Hello all, some very inspiring stories here, so I am going to ask for some advice from you lovely ladies!
I recently had a weird bug which I gave me diarrhoea for about 3 weeks, I felt awful, weak but mainly as if I had a gastro bug that went was hanging on.. I ended up going to see a GP (locum) who ordered a stool test, various bloods checked out my tummy and did an anal examination (apologies for TMI) - I think this was mainly as I had some bleeding (very red and only once) whilst ill - which I put down to excessive bowel movements.
She didn't seem overly concerned, I went away and had all the tests..
Next thing i'm contacted by my doctor to go in and discuss my blood tests - didn't seem urgent as they wrote to me to make a routine appointment. I was curious and thought they might have worked out why i've been so knackered for ages so off I went.
My GP told me that I had high white blood cell count, and low ferritin levels but also said that a CA125 test had come back elevated. TBH I was more interested in the ferritin level as I knew that could be the key to my fatigue. He explained that I would need to have a scan due to the CA125 and he said it would be urgent due to the national framework for high results.
All good, I didn't really think about it - we're moving house so my head is all over the place. I got booked for my scan within 8 days and had it this Wednesday just gone. Anyway, had my scan which went on for about 20 minutes a lot longer than any previous scan's I've had, I had one about 14 months ago which showed a polyp in my uterine lining that I had removed about 9 months ago, I assumed nothing new would come up.
As it happens I have been told I have a cyst on my left ovary, I was told at the appointment my doctor would decide what happens next. My GP said I have "some abnormalities" and he is referring me to a gynaecologist asap to "determine if I need to start treatment" this is because I have had the high CA125 and have had some additional bleeding (last month). I was told this yesterday morning after my scan over the phone and it was quite rushed.
All I really want to know is- what type of questions should I be asking at the appointment? Or will it be explanatory? I saw a gynaecologist about 3 years ago for inter menstrual bleeding which turned out to be my polyp and they were pretty dismissive.
I've had a Friday night in and starting to think about all of this and I want to have a constructive appointment.
Sorry for a long one, thanks for reading.
Written by
SeasideLover
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Whatever is going on, it sounds like your GP is on it and is getting you seen by all the right people as quickly as possible, and that's a good thing.
As for what questions to ask, it depends on what you are told on the day and whether more tests will be required. Sometimes it takes a few appointments to actually get to the bottom of it, and each one leading to a diagnosis is part of the jigsaw but not the complete picture. Maybe think of questions for different scenarios to find out what happens next?
Many thanks for your reply, thats good advice. I think I'm just a bit annoyed with myself, wish I had asked a few more questions when I had the chance. I assume the pelvic scan would show whether a cyst has a mass or just fluid? I'm desperately trying not to google!
Also annoyingly I missed a call from the hospital on Friday and when I called back after work (4:30pm) they had just closed the appointment desk. I will call first thing tomorrow morning.
As Vicki has said it may not be cut and dried by your next appointment. Maybe ask what the scan showed and how high is your CA 125?
What investigations will they do next and why?
I have to say that I was so scared during diagnosis I didn't ask anything but it sounds like yours could be any number of things perhaps they are just trying to rule out OC?
Thank you for your response- they are some excellent points and questions!
I wish I had been more proactive with those at the scan, and of course I have no idea how high my ca125 is - when the doctor was going over it he didn't say what it tested for so I assumed it was calcium- finally he said I could google it??!
I will hopefully have an appointment booked tomorrow, and will have a better picture soon.
Good luck for getting your appointment date booked! This might go without saying but I went into appointments with an idea of things to ask and then could only really focus on what they were telling me there and then so either forgot to ask/left with more uncertainty about what came next! So my advice would be at the end of appointment to confirm your understanding of what will happen next ie when will have I have another appointment, how will I hear about it, who will it be with, what is the scope of the appointment, is there a specific number to call if any questions etc as that can help eliminate some of the waiting nerves between appts. Taking a pen and paper/having someone come with you to note anything down is a good idea too, if possible.
For example after the urgent referral from the GP I expected the next appt to offer lots more info but it was in fact to just go over any family history/symptoms again and advise next step would be an MRI. If I'd known that before going in I think it would have helped managed my nerves/expectations a bit - like others have said each step will form one piece of a picture which might take a little while to form properly. And yes avoid the black hole of google as hard as it is!!
Thank you for your response! I have an appointment scheduled for Friday afternoon which is first day of my cycle so it's good to hear that it will be more of a consultation - I was worried the the appointment may be lost if there was to be treatment. The receptionist didn't know but said there wouldn't be anything invasive!
Some really good points about what to ask as I would just go blank and not really take it in. I need to prep something too as it all been such a blur and after having only 5 mins in a GP appointment, I came out missing things that could have been helpful i'm sure.
hi, I think both Ovacome and Target Ovarian Cancer have sheets with suggestions about what to ask your GP... they may be worth a look?? Definitely worth sticking with the expert sites rather than the wider Google sphere... Sx
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