Just diagnosed, really struggling

Hi LunarSoul

Welcome to the Womb group. I am sorry to hear that you have had a diagnosis of endometrial cancer and that you have been through such a long journey to get here. 

I can understand your concerns that it has taken 10 months from symptoms to diagnosis and am sorry that you have already been through so much. It does seem like there has been several delays that have affected the time it has taken to get where you are now. 

Reading what you have written I would think about checking that your original referral was actually made on the urgent pathway- rather than the routine pathway. Although it is an aim rather than a guarantee to be seen within 2 weeks and some people do wait longer- you have waited far longer than would be expected. Also when the actual urgent referral was made as the timing goes from there. 

I would also be thinking about finding out if the reasons for the delays are administrative, clinical or whether they are related to hospital delays due to for eg;staffing. 

The appointment offered at 2 months does seem late for an urgent referral but I know others have waited where their hospitals have been particularly busy. Confusion over the appointment is understandable and it can be easy to miss things- I was fortunate in my CNS/ nurse team calling me directly to arrange appointments and give reminders. 

The delay for the hysteroscopy and biopsy does seem to happen where a general anaesthetic is needed. I know other ladies on here have had a bit of a wait- whereas ladies who have had them done in clinic do seem to get seen quicker. 

I understand that now you have the diagnosis you just want to get on and get the treatment sorted. 

With the MRI I would suggest contacting them and ask if there is a short notice cancellation list that you could go on. The time from the MRI to the MDT discussing the results seems normal. 

What I found myself is that once the scan is done and the MDT meet, things can move quickly. Between the diagnosis and treatment plan can be a time where you feel you are in limbo. I remember contacting my GP and they were able to intervene/ contact the hospital directly and I was given an appointment the following day. This was the first time I met my consultant and from that appointment (on a Friday) I was sent straight for my pre op testing. I had surgery on the Monday. 

You could consider going to PALS at your hospital and seeing what they can do to help and also to hopefully mean that others will not face such a delay. 

Talking with your nurse was a good first step and hopefully they will be able to help look into things for you and also give you support with your mental health. I know my CNS was a great help to me. 

Having a diagnosis whilst also facing other things in your life such as facing redundancy and also having family that need support can be really challenging. Perhaps consider speaking with your GP/ mental health team about the affects this is understandable having on your mental health. 

We do have the Macmillan Support Line that is there from 8am-8pm everyday and please do consider giving them a call if it would help to talk things through. I am really sorry that you have had all this going on and hope that you can get the date for your surgery very soon. 

Jane

Hi Jane,

Thank you so much for taking the time not only to read my long message but also for such a thoughtful and helpful reply. I really appreciate it .

Re. waiting list, i did ask about it and the nurse said some about "having a tracker" but I didn't understand what that meant, so I'm going to phone and ask tomorrow. 

I'm so exhausted and cognitively challenged currently and I'm not interested in kicking up a stink to make things difficult for anyone but it's disgraceful the amount of time it's taken. 

I do distinctly remember a GP telling me over the phone that I was on the "urgent cancer referral pathway" in October, because she said not to worry and that it didn't mean that I had cancer, it was just until they could rule it out. I also freaked out after that phonecall and remember phoning a friend for some reassurance.

Thanks

Hi LunarSoul

sorry to hear of your experience. Good luck with speaking with nurse tomorrow re MRI scan, and whether chance of getting it earlier.  If no joy there, perhaps see if your GP could help? 

1. Thanks. The nurse's hands are tied. I'm going to speak to a GP today hopefully and tell them about the pains I'm getting, plus the crippling fatigue and weakness.

Good luck x

Hi everyone, just thought I'd update with where I'm at now, 19 days since I wrote that loooong post! 

Had pelvis MRI on the 29th July (it took an hour!). I felt a bit better for about 24 hours after that, probably because it felt like something was finally being done...but I am utterly terrified still of the MDT this coming week.

I've been through all sorts of worst case scenarios, imagining them telling me it's incurable, a high stage, that I only have a few months to live, etc etc.

I've been in a near-constant state of fear - it will have been be for 4 weeks come the MDT. I manage to distract myself for a while, but the pain and fatigue keeps reminding me. 

I started vaginal bleeding today and also developed new pains which means I can either lie down or stand up, but sitting or bending are painful. I logged it with NHS on 111, as I wasn't sure if it was clinically significant and wanted a professional opinion.

I'm just so scared of being told it's spread. It's been such a long wait already since I was first referred on USC pathway (9 months so far) and I don't know how much more stress I can take.

I found out that I got taken off the urgent pathway because I missed an appointment after getting the wrong week... And I phoned to apologise as soon as I realised! And everything since presenting again with bleeding in February has been on a routine pathway.

I do have a complaint in with the NHS Board but I'm scared it will be too late for me now due to delays and administrative cock-ups.

Anyway. That's where I'm at. 

Hi Lunarsoul

Waiting to find out the results was really the worst time for me, I was convinced it had spread throughout my body, not helped by them wanting me to have a PET scan to check lymph nodes.

as soon as I knew what I was dealing with ( it hadn’t spread to lymph nodes, but they found a few cells on an ovary) I felt a lot better. There was a treatment plan, and my mind shifted to this is what I need to do, rather than thinking all sorts of “what ifs”.

a grade1 or 2 cancer tends to be slower growing, so even though it has been some time for you, that’s not to say it has spread.

I know it’s a real struggle for you at moment, but not long for you now to know what’s what, thinking of you x

Thank you so much Waidhe. Yes, I keep hearing that the not knowing is the worst bit. 

I don't think our brains are able to deal with such uncertainty long term. Certainly an awful limbo to be in.

Thank you for your kind words, they made me feel a little better x

I had a delay in the early days and due to my complex health issues, there was a lag of around 4 months before I started any treatment. However - when they redid the MRI/biopsy again before treatment, nothing had changed in my condition at all.

What I am saying is that early stage EC is generally slow-growing and even if it's higher grade/stage - it's a very treatable cancer. What's happened is not acceptable but try to take each day at a time and focus on the good. You never know, things could be much better than you think and even if things take a turn for the worse - many women bounce back well, even with later-stage EC.

Sending good wishes and keep us posted.

Thank you, I appreciate that. I just feel so traumatised by this horrendous wait. I know it's not unusual - 4 weeks between being told I have cancer until MDT/ treatment plan/initial staging... But the 9 month delay in getting to this point is compounding the worry. 

I can't concentrate on anything, can't read, or watch anything longer than 5 minutes without my mind turning back to the "clear and present danger" that I'm powerless to address. 

Thanks and I will update here when I know more. I'm so very, very scared