Hey,

How are you doing?  It is your 10 days today?  Have you heard?

I had my appt with the consultant yesterday at 4pm and have left no clearer on if I do have cancer but completely reassured that they will find it if I do. 

She told me more about my CA125 levels which have risen from 117 in late Nov to 135 in late Dec to 145 in the NY test. The ultrasound was incolclusive so they are doing a CT scan but from the chest down as CA125 also indicates breast cancer.  They also took more bloods which I thought it would be worth you asking about.  She said because of my age she wanted to look at younger forms of ovarian cancer and there were different bloods for this.  I asked more but got the same explanation worded differently and no clearer on the name.  Maybe you could ask for that?  They took them there and then and it was 3 different tubes (I think it was 2 yellow and 1 purple if that is any help).  

The CT should be in a week or so and then she said she would look out for the results.  If the results show something then I am back in to discuss them.  If they don't then she wants to do a laprascopy to see what is going on. 

Hi Shankley, I'm sorry to hear you've still got no answers! 
I thought your scan was clear though, so are all these tests just because of the rising ca125 or have they seen something that has concerned them? 
 

I had my appointment this morning, and all my scans were clear. They've repeated the ca125 so I guess I'm just hoping that isn't rising or I may need more tests too. 
But I'm so greatful and so relieved right now. 

im still taking it all in to be honest. It's great that nothing was found, but it still doesn't explain my bleeding so I'll freak out if it happens again! And I'm still not out of the woods til I know if my ca125 is coming down. 

Yay on a clear scan.  So pleased for you and I bet you are feeling relieved.  I hope your repeat bloods show a lower CA125 too.  Mine always came back within a few days so fingers crossed for a short wait with a lower level.  

I have a 'boggy uerus' (their words) so any US with me is always tricky and because they couldn't see much and the levels are still going up they are keen to find out why.  Who knows.  More waiting but I have got used to the waiting now and manage to park it a little out of my head until the day of the appt when I start biting my nails like a teenager.  No manicures for me until I have a clear answer as it is a waste of time and money. 

Have they said what else the bleeding could be if it isn't anything sinister?  The consultant asked me lots of questions about mine and then said that a lot of that could be the coil which I had removed while in hospital in November.  The CA125 thing is the worry for me and what it could be.  

Anyhow - well done on the scan.  A big phew for today and then regroup for your blood results.  x

I am so relieved that the scans were clear! The doctor said my kind of bleeding is often hormonal. But she also mentioned endometriosis or adenomyosis as possibilities, but would need to take a tissue sample to confirm, and because I'm not having any pains she didn't feel it necessary to test for that just now. However, she told me that if the bleeding continues to be erratic or painful, they can see me in a different clinic and do more tests. 
 

So, when you've had blood tests done at the hospital, do they call you with the results? I asked the nurse how I would be given the results and she didn't seem to know. Do you think I should expect a phone call? 
 

Aww, I really feel for you, The waiting and uncertainty is torturous! However, try to find peace in the fact that nothing obviously sinister has jumped out during the checks that they have done so far! 
I'd imagine that having a raised ca125 for some time after sepsis would be expected! Ca125 can result from inflammation or infection in many places. 
Did you ever find out what caused your sepsis? Could it be possible there is still a bit of infection lingering somewhere? 
I was just recovering from a chest infection when I had my abnormal ca125, and the dr said it's possible that was the cause. 
I hope you get answers soon. Be kind and gentle to yourself! 

Hi Shankley. 
Just wondered how you're getting on? My ca125 is rising too, so looks like I'm walking a similar path, and I've no idea what to expect! 

Oh no - I had hoped your bloods would show an end to all the worry after a clear scan etc. 

What is next for you?  I sitll have no news on my CT which I had last Friday and expecting a call any day with something.  For me the next step is a hyteroscopy unless the CT showed anything more and then they said they would deal with that.  My CT was from neck down to thighs so I wondering if they are checking breasts too as that can cause high CA125.  

Can you ask for a CT?  

Sorry you are still in this waiting limbo - it is the worst!!x

They haven't even told me what level my CA125 is at. 
I don't know where we'll go from there because I've already had the hysteroscopy etc. And the idea of a CT scan terrifies me! I'm just hoping my levels suddenly take a nose dive when they're next checked! 

How are you feeling? All this waiting around for answers must be wreaking havoc on you!
The CT may have been checking your chest because chest infections such as pneumonia, PE etc can raise ca125. We just automatically think they're looking for cancer though don't we, but I think they're just checking the areas of the body that can raise ca125 for various reasons s. 
Your levels are still pretty low where cancer is concerned, so hopefully it'll be something benign or very early stage! 
 

Please keep me updated x
 

So annoying!  I did find one of my test results on the NHS app (when the GP ran it) so might be worth having a peek or calling the GP.  The receptionist gave me my score when I asked her for one of them.  But I think that would only work for ones the GP had requested and it sounds like you are calling around loads and not getting anywhere which is so frustrating.  

Thinking positively (because it is all we can try to do to keep sane) I wonder if they have gone down but they will keep tracking and retesting you until they are at normal levels?  Completely guessing and I would have assumed the same as you with no news. I hope you get some answers soon.  

I wrote above that I am having a hysteroscopy next and that isn't right - I get them all muddled up.  I think I am down to have the keyhole op - endoscopy maybe - where they have a good old look.  I have a bulky uterus (how lovely) so they almost need to move that out of the way to see properly.  

I am doing OK - the waiting is insane but it has been so long now that I have periods of feeling worried and then almost forget about it (but not fully if you know what I mean) for a while.  I have been biting my nails for the first time since I was a teenager if that is any indication.  I am finding it hard to properly focus at work and I am looking forward to this all being over (or the waiting bit at the very least) so we can plan and book a holiday and move onwards with whatever is ahead.  

As you say the numbers are not in the thousands which I know they can be so I am hoping for an early catch if it is anything at all.  

Good luck with the chasing.  My husband is always telling me that being the most patient of patients they have will never get me anywhere and I need to be the bolshy one they want to sort out quickly to stop my nagging.  Trying to be less British and adopt his style.  

x

I think the Endoscopy is a camera down the throat, so I'm assuming you might mean laparoscopy? Where they look inside the pelvis? I hope you hear back from your CT scan soon and get some reassuring news so you can book that holiday! It's horrible living under a dark cloud!

Just popping on this thread to clarify that an Endoscopy can be used to look at any number of areas of the body, it isn't just used for the throat. An endoscope is just the general term for a camera that looks around the body so it isn't incorrect. There is a useful list of endoscopic procedures here which I think is quiet helpful. You;'re absolutely right though, an endoscopy that goes into the abdominal cavity through a small incision (keyhole) is called a laparoscopy. It's all very confusing isn't it! I hope that helps :)