Hi. Me again just needing to put the latest worry out of my head. First symptom I had was back in summer last year. thought I had a watery discharge then decided this was a urine leak so contacted GP. That led to several weeks of mucking about with pessary because she said I had a mild prolapse. The pessary being put in and out wasn’t pleasant and there was a little blood but GP said it would be because of the fitting/removal etc of the pessary. Made sense although I didn’t like it. Next stage was GP saying she thought it was my bladder that was causing the pink on loo roll when I peed. I was referred to urology for cystoscopy this was clear and a CT was arranged to check my kidneys just in case. CT was done in December and kidneys were clear but lining of uterus was 15mm. i was referred to gynae and then got the bad news a couple of weeks ago that cells in the lining were cancerous (still hate typing that word). Anyway, I’m now worried that this delay of 6 or 7 months will not be good. I know that the earlier you get something the more chance of a cure there is. Did anyone else have any delays? lots of the posts on here seem to show that people go straight away and get things checked. My scans ore on Monday and I’m terrified. Trying so hard to stay positive
Hi Ange19
My knowledge of Pole is pretty scant but being Pole positive means you have an added protection and you may not need pelvic radiotherapy.
This decision would be taken alongside a myriad of other variables so it is not a 100% guarantee.
I'm sure - I hope - someone can explain it far better than me.
Kxx
The way it was described to me was POLE is a genetic mutation that seems to be a good thing in the case of endometrial cancer as it seems to mean that the cancer stays confined to the womb. There is a study being started called the Rainbo trial and it will look at the outcomes in more detail. I was told there was an approximately 15% chance of recurrence for my womb cancer and if I had radiotherapy it would come down to around 4% risk, however this was before we new I had a positive test for Pole. With the Pole mutation, they hypothesise that the risk of recurrence is between 1-5%, so that is why I chose not to have it.
Are we tested for pole as a matter of course. I should have asked my oncologist but totally forgot as she didn’t mention anything.
I am sorry I don't know, although I am guessing so as it was done as part of my histology...
Sofarsogood, from what I understand POLE mutation testing is done mostly if not always for high grade
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