Hi everyone. In advance, I'm sorry if my writing is disjointed, I am really struggling after stopping my HRT and having major cognitive issues.
This is obviously on top of processing a completely unexpected diagnosis of endometrial cancer (grade 2) which I received 5 days ago after a hysteroscopy/polypectomy and biopsy. The reason cancer wasn't on my radar is I first went to my GP with unusual bleeding 9 months ago and was told at that point I was on the "urgent cancer referral pathway", but not to worry, it was just something they did before they could rule out cancer.
I had bloods done which I was told didn't show anything out of range apart from a slightly elevated cholesterol and calcium levels.
2 months after my initial presentation I was offered a consultant gynaecologist appointment (2 months is obviously not "urgent" in my book, so I thought it was just to check my fibroids which I've known about since 2021).
Unfortunately I got the weeks mixed up (I have severe combined ADHD and a lot of other stressors going on, not that you need to be ADHD to put the wrong date in the calendar!) when I realised I had missed my appointment by two days I phone up to apologise and explain.
Another 3 months passed before I had an ultrasound and non-invasive camera thingy early March and I was told although my fibroids hadn't really grown in the past 5 years, my uterus was twice as thick as it should be. I was then offered another Gynae appt to take a biopsy, but unfortunately I passed out just discussing the procedure so I had to opt to have a general anesthetic. (I have a history of not being able to to tolerate a speculum or any penetration, it's extremely painful for me).
Biopsy, hysterectomy and polyp removal was carried out on the 9th of June. I was told I have cancer on the 9th July. I have been further told the MRI won't be until 29th July, and the MDT/Big Meeting will therefore be 5th August. This is before I even get a hysterectomy requested.
Obviously waiting over 10 months between initial contact and starting treatment is worrying me greatly. I've been increasingly fatigued for two years and it's been getting gradually worse. Just kept telling myself it was menopause/ageing/stress. Recently had bloods to investigate thyroid function and it's not that, nor anemia.
I have a long history of hormonal mood problems, psych inpatient stays on occasion probably due to being undiagnosed ADHD, but since I've been on HRT I've been really stable for the first time in my life. If I missed a dose or the patch fell off, I would have a mood crash within 2 days.
My HRT was increased to 1.5 patches a few months ago after I complained of worsening mood. This was whilst I was awaiting a biopsy. Again, I didn't think it could be cancer because why would they increase my hormones? If I'd had stopped to think about it I'd realise that a biopsy is to check for cancer, but as it had already been months and months I assumed I wasbt on the urgent/suspect cancer pathway. Because 8 months isn't "urgent" in my book.
If anyone's got any advice I would appreciate it. I'm frankly really scared about the length of time this is taking and I'm wondering about pitching up outside the Radiology unit with a massive timer showing how long I've been waiting already 
Would writing to my MSP even better worth it at this stage?? I've let the gynae nurse know how upset I am about the wait and how much my mental health is a hugely disabling factor too.
I live alone and look after my elderly parents once a week (physical disability and dementia). I was made redundant a year ago and am self employed but I've not been able to make any money recently because I am so darn exhausted all the time.
Thanks for reading
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
