not alone, there are plenty of us here to support you. I also know how you feel thinking the worst and letting your mind run away with you, I did exactly the same and was a bit of a wreck for a while but I promise it does calm down. The most important thing is knowing what you are facing - have they given you any idea of the stage/grade or any treatment needed after surgery? x 

Hi Becca - thanks for your reply; very much appreciated. Yes,my mind has definitely run away with me today, that's for sure. Comforting to hear your similar experience and that it 'calms down'. I was given no indication of the stage or grade, but a GP letter I was copied into from the senior nurse who did the hysteroscopy biopsy said that my uterine lining was 'grossly abnormal' although my cervix and ovaries appeared ok. Consultant told me I might need radiotherapy, but they don't know yet until further tests are done on offending uterus once it's removed. I now find myself strangely emotionally attached to my uterus and am already in mourning. That possibly sounds ridiculous under the circumstances. 

That’s a shame they haven’t given you an idea of grade/stage because I’m sure that would help you to try and process things. I cried out of nowhere for the first few weeks and took my mind to the worst places possible but I think that’s perfectly natural. I’m now in practical mode to get this done and out of me. That’s positive that they think it’s contained, mine was also called ‘grossly bulky and abnormal’ and I have been initially graded quite low and been reassured it is very treatable when caught early so I hope that is somewhat reassuring for you. It’s true they can’t tell for sure until tests are done on uterus etc until but I hope my experience so far helps you. I also know exactly what you mean by mourning your uterus. I had my pre op today and was strangely offended when the nurse was celebrating it’s removal, obviously she meant because it’s cancer but I felt really sad about it all, it’s a lot to get your head around. I have no children and although I hadn’t planned any I’m still strangely devastated the choice has been taken away. It’s such a lot to process and deal with so what you say definitely isn’t ridiculous 

Hello EllieB3

Welcome to the Online Community and the Womb Cancer Forum. I am sorry that you find yourself here after having a diagnosis of endometrial cancer. Being diagnosed with cancer is a worrying and stressful time and I hope that we can support you and help make things feel a little less overwhelming. There are a lot of lovely ladies on here that have been where you are right now and will understand how you are feeling and will want to offer support. 

If you click on my name my profile will come up and you will see that I had endometrial cancer and treatment for it last year. I remember having good and bad days when I was first diagnosed and there is no right or wrong way to feel and I would just suggest you go with the flow, expect some wobbly days and reach out for support when you need it. 

I also felt that work would be a distraction for me but like you found it was not always the case. It is good that you felt able to share what is happening to you with your team leader and some of your colleagues. It made a difference to me on some of my off days. I could go into work and feel all was fine and then something would happen and it would trigger the panicky feelings. 

You said you are worried about the musculoskeletal pain and I understand that. After I had my initial diagnosis I kept looking back at any slight symptom and thinking the worst. My only symptom was a bleed. 

It is natural to want more information when having a diagnosis so I will pop a link below to a booklet that I found helpful. I would advise against going on Google though as a lot of the information out there is not as accurate as it should be and is not kept up to date. 

Womb cancer booklet | Macmillan Cancer Support

I hope that you do not have to wait too long to find out when your hysterectomy will be. Mine was 4 weeks to the day from my first symptom so hopefully it won't be too long to get sorted. 

Hope this helps a bit, but if there is anything that you want to ask please do so.

Jane

I find your reply so kind and considered that I feel like crying with gratitude! Just to converse with someone who appears to be more or less on the same page with similar feelings helps me feel comforted. That you had empathy for my uterine-mourning was unexpected - but it's clearly more common than I imagined! As you say, having the CHOICE taken from you - despite you not planning on children - IS devastating. People have said to me, 'well you don't need it anymore, it's done its job' (I have two adult sons). However,I was unprepared for the emotions it has stirred in me as it seems so closely connected to my sense of my identity as a woman and a mother. I'm probably going a bit soft in the head .

Thank you so much Jane for all your input, kind words and reassurance, especially around there being no right or wrong way to feel and to 'go with the flow' - wise words indeed. I needed to hear them today because I feel a sense of letting myself down almost after I broke down in front of a colleague and had to go home this morning. As a support worker of patients with complex needs, it's MY job to support - not have people support ME after I've lost the plot! Just shows how much of our identity gets formed around what we do for a living. You could say that my own need for support today was in conflict with an aspect of how I perceive my 'identity',  ie  as someone who is emotionally and psychologically strong.  And that I found hard. 

You are so welcome, it can be so lonely and although people think they’re saying the right thing they just don’t understand unless they have been through it or are going through it. I have found these forums so helpful and I am sure you will too - we’re all here for you. I said the same thing with my identity, I’ve had so many issues with my menstrual cycle etc I thought I’d be relieved but it’s strange that I don’t. It’s definitely a learning and grieving process as you go. Have they given you any idea on timescales for surgery? 

Yes - a huge learning curve; interesting that you feel the same about your identity too.  Well you had your pre-op today and mine is this Thursday.  Consultant said surgery 3-5 weeks, but I'm not psyched up for it yet so I'd better get working on it! Consultant (female) seemed enthused that one of her surgeon colleagues would be doing the surgery robotically ....perhaps they need the practice? (Joke...I hope). What about your surgery timescales?

Ahh that’s good they have your pre op booked already. Mine was really quick and was really reassuring they do so many checks. I’ve never had surgery before so was good to understand more of what will happen on the day and after - I have so many leaflets now I can start a library (not a fun library obviously!). I actually blocked out having surgery, got myself to getting a date and hadn’t thought beyond that! I have no date yet but nurse today said she thinks I’m pencilled in for 2 weeks time. That’s good they have said 3-5 weeks for you, it’s strange because you don’t want to wait but then equally don’t want it too soon either as it all seems a lot at once. Just got to go day by day as they say! Haha! I’m having robotic too and my consultant was so excited to tell me he had done 136 in 2 years, I think it’s because it’s such a step forward from the full open surgery it used to be. Hopefully we’ll both have a quicker recovery thanks to our robot friends! 

As a support worker of patients with complex needs you should understand that at times everyone needs a bit of support. Tears are very natural and I felt at times I couldn't cope with things I would normally take in my stride. Partly I think it is the shock and then the processing of it all. I found once I knew exactly what was going to happen and when with the treatment I felt a bit more in control. But its natural to have days like you did today and you in no way have let yourself down. Sometimes we need time to focus on ourselves to be able to return to supporting others and this maybe one of those times. Even when you are expecting a diagnosis, to hear the words and to start to experience the rollercoaster of emotions that comes with it- its tough for even the strongest of people.