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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:
Original poster
moomoo1967 · 11/08/2010 11:29

oh and my OH would no doubt pale significantly if I told him that the protein shows up when someone is pregnant !! Grin now that could be quite funny

OP posts:
pinksancerre · 11/08/2010 11:30

Glad you are going to hopefully get some answers.

Original poster
moomoo1967 · 11/08/2010 11:32

My boss knows my situation and doesn't mind me calling, its just a case of finding an external phone in a private room that is not booked for meetings.

OP posts:
loopyloops · 11/08/2010 11:35

Good luck xxx :) :) :)

Original poster
moomoo1967 · 11/08/2010 11:36

Thank you for all your replies, you have made me realise that maybe its not as bad as I had first thought. xxx

OP posts:
ChippingIn · 11/08/2010 11:37

Stupid cow could have phoned you and told you that... clearly employed for looks not brains. See, just goes to prove the 48 hours stuff is complete BS! [Good news though!!!]

I think you should tell your OH that tonight -just for a bit of light relief you understand Grin.

Original poster
moomoo1967 · 11/08/2010 11:43

lol ChippingIn yes you could be right there, and yes i will do. I am meeting up with him later so might be too good an opportunity to miss to see him sweat Grin especially as we have 5 children between us !!

OP posts:
thehappyprince · 11/08/2010 11:45

Seconding MacDoodle - try not to worry too much, agree actually your GP was pretty alarmist and unhelpful. Ca125 isn't a diagnostic test and can be raised for many reasons. And 60 doesn't sound terribly high in any case. Still, hospital should have explained what blood test was for. Hope you get to speak to someone soon to clear it up.

ChippingIn · 11/08/2010 11:57

You have 5 between you - but none together yet Grin

Original poster
moomoo1967 · 11/08/2010 11:59

now now ChippingIn don't even go there ! Smile

OP posts:
2rebecca · 11/08/2010 12:07

If the Ca125 test wasn't done by the GP then I'm surprised he mentioned it and didn't wait for the hospital to follow the test up and explain the results to you.
I agree that tumour markers like Ca125 are just tumour markers and can be raised by other things. I'd want to know whether the GP just accessed the blood test or whether he had a letter from the consultant discussing the blood test. If the latter then the hospital shouldn't have written to the GP before discussing things with you. If the latter I think the GP would have been wisest not to mention the blood test and was alarmist in the way he did mention it.
This can be difficult if patients come to see their GP wanting the results of tests done at the hospital rather than waiting for the hospital to follow them up, but if this wasn't the case mentioning the test seems unnecessary.

littleshinyone · 11/08/2010 12:07

depending on other factors, 60 really is't that high. and 7cm really isn't that big in the scheme of things (sounds hard to believe, i know). And it is routine, and good that they're thinking about it TO EXCLUDE IT.

it's a VERY non specific test, that causes this sort of (totally understandable) worry all the time!

i think your GP should also take some of the brunt of this shock. for mentioning the 'C' word in a 10 min slot without full information and leaving you with that bombshell.

good luck!!

2rebecca · 11/08/2010 12:09

Second bit of second paragraph should have said "if the former..."

noteventhebestdrummer · 11/08/2010 12:10

try not to worry too much, my CA125 was really high and in the end they found I had a lot of infection in the cysts but no cancer (post hysterectomy arse-of-a-surgeon said 'the pathology was normal' which took me too long to decode, I suppose I was in a morphine-fog)

Original poster
moomoo1967 · 11/08/2010 12:22

well on the last scan in June, they confirmed that the cyst had grown and that I had an infection in my tube. Originally I had asked if they cysts could be cancerous and was told that there was no blood supply to the cyst so it wasn't. Which is why I think I was so shocked this morning when the GP mentioned the letter that was saved in my notes from the hospital.

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

No news yet?

I'd ring the PA again if it was me.

It does sound very, very unlikely to be cancer though, given everything you have said. But it would be nice to hear it from registrar.

2rebecca · 11/08/2010 16:33

If he's a gynaecologist he may be in theatre.

ChickensHaveNoEyebrows · 11/08/2010 16:38

I think your GP is out of order, tbh. She seems to have jumped the gun somewhat based on a non-specific test, and scared you witless in the process.

BreastmilkDoesAFabLatte · 11/08/2010 17:53

What the %&^@?????

You're told that you might have cancer and then left to do the legwork with phoning for your notes?

From the sound of the advice you've been given cancer sounds unlikely, but this is so out of order.

I really hope the registrar will talk to you ASAp.

Original poster
moomoo1967 · 12/08/2010 08:47

Morning everyone, I still have not had a call back so I have left a message for my GP. I realise that the registrar is probably run off their feet but surely it would only take 5 mins to tell me what my notes say.
The reason the GP suggested I call yesterday was because she was with patients all day and I was in a bit of a 2&8 so she thought I might get to talk to someone quicker than she would.
If I haven't heard from anyone by 11am this morning then I will call PALS and see if they can intervene.
Its a bit complicated today as I am finishing work at 12noon to go and sit on a train for 2 and a half hours to collect my DD from Grandmas and then travel back down so I hope there are too many phone black spots as is normal.

OP posts:
Original poster
moomoo1967 · 12/08/2010 08:51

I am going to try and call the PA after 0900 too. I think the whole thing could have been handled far more sensitively on all sides and my OH is absolutely livid.
ChippingIn I did say to him that the test can be an indication of other conditions, he asked what so I said errrmmmmm pregnancy, you could see him visibly pale and he is of Jamaican origin Grin but hey ho

OP posts:
whostolemyname · 12/08/2010 08:56

I agree your GP is the one who has jumped the gun a bit here. She is unlikely to be any busier than the registrar at the hosptial. If she was concerned she should have phoned them then and there in front of you and followed it up with them and you herself. It is outrageous that she said what she did to you without having proper information.

2rebecca · 12/08/2010 08:57

That's a shame, even if the relevent registrar was on call (I wouldn't expect this to be dealt with by the reg on call but by the consultant you are under's reg who may or may not be on call that day)or in theatre I would have expected a phone back that day from someone. Some hospital doctors work between hospitals in our area though, but in that case the secretary could have phoned you back and said that no-one from the team was around to tell you anything today but they will when they are around.
Did you clarify with the GP exactly what was said in the letter?
With a slightly raised Ca125 and ovarian cyst they may be waiting to repeat the blood test and scan to see if the cyst settles and Ca125 falls. If they thought it was definite you had cancer they'd be getting you in for an urgent operation and would have wrote to you telling you this when the GP was written to.

loobylu3 · 12/08/2010 08:58

I just wanted to second/ third what the other Drs on the thread have said so far. It sounds as if your GP was jumping the gun and her communication was at fault unless she had some clear correspondence from the hospital, which seems unlikely. The Ca125 by itself (at that level) is not diagnostic of cancer.
The hospital should be able to all you back today and failing that, I think it is reasonable to ask your GP to call on your behalf as it is important that the situation is clarified.

edam · 12/08/2010 09:02

The hospital should have written to your GP - did she have a letter from them explaining what is going on?

Doc was a bit insensitive using the word cancer but hospital have really not handled this well at all.

You could try calling Cancer Research UK for reassurance/more info.

HTH

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