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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to be totally totally p***ed off and appalled at my local hospital

68 replies

moomoo1967 · 11/08/2010 10:59

I shall try to keep this short.....I had two ruptured ovarian cysts back in May....I have had a follow up scan and another scan back in June. They thought that the cysts would reabsorb back into my body, one has done a runner the other one is now 7cm. They did a blood test on the last appointment but just said that it was routine.
I went to the doc's this morning as I thought I had a bladder infection and the doc said " so have the hospital spoken to you about the ovarian cancer ? " I said "about the what !! " No-one at the hospital had said that that was what the tests were for and no one had been in contact since the appointment on the 29th June. The doctor was as puzzled as I am, apparantly they do a blood test to detect a protein called CA-125. Normal would be 35, mine is 60 which apparantly is high. other conditions can cause this protein to be present.
Well it was such a shock that that was what they thought I may have, I burst into tears and was shaking.
The doc suggested I call the consultant, who is on holiday ! sods law so I speak to her PA who said she would contact the registrar on call but in order for him to be able to access my notes it could take more than 48 hours !! meanwhile I am in bits wondering if I do or do not have ovarian cancer.
Does anyone have any similar experiences of being tested for this protein ?
Do I complain at the fact they could have spoken to GP to advise me or spoken to me themselves ?

OP posts:
loopyloops · 11/08/2010 11:02

Oh my goodness.

Don't think about complaining just yet. Try to get through the next 48 hours (or try to see if there's any way someone else can let you know. I'll have my fingers crossed for you. :)

Threelittleducks · 11/08/2010 11:02

OMG! Yes,complain very loudly!! That is absolutely shocking and I hope they offer you a bloody good explanation.

Good luck btw. Hope all is ok.

Original poster
moomoo1967 · 11/08/2010 11:03

Thanks loopyloops, all I could think about was my DD who is at present at my mums on holiday up north

OP posts:
OrmRenewed · 11/08/2010 11:03

That is appalling. No experience or advice I'm afraid but I am so so sorry.

Original poster
moomoo1967 · 11/08/2010 11:04

thanks, I think maybe I should post about the protein testing bit in health

OP posts:
loopyloops · 11/08/2010 11:06

Actually, given the circumstances I would probably get someone else (GP perhaps) to ring the hospital and insist that they find you records and explain immediately. It is simply not fair otherwise.

DaisySteiner · 11/08/2010 11:06

Have you contacted PALS at the hospital. They normally kick arse. I'm shocked that your GP isn't chasing this for you though!

Original poster
moomoo1967 · 11/08/2010 11:07

My GP said that if that is what I was told that I should wait the 48hours then call and say about not wanting to dwell on it over the weekend. My GP is usually on the ball but is on leave after thursday.
DS who are PALS, I spoke to my consultants PA ?

OP posts:
ChippingIn · 11/08/2010 11:09

Jesus christ.

It's just as well you thought you had a bladder infection isn't it?!

Ring the PA again, see what has already been done. Insist that someone gets your records this morning and rings you back this morning - if necessary, mutter things like negligence, protocol, taking it further - waiting 48 hours is not acceptable.

Do you have anyone in RL that can be there with you?

I agree with Loopy, don't even think about the 'complaints' side of things yet (but when you do, we can help you write the letter if you like!!!!).

Original poster
moomoo1967 · 11/08/2010 11:09

Apparantly their notes are not computerised so that is possibly how long it could take

OP posts:
megcleary · 11/08/2010 11:10

The ca 125 may be raised due to the cyst / inflamation that may be of little reassurance, hope it helps though.

bigcar · 11/08/2010 11:12

PALS is the patient advice and liaison service. Every hospital has one, would second giving them a call.

loopyloops · 11/08/2010 11:13

No no, bollocks to that, they can find the notes.

PALS is the Patient Liaison Support team or something like that. My experience of them is that they are shit (Notts QMC) but should be able to help. I agree with what ChippingIn says, ring the PA now and insist on having info this morning, telling them that you will have to take this further. Then ring PALS and tell them that you need to know ASAP as they have the results and should be able to access them immediately if they have already been sent to the GP.

