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:

Hey - could not log in to this to reply before now.  A bit nothing really - the sonographer said he couldn't see anything major - said there was some fluid but that he would need to pass on results to the consultant.  No clearer.  Haven't heard from them and I have called her PA yesterday and today and left voicemails.  Back in limbo but glad there isn't a canatalope sized tumour.  A load of things I have read have said that ultrasound is not reliable and so the initial relief didn't last ages.  

How about you?  Still waiting?

x

Hi

I guess no news is good news in this journey ey! I'd certainly be feeling very relieved if I was you! 
Did they mention doing a colposcopy cos of the bleeding after sex? I think that is my biggest worry right now! 
 

Still a long wait ahead for me unfortunately as my appointment is still ten days away. I feel as if I've accepted the inevitable now. I've been looking at cremation plans and planning out voice recordings to leave for my kids. Sometimes I feel at peace with it, and other times I'm an absolute mess. I swear this waiting is messing me up completely

Hi

I guess no news is good news in this journey ey! I'd certainly be feeling very relieved if I was you! 
Did they mention doing a colposcopy cos of the bleeding after sex? I think that is my biggest worry right now! 
 

Still a long wait ahead for me unfortunately as my appointment is still ten days away. I feel as if I've accepted the inevitable now. I've been looking at cremation plans and planning out voice recordings to leave for my kids. Sometimes I feel at peace with it, and other times I'm an absolute mess. I swear this waiting is messing me up completely

I can't believe you still have so long to wait.  Hope it goes quickly. The waiting is definitely torture.  I can't help but think that at least once you know you can work with it and make plans and fight it.  You can't do anything while you don't know anything.  Feel for you.  

I got a call today to ask me to go in for a face to face appoitment with the consultant.  It is next week.  I did ask what this meeting was for and didn't get much info.  Is this the meeting where they give you the bad news?  Wondering if I should take my husband but also not sure restrictions (and school pick up time) would allow anyway. 

Can't help wondering why they would want a face to face meeting?  

Hi Shankley. 
 

Based on what you've told me, I'd imagine the consultant possibly wants to bring you in for a consultation to discuss further tests...perhaps a hysteroscopy? 
It sounds like you've had an inconclusive scan and they are likely just wanting to follow up on that. 
When is your appointment?

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