Can you find out the name of the consultant and see if you can chase.  4 weeks is too long to wait.  

I have probably waited longer than I should have but I have put that down to Christmas break and spending some time getting the sepsis markers down.  

[@shanklygates77]‍ how'd it go today? :happy:

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 :)

It is indeed a laparoscopy!  Thank you Sarah.  Not usually so dense but the oscopy's have me all muddled. 

That letter sounds like no help!  'Again elevated' but what does that mean? Gone up or still higher than normal but reduced from last test.  Grrrr.  Sounds like you have tried all options to get an answer.  I don't know what I would try after all that.  

I have called my consultants PA today and chased to see if there is any news.  No answer but left a vm and hope I will get some sort of update before I go officially bananas - well more than I already was before this.  

I have suspected adenomyosis too.  Picked up when we had IVF 5 years ago.  They never confirmed it but said it was bulky and had the indicators of having this.  I wonder if there is any link between that and CA125?

And yes - I mean laparoscopy.  Why was I thinking of the throat camera one.  It is the keyhole op.  I think this worry might be frying my brain slightly.  

Good work on the healthy eating. I wish I could say I was doing so well on that front.  Easter eggs being in the shop is no blinking help.  ;-)

Take care and I hope you get an answer soon - there must be a note of your number somewhere?

x

Whoops! Sorry, my bad. My brother had the camera down his throat and I was just thinking of that. 
thanks for the correction! 
 

I've read online that adenomyosis can cause raised ca125, but I don't know *how* raised, or whether it would account for a steady increase over a period of time. ‍♀️
 

atleast we both have some hope that it could just be that!! 

Have you heard anything as yet?

No news from my CT although I am still leaving vms left right and centre.  Not at nail biting stage yet but won't see out the week before attacking them again no doubt.  

I did get a letter through which was the consultant summary that she sent to the GP.  Confirmed our conversation and says "we didcussed that if her CT scan is reported as having no abnormalities, in view of the sustained CA125 then laparoscopy would be indicated to evaluate her abdomen".

It also has a full list of the extra bloods they took.  AFP, CEA, LDH, CA199.  Obviously I have googled them all and they all pretty much have cancer as one of the things they can indicate.  

Fingers crossed we both get news soon.  x

Hi Shankley, sorry I've only just seen your message. I hope you're still managing to keep those fingernails intact! 
have you heard anything yet about your blood tests and CT scan? I'd imagine the bloods should be back by now, but I'm not sure how long CT results usually take. My brother had an MRI recently and it took 4 weeks to get the results. 
I've got my fingers crossed for you!
I can't help but think I'll be in your shoes this time next month, waiting for the same kind of tests. I'm still holding out hope that it's all just being caused by the adenomyosis though!

Hi Shankley, sorry I've only just seen your message. I hope you're still managing to keep those fingernails intact! 
have you heard anything yet about your blood tests and CT scan? I'd imagine the bloods should be back by now, but I'm not sure how long CT results usually take. My brother had an MRI recently and it took 4 weeks to get the results. 
I've got my fingers crossed for you!
I can't help but think I'll be in your shoes this time next month, waiting for the same kind of tests. I'm still holding out hope that it's all just being caused by the adenomyosis though!