Good luck, let us know how you get on. And hard as it seems, try not to stress too much. xxx

Original poster
moomoo1967 · 11/08/2010 11:14

Yes my OH is being an absolute darling and I am supposed to be meeting a friend this evening for a beverage. HaHa I would love to see a letter that MNers had written.
ChippIn, I did let the PA know that I was not at all happy and thought that it was diabolical that I had to wait that long, I was in such a state too.

OP posts:
loopyloops · 11/08/2010 11:15

Oh, a word of caution, don't mention litigation or lawyers. If you have a complaint, if you explicitly say you are involving lawyers they are no longer obliged to provide you with all the info you need. And they can be sneaky.

Original poster
moomoo1967 · 11/08/2010 11:15

ok well I don't want to do it from the office phone so will have to wait til I can nip out to use a meeting room. We aren't permitted to have our mobiles on site.
I shall try the PA again and also PALS.

OP posts:
ChippingIn · 11/08/2010 11:16

OK

Maybe the GP only has a part of the story?

Maybe when they did the tests, they did other tests for OC and your consultant knows you don't have it, so there wasn't any reason to discuss it with you. Is that a possibility??

Original poster
moomoo1967 · 11/08/2010 11:16

thanks loopyloops

OP posts:
pinksancerre · 11/08/2010 11:16

So sorry you are having this stress and worry
PALS is patient advice and liaison service (deal with complaints/concerns) Whats was your planned follow up?

CA 125 can be raised with ovarion cysts and other gynae conditions including pregnancy. The association with malignancy is a level over 65.
If I was you I would ring PALS and ask them to sort it. That is rubbish that it takes 48hrs to find notes, the secretary is just being lazy and should be sorting this out

ChippingIn · 11/08/2010 11:19

Bloody hell - you are at work Shock

When you speak to the PA - insist on action, don't just say you aren't too happy waiting. No matter where the records are, they can be accessed this morning, if she shifts her arse and sorts it out.

Original poster
moomoo1967 · 11/08/2010 11:20

The GP said that they should have at least spoken to someone at the surgery. I have an appointment for another scan on 27th August and she said if it was that the test result was insignificant that they could have least have warned the GP not to alarm me maybe. But there was nothing, if I hadn't gone in today I would have been none the wiser. I am at work so posting may be sporadic

OP posts:
macdoodle · 11/08/2010 11:20

I think your GP was tad insensitive and overshooting the mark a bit!
CA 125 can be raised in lots of things and is a fairly routine test for an ovarian cyst, IME 60 is unlikely to be anything nasty (with any luck)! I am surmising this is why you havent been called back as they arent worried, and will send you a follow up appt in due course to discuss it with you.
Did you ask the GP to see the letter to see exactly what was said, you can do this you know, and may put your mind at rest to start with.

SanctiMoanyArse · 11/08/2010 11:23

I am so sorry and no woner you are scared!

Clearly I want to empahasise that it can be otehr things indeed, and you should at elast try and focus on that.

if youc an't, I would suggest macmillan as a good aplce to start for info a lot more reliable than that you will find on Google.

loopyloops · 11/08/2010 11:27

I'm not a doctor (but I think Macdoodle is??) but what I have read seems to indicate that this test is not a very good indication, as levels can be raised in a number of issues. Don't start to worry (if possible) until you know for sure. But you do need to know ASAP. Could your OH or GP make that call for you? And as for work, I'm sure you would be able to take 10 mins for something like this, whatever your job.

Original poster
moomoo1967 · 11/08/2010 11:27

hi, I have just called the PA again, and I feel as if I dreamt the telecon I had with her this morning !! I said to her " if the same thing happened again and I was rushed in with the cyst rupturing, you would have to access my notes then surely ?" she said "oh, I have your notes on my desk and I am just waiting for the registrar on call to come and look at them then she will call you " !!!!! grrrrrrrrr

OP posts: