What should I do next???

[gromit]

Recent TVS showed cyst with some internal echoes (???) Ca125 of 145 and basically constant bleeding since Oct11. Follwing result of Ca125 referred to Gynae. Appt was last Friday. Consultant called away so saw registrar. Told me my Malignancy index was 145 thus under 200 and not high risk. Examination by the doctor and then told no point doing anymore scans or blood tests and he will discuss with consultant and to come back in 2 weeks.

I came away from appt feeling ok but still have moments of anxiety. Are they staying that there is definately nothing sinister going on??? Can they know for certain??? Can anyone suggest how I should apprach next appt? Should I expect to be looked at further - at least see what CA125 is doing?? My mind wonders from OK reckon I am ok to OMG what if I slip through the net.

I am 42 and appreciate that I probably am low risk but can I afford to be complacent????

Any feedback would be appreciated... I am trying not to be hysterical but as I said neither do I want to slip through the net just because statistics suggest I am low risk xxx

Sarahxxx

[Hidden]

Hi Sarah,

I don't think you are being hysterical. I would take a deal of comfort from the signs being that there is unlikely to be anything sinsiter going on, but also be vigilant. There was no equivocation when I was diagnosed. On exam and blood tests, the gynaecologist told me I had ov.ca. - but it was a stage 3c! My ca125 was 600+.

It is most likely that your ca125 is elevated as a result of the cyst, and that it is not cancerous. I don't think 2 weeks will make much difference, if any. When you go back, ask about cancer and arrange to go to your gp and have your ca125 taken regularly (monthly) at the very least, until they get to the root of the problem. Hopefully they will have some more fruitful ideas then.

Very best wishes,

Isadora.

[gromit in reply to Hidden]

Thanks Isadora. Good advice and really appreciatedx

Keep well

Sarah

[wendydee]

Hi Sarah! It sounds as if it's good, but have you been given the name of a specialist nurse at the gynae dept? I always find I get more sense out of them! It may be worth giving the specialist gynae/oncology nurse a ring to clarify the position. It may well be that a watching brief is the best thing, but while you are worrying you cannot put your mind to other things, I should think.

Or there is always the Ovacome helpline nurses on 0845 3710554. They may be able to explain further for you

Love Wendy xx

[Pollywollydoodle]

Hi,

Hope you're not going too stir crazy. I was 43 when diagnosed with ovca and ca125 was 87- consultant said it was suggestive if the cyst looked suspicious on TVS and mine did- huge and septated! - they seem to look at the whole picture cysts, blood results and scans.

I was told anything over 35 on Ca125 was not normal but that other ordinary things like inflammation and infection could raise also raise the level.If they are worried it may be malignant they will biopsy it and the consultant would decide that when you see him in two weeks. Don't be fobbed off by the registrar next time, insist on talking to the consultant or you worry that you haven't got the whole picture. Good luck with everything.

Polly x

[poleglass]

You cant be vigilant enough as my ca 125 rose from 25 after treatment to 59 in april got results of my cat scan last tuesday and tumours are worsr than before Will have my bloods done before chemo so will be interesting to see what my marker will be at now.so the ca125 obviously isnt a foolproof indicatorI start more chemo on monday Will be doing my bloods before chemo so it will be interesting to see what my tumour marker is at now..una belfast x

[RuthPOvacome]

Dear Sarah

This is obvously a difficult time for you and you must feel encouraged that they are hopeful it is nothing too serious.

However something is not right that causes you to bleed all the time and obviously that needs sorting out whatever the cause. it might be an idea to see what the trend is with your Ca125 as if it is going up all the time there would be more concern. Please do feel free to give us a ring at Ovacome if it would be helpful to talk things through 08453710554.

The risk of malignancy is a combination of the Ca125 with the persons menopausal status and the appearance of the ultrasound scan

Best Wishes

Ruth

[gromit in reply to RuthPOvacome]

I have an appt with consultant next Friday where apparently they will have a "plan" of what to do next. I would love to go to that appt armed with another ca125 - whatever the result surely it would affect the decision of what next and how soon - be it stay the same, go up or go down.I actually work in a gp surgery so could get done pretty easily. I would imagine at the appt thye will ask for another to be done anyway...more waiting. Just wish I could be more proactive. Had 2 really sharp pains that felt like they were in my back passage last night. Probably all unconnected but just getting more and more worried and paranoid about every ache and pain!!

[RuthPOvacome in reply to gromit]

It is really hard waiting and it is understandable that you imagine that every ache and pain - that you might normally not have noticed -is things getting worse.

It will be useful to know what the plan of action is going to be because at least then you will know that something is happening.

If you have another Ca 125 done the trend may give some indication of what is ocurring. As you say having to wait for a longer for yet more results is very hard.

It sounds like they are getting quite a few people together to discuss the best treatment for you.

Do give us a ring if you are able

Best Wishes

Ruth

[gromit]

Update... seen consultant today..without even laying a finger on me he told me basically there is nothing wrong with me. My Ca125 of 142 is irrelevant because the normal range of less than 35 only applies to post menopausal women. He said that GPs asks for test without really knowing what they are looking for. I have a 3cmx3cmx4cm cyst with internal echoes which he said will prob have gone in 2 months (another scan booked). Feels my coil has causing basically constant bleeding for 8 months (copper).....He has allowed me another blood test to help put my mind at rest. Does this sound fair enough with regards the ca 125 and the lack of further scans....