I'm not really sure what to write or what I am doing, head in a bit of a whirl at the moment, just find myself going round in circles on the internet trying to look for answers I cant find.
Went to GP Monday with various symptoms, some which if am honest I've ignored for a while. symptoms include, severe bloating, constipation (which I thought may be causing the bloating) being hungry but not able to eat much without feeling full, extreme tiredness, find myself nodding off at my desk at work. night time constant toilet visits (driving me insane), also a lot of unexplained abdo and back pains.
Gp arranged for some blood tests to be done on the Wednesday morning,(including CA125) which he did explain in detail what it was for etc. and made a follow up appointment for the 19th August while I was there. I have a heavy family history, my mum had breast cancer 3 times from when I was 14 onwards (am now 41). She had 2 mastectomies at different times, and plenty of chemo and radio each time. Sadly this came back last year and had rapidly spread all over and my mum went for a long sleep after 3 months. She fought a good battle and weren't one to take it lying down, I strongly believe this helped her through majorly.
Anyway (sorry for babbling) Thursday morning 24hrs after my blood tests my GP rang me, I knew straight away something wasn't right. My CA125 levels have come back more than double the expected rate. (over 70) He explained a few things to me and said don't be alarmed but things will now move pretty fast, I now need a scan and a follow up with gynaecology team etc. He could tell I was a bit put out by this and as I had the children with me (11 and 15) he said to go finish what I was doing, try take in and process what he had said and he will call me back later on in the day. True to his word the GP rang me back at 5pm just b4 I left for work.
I asked a lot of questions and asked should I be worried etc, due to family history and symptoms and the bloating, he said he does have concerns but cant really say much more until the next stage of tests follow ups etc. He did say this would usually be a scan in 2-3 weeks and perhaps a tvs depending what they see, then a follow up with gynaecology usually 2 weeks or so following. He did say he has spoke with 2 other doctors as he is concerned with the high levels and they have decided to proceed with an urgent referral and that I should have both appointments through within a few days and they will be pretty close together as they feel time is of the essence.
I already suffer with fibroids and mild endometriosis which can add to slightly raised levels of CA125, GP did say it wouldn't usually be as high as it is with them conditions.
I was just wondering if anyone has been through something similar and still received good news at the end of this and NOT a diagnosis of OC which I know this is all pointing towards.
Sorry for the long post and I would like to thank anyone who takes the time to read this and respond.
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linzilou78
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I am so sorry you are going through this, but it is reassuring to see your doctor is recommending an urgent referral. You need that scan.
You also need a BRCA genetic test for that inherited mutation as soon as possible.
Yes, this is a bolt from the blue, as you are so young, but you can fight this, once you know what it is.
It is true that things will move pretty fast now and you should take this bit of time before your scan to balance your budget, take care of any loose ends at home and at work,
Confide in your close family and your partner and let them offer any help they want to. You can wait until you have a diagnosis, before speaking to your children.
Like yourself, they will rise to the occasion and be a big help to you.
Research all you can, using the Cancer Research site, the Macmillan Charity site, Ovacome and look for the most recent dates.
Look up the BRCA mutation also.
Also, look up your local hospital and it’s Gynaecology Oncology team and that will familiarise you with your possible team.
If you do not have a brilliant local hospital, check for the nearest best cancer facility.
Hi! So sorry to hear you're in this situation. The waiting is absolutely horrendous.
I'm 31 and have endometriosis too. Earlier this year I had an ultrasound which showed a cyst from endometriosis, with an area of concern within it. I had the CA125 the same week, which came back at 68. An MRI couldn't shed any light for definite on what was within the cyst, so it was treated as dodgy, with surgery soon after.
The results came back as an endometrioma with malignant transformation. This is really rare, but as it was contained I didn't need any further treatment. I've recently had a repeat CA125 which has come back at 67. The consultant wasn't concerned by this, due to my endometriosis, and he also said in pre-menopausal women, it can fluctuate throughout the month. I know it's easier said than done, but try not to read too much into the raised CA125, especially if you have endo. I was reassured by the specialist on this. As for investigations, it's good that they're happening quickly. Hopefully they will be able to offer some reassurance to you. I found it helpful to make a list of symptoms and questions for the specialist.
