Hello all,
I'm 42 and mum to 2 boys. Back in March I had a very short period and the following month it just didn't stop, it wasn't heavy but I spotted for a month and had lots of bloating and pain. I paid for a private ultrasound inside and out that found a thickening of the womb - 18mm and what they thought was a poly approx 14mm. I went back to the consultant early May who said she couldn't perform the hysteroscopy and polyp removal due to my high BMI. Thankfully my GP referred me to the NHS who performed the hysteroscopy on the 12th of July.
Hysteroscopy day came, 'oh, that's not a polyp' they took 2 biopsies and 4 biopsies all around my womb and said worse case scenario it will be pre-cancer cells and they may need to fit a coil.
I get the call to come in this Tuesday the 26th. First time I've met my consultant and she said it's showing cancer, type 1. She books me in for an MRI and CT scan but doesn't expect me to have these for a couple of weeks so will see me around the 16th, as it happens my nurse got me a cancellation that same night for the MRI with contrast and my CT is Sunday. I will see my consultant again Tuesday the 2nd.
She said the next time I see her she will be able to tell me the results of the scans, if it is anywhere else and where it is in the womb, and she will book my in for a hysterectomy approx 2 weeks later.
This is all happening so fast, my head is spinning. Has it happened this quick for anyone else, from what I am reading its usually a bit of a wait? I am so scared for my results Tuesday, I just don't want to leave my boys to grow up without me, I don't know what to do with myself, I am devastated.
I have no idea at all what to expect now.
Alex x
Hi . After my Brachytherapy and my first 3 monthly check-up I asked my Oncologist if I'd automatically be offered a CT scan and he said no, I got the impression it's a matter of budget constraints. (I was also grade 3 serous). An MRI is more expensive and certainly not offered as a matter of course. It's patient led if you have any problems they'll investigate initially by a blood test checking CA125 markers. These can detect a change in tumour markers I believe. Anything found then would probably lead to a CT scan, not an MRI scan.
I'd attended 4 quarterly check-ups post treatments with internal examinations. When I mentioned to the consultant my abdomen/chest pain he thought it sounded more of a thoracic problem and told me to consult my GP who after other tests (Xray, ECG) referred me for a CT scan. This showed my cancer had metastasised and now I'm firmly back under the control of my Oncologist. I've had a pain come back in my side (where one of the original pains had started) a blood test has just shown my CA125 markers down again to 14. I've no UTI so when I see my Oncologist on 16/8 he might send me for a CT scan. The only worry I have at the moment is the Gabapentin I've been prescribed for Peripheral Neuropathy might be contributing to my decreasing GFR an indication of kidney failure! Hey ho, if it's not thing it's another!
Hugs, Barb xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hi , yes, great news about the CA125 levels. Prior to chemo I was 100.
My oncologist's secretary is consulting other staff member to advise if I should reduce Gabapentin, it hasn't helped the PN and there's a direct link between my GFR going down and my increased dosage. It's one of those drugs you just don't stop taking has to be done gradually.
Had to laugh the tablets are 600 mg each, tried to cut it in half, one shot out and got lost behind a cupboard which had to be checked underneath in case the dog got to it - was mortified at the cobwebs and insects revealed. Must update cleaning regime!
I think a few ladies here who were also grade 3 serous pressed for chemo after they read my story, other health trusts seem to offer chemo when grade 3 serous. I was only ever offered Brachytherapy - they say hindsight is a wonderful thing. If I'd been as knowledgeable then compared to now I'd have requested chemo. I remember at the time I was slightly disappointed I wouldn't be getting a wig!
Anyway, let us know how your appointment on Thursday goes.
Big hugs, Barb xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hi
Just to add my tuppence worth to the scan discussion-one of the reasons for not doing scans is that they can’t pick up tiny cancer so are actually not really of any added value. I had a Ned result after treatment and I did have an mri at that point, but was told that there were no guarantees of no cancer as the mri wouldn’t pick up cells or anything tiny. So while there may be financial and staffing reasons, there are also medical reasons.
When my cancer recurred it was able to be seen on an mri and subsequent CT scan because it had grown to just under a centimetre.
Sarah xx
Oh we are all prone to many wobbles along the way Robin-goes with the turf! I think when I was first diagnosed I was under the impression that scans showed everything, and that I would have regular scans, but I soon learned that was not actually the case.
Our consultants use them wisely in terms of Ct/pet scans to avoid exposing us to more radiation than is necessary too.
We all worry I think when treatment ends and we are basically on our own-our safety blanket of being at the hospital is gone and I felt kind of abandoned after my first round and being at the hospital every day for weeks. For me now, patient led follow up actually reduces my anxiety levels, and I know I would be able to see my consultant/surgeon whenever I feel the need.
Sarah xx
