I know this has nothing to do with lupus but another bloody thing to add to my list of the worst year of hell.....
I had to go to a&e last week from constant pains in the side of my stomach for 3 days straight, I just thought I had a water infection An it had got into my kidneys so shrugged it off, the dr wasn't very helpful at a&e she said my water sample and bloods are normal so sent me on my way.
The next day I made a trip to see my GP who felt my stomach An felt something odd An I said it feels very uncomfortable when he touches An when I sit down in my stomach, so he sent me to have my bloods for a Tumor on my cervix. I had my bloods done Thursday just gone with the nurse saying to me it will take a good week for them to come back. My GP called me the next day from having my bloods and said I have cancer cells in my blood and I need to have an emergency external and internal scan straight away so the hospital booked me in for the following day which was yesterday. I couldn't see the screen but my boyfriend was also in the room so he saw everything what she was measuring.... on my external scan apparently was a few black shadows what she was measuring and taking photos of (what to me sounds normal) but said to me she will send everything off to the dr and to look out for a call this week!
I don't understand how so many things can happen to me all in a year, I feel like I have the worst luck ever! I have been diagnosed with lupus, arthiriets and connective tissue disease. Then was checked for skin and breast cancer and now this! I'm only 21!!
Hi, please try not to panic. The ca 125 can rise in all sorts of things not just with cancer. Fibroids, ovarian cysts,endometriosis and menstruation can cause it to increase. The gynaes are not fans of this blood test in premenopausal women because of the high percentage of false positives. If it is increased they always get ultrasounds and urgent referrals in because it can be a tumour marker but not necessarily. Do you know how high it was? The top end of the range is 35. if you look online it explains how inaccurate this test can be for detecting cancer.
Mine is consistently elevated and just had it done again. I have persistent ovarian cysts,had ct scans and mri etc. they want to remove but I was given a choice of that or serial ca 125 testing and scans which I opted for. I also found an article about it being raised in lupus, if I find the link I will post it
I know it's easy for me to say try not to worry. They are dealing with it quickly, hang in there. Let us know what happens. Thinking about you
I can't seem to find the article but this is from NICE and their quality standard for testing for ovarian cancer. NICE is a reliable source and mentions lupus as a reason for it to be raised. I will continue to hunt for the article. I didn't save it! The below is cut and pasted from NICE
Non-ovarian cancer reasons for raised CA125 (from the United Kingdom Collaborative Trial for Ovarian Cancer Screening protocol list):
am vvvvv much feeling for you leanne... and am glad you've posted + got these great replies
courage...take this 1 step at a time...and please keep the news flashes coming in here on forum...vent here as often as poss...
am vvv glad the NHS is being so proactive & attentive
for what it's worth: SNAP (more or less). over the past 12 months i've been getting through complicated NHS pelvic multidiscipline team investigations which finished up in gyn oncology & lots of imaging + tests etc....gyn onc now is "watchfully waiting" with me on SOS...whatever is wrong in there, they aren't sure & meanwhile are avoiding invasive procedures (biopsies) due to my age & complexity (so many co-morbidities etc)...all a wee bit nerve-wracking 😏
i'm ancient compared to you😉...but when i was your age i spent a lot of time seeing doctors & feeling v poorly (my mother hadn't told me i had infant onset lupus) and also i had to go through awful gyn investigations cause i was exposed daily in the womb for 5+ months to the notorious endocrine disrupting artificial oestrogen DES (diethylstilbestrol) which gave me repro organ birth defects & signs of rare cancer up there...it was all very hard & v scary. but here i am 40+ years on...and i've had a great life: career, marriage, travel...despite my continually dodgy health
I had raised CA-125 before diagnosis. It can indicate tumours but it can also be raised with cysts, fibroids and just general inflammation. Being at the beginning of a diagnosis can just be crazy. It is a shame no one has spoken to you properly about what they are looking for or even what they have found. I hope you will be ok. The hospital is right to act quickly. In my case, I only had cysts which can cause discomfort and a lot of pain as well.
Sorry you're having such a terrible time at the moment but hope it helps to hear from your replies that you are not alone with this blood marker. It can be quite common with lupus or could be due to cysts so please try not to worry too much. Easier said than done I know, but we are all here for you. X
Positive thoughts......the professionals are taking it seriously and getting you checked out quickly, hopefully it will turn out to be something simple to 'fix'. X
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