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:

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 :)

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

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

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!

any updates? You've been in my thoughts, hope everything was ok with your CT x

Hello - sorry.  I got locked out after changing my laptop and could not get a password reset to work for some reason.  Arghh - all sorted now.  

The CT showed nothing obvious but the consultant called me and said that my CA125 is still climbing and now in the 200's so they all agreed in their MDT meeting to skip the MRI (the next planned step in some cases) and to go for a laparoscopy.  So I am having that THIS Wednesday.  The date came through really quickly.  Also meant I had to tell my team at work as they will be picking up some work for me and although I am only planning on being off for a few days my boss is allowing me the scope to have more time off should it be instant less than wonderful news. 

Anyhow - keen to hear how you are and what your update is?  Your 6 weeks for the next test must be soon? x

How are you doing?  Any news your end?

I do wonder what happens once they rule out OC with a rising CA125?  

Heeeey! I'm so glad you're back, I was fearing you'd had some terrible news or something when you hadn't updated! I'm so pleased your CT scan was all clear, that must provide a lot of relief!

It sounds like you have a great gynae team looking after you, I'm sure you'll be in good hands! 
But given all your clear scans up til this point, I'd very much doubt they're gonna find anything too sinister now! And atleast it shows that your other organs are all good too! It's more likely the laparoscopy might show some endometriosis or some other benign cause for your rising levels. Are you having it done under a general anaesthetic? 
 

I have my next blood test later this week. I've been detoxing for the past week in the hopes of reducing my ca125 on the off chance  it is just being caused by IBS or something similar..... Anything to avoid more testing, cos I get serious anxiety when waiting for test results! 
Also, we have a little get-away booked for the end of the month, and I really don't wanna be jumping every time my phone rings if I'm waiting for CT results by then (which I think will be the next step if this lot of bloods are still high)

I hope it all goes well for you on Wednesday, and you'll have your answers that same day!!

From what I've read on these forums, I think, once everything has been ruled out, they just put you on 3/6 monthly bloods to monitor your levels. Most people seem to find it either levels off, or returns to normal, 

Loving the sound of your break.  We went to Centreparcs for a long weekend last week and it was bliss.  Just time with our little boy not thinking about work or worrying about this. Bliss.  Have a lovely time!!  I think we will book something when we find out the results of all this.  In fact, I know we will. 

I am really impressed with the gynae team.  I was at book club last week where one of the ladies was moaning at another (who is a NHS GP) about the fact that the doctors had been rubbish about her bad back and she was forced to go private etc etc.  I struggled not to poke her in the eye - with everything that is going on and with all the news about waiting lists I think we have been seen fairly quickly and robustly.  

Really hope your CA125 comes back as low and normal and this can all be a distant memory for you. You will have to have a glass of bubbles to celebrate.  

Am hoping the same for me after tomorrow. I am really happy that they will be able to have a good look at what is going on in there being honest.  I have struggled for years with cycles etc and I wondered if a hysterectomy might even help a few years ago.  For someone to look and see what might be causing all that and to rule out anything nasty will be epic.  

They are doing a biopsy too so a little more waiting ahead of me but I am hoping for some quick answers on at least something when I wake up even though I will have more info to come from that.  I hope I am being realistic - I have zero more waiting in me. 

Fingers crossed this week brings good news for us both anyhow.  What day is your blood test?  I find my GP normally gets the results back within a few days - hope you hear quickly. 

xx

Seriously, the communication you have had with your gynae team has been fantastic!
 

I think the rising ca125 with clear scans has made me really paranoid that there may be something sinister going on elsewhere in my body, so I've been checking myself like a crazy person. As a result, I now have an appointment with my GP this afternoon to get some breast indentations checked out. Hopefully they're just from normal aging and weight loss/gain stuff, but the fear is real cos of these blood results! I'm hoping that when I'm there, she may have access to my results from the hospital and I might finally be able to find out my levels from my last blood test! 
 

My next blood test is in 2 days. Unfortunately I get it done at the hospital rather than the GP, and last time it took 14 days til I got a letter from the consultant confirming that my levels were "again, slightly raised". 

EDIT TO ADD, my gp has let me know that my most recent CA-125 from the hospital at the end of January was 90.
That means it jumped from 56 to 90 in just 3 weeks! 
(I was on my period though, so hoping that may be the reason for such a big jump.) but if it's rising that fast, I dread to know what it's gonna be this week! 

How'd your laparoscopy go?

Arghhhh - why do I always find getting into this website so tricky?!  Always such a faff - suspect it is work firewalls etc. 

Anyhow - I AM FINE!!!  The op went well and the Doctor said that they had 3 of them have a look while they were in there and they could see nothing of concern.  They took biopsies from 2 areas and also a wash out to culture. 

ALL came back clear so I am officially discharged from the cancer team and back under GP care.  That is amazing but hasn't sunk in. 

Now - what I want to know is what your latest score ended up being?

I need to book an appt to talk to my GP about what next because my level was still rising at the last check but that is a problem for another day.....Oh that on my smear on Friday.  That better bloody not come back funny!!

Tell me your news.  xx