Hello... my friend and I went through this at roughly the same time.. she had fibroids I had OC.
This is why it is so difficult to diagnose on symptoms alone. Your GP sounds ace and they are doing all the right things to find out if this is ovarian cancer but equally if they are able to dismiss this possibility now they can look for whatever else it might be. It is scary but they are doing their absolute best for you.
Meanwhile in stress land, please treat yourself very gently and don’t google... because that will only add to your stress.
You can ask us anything you want or just vent if it helps xxx
It’s hard not to worry until you have definitive answers. The ladies on here are all fantastically supportive.
I had a similar experience a couple of years ago asked for an ultrasound as I’ve previously had cysts which showed up bilateral complex cysts. GP called in the middle of the school run and said she was sending me for further tests. Rather than wait for these I sent a private gyna a few days later my ca125 was 176 and I also had a ct scan. The ct scan indicated that the cysts weren’t anything to worry about but due to size (both were greater than 5cn) I was booked in to have an op to remove them. The ladies on here were great and very supportive. I had annovary removed and tube and diagnosed with endomtriomas (chocolate cysts) and severe endometriosis
Sorry to hear you are going through all these problems at the moment.Your GP sounds really spot on as he is sending you for tests.
I had similar problems to you and even after my CA 125 coming back at 700 the GP said there is no need to send you to hospita justl yet !! However the pain was too much and I went to A&E and was diagnosed within a few hours unfortunately with OC. The hospital gave fantastic care and after treatment I'm now in remission.
THANKS FOR ALL THE LOVELY REPLIES... I've spoke to GP again this morning.. basically my scan appointment will be through anyday and I will have that and my follow up within 14 days from last Thursday... so not long to wait.. although easier said than done.. 1 day I'm like.. cant change nothing.. is what It is and whatever IT is or hopefully ISNT will deal with it as best as poss etc.. THEN I'll have a day where I'm like... how.. y... cant process it.. snappy... I think it's the waiting that's the worst... STILL HOPING it's just a scare and due to other issues.... HOPE U ALL WELL and I will update... Really do appreciate everyone who's took the time to comment xx
HI... HAD A call from the hospital today.. I'm booked in for a normal ultrasound and an I eternal one on Wednesday 14th August.. then straight into the clinic to be seen to receive results.. I personally thought this was pretty fast moving but apparently because it's an urgent referral that how it done x
How I feel for you, linzilou!! You're at the horrible, frightening stage we all remember so well. Try and keep yourself busy - not difficult with two children in the school holidays! I feel it would be far better for you not to google anymore. (Easier said than done) It probably will just frighten you more and won't help you stay optimistic. If you feel you must Google, only do so on Ovacome or Macmillan or other appropriate sites. Keep in touch with us all so you don't feel alone. I'm very impressed with your Doctor, moving things along quickly. This must also be such a hard, sad time for after losing your Mum.
Keeping my fingers for you 🤞 that the result isn't what you fear but if it is, the sooner you get treatment the better.
Sending love and a big hug and the hope that things aren't as bad as you fear. Keep your chin up and try and keep smiling, Solange 😊
Well not me but a friend had 5 fibroids they were huge and put pressure on other organs, which caused problems. They removed all they were not cancerous. Best wishes, Liz❤❤🇺🇸
UPDATE... I posted 6 days ago regarding my situation.. my urgent referral went through pretty fast and is now scaring the life out if me.. I'm at my local general hospital in 4 days.. theis Wednesday 14th... This is after the gynaecological team decided this was the right way to proceed.. I am in for an ultrasound then an Internal vaginal scan.. then straight in to see a specialist nurse.. for results...apparently it was decided to proceed this way after the notes on gps referral alongside my Ca125 results.. SHOULD I BE WORRIED... I've never heard of results on same day.. I knew from what Gp had initially said that I wouldn't be waiting long but now my mind is in overdrive and my poor husband is beside himself with worry too x
Hi Linzilou how are you now? I feel your pain and want to know how you are now? I'm about to start carbo/taxol for 2nd time in 3 years but what is the latest update with you now? I do hope you're okay
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