Sorry to be a pain again!: Has anyone been told... - My Ovacome

My Ovacome

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Sorry to be a pain again!

Smith123 profile image
12 Replies

Has anyone been told there scan results were nothing to worry about but when they had surgery it was a different story??? I was referred urgently to Gynae as some of you may know a few weeks ago after scan showed ovarian enlargement and nodules on both ovaries.. However when I was scanned by consultant he said there was nothing sinister and couldn't see any nodules but because I have been having so much pain and symptoms he would remove my right ovary... I still feel there's something not right he has refused CA125 said it can be false reading

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Smith123 profile image
Smith123
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12 Replies
charlie12 profile image
charlie12

Hi there

Sorry you are having this worry.

I was told that my mass was nothing to worry about and on that basis delayed my operation for 2 months to go on a holiday we had booked. The rest is on my profile, it may have been that the borderline bit grew while we were away or as there along....I never got a proper explanation.

Sorry if I have confused things ...get the cyst out ASAP would be my advice.

Love

Charlie xxx

Smith123 profile image
Smith123

Thank you Charlie its a 4 month waiting list. I just found it weird one doc thought it was urgent and another wasn't bothered.. I think wee know our own bodies though... Thank you again

Cathy x

wendydee profile image
wendydee

I would want more info and an urgent referral. I don't know how you would get that, but it may be worth ringing the Ovacome helpline on 08453710554. I am sure Ruth would be offer some suggestions or reassurance.

All the best

Love Wendy xx

Good advice from all above. Don't leave it - ask for a second opinion if they aren't answering your questions to your satisfaction. I'm afraid the medics can be misled, and if your intuition is telling you they are not right, get it checked out.

I would also insist on the ca125 - it's not foolproof, but part of the picture. Your GP can take it for you, and it is considered elevated if over 35.

Ruth will tell you about how to get a second opinion.

Very best wishes,

Isadora.

osborne1963 profile image
osborne1963

I agree with Isadora. Heed her advice

jackiexxxx

This is just not good enough. I think I gave you the link to the NICE guidelines in an earlier post. You have to make a pest of yourself and insist they are followed and that you get a CA 125 test. Can you take anyone along with you to your appointments? The MDT at the City Hospital are the ones who should be looking at your case.

I hope you get some answers and some action soon.

Linda xx

Smith123 profile image
Smith123

Thank you Linda I will seek some advice on this x

ladygooner-uk profile image
ladygooner-uk

Hi there, I was sent to the hospital on the fast track programme, but was told that my problem was an ovarian cyst as my CA125 was only just over normal levels.

i eventually presented myself at A&E due to constant pain and i was admitted and operated on within the week.

sometimes you have to push the system, good luck and keep hassling- its your body.

sue

Immediatelly after surgery as well as before I was told no evidence of cancer but the histology came back 2 weeks post surgery that I was Stage 2a high grade serous ovarian cancer. So go for your 2nd opinion until you feel satisfied . Ruth on ovacome is a good medical support line to follow.

Sue

Amanda-Jane profile image
Amanda-Jane

Hi,

I was on the UKFOCSS study and a rise in my CA125 was the only clue there was anything wrong.

My CA125 levels had been slowly rising for a few months and I was offered preventative surgery, by removing my fallopian tubes and ovaries.

I opted for the operation. There was no sign of anything on the CT scan I had before surgery and no suggestion that I may already have OC Cancer.

When I got the results from the operation I was told I had Stage 2c high grade serious OC Cancer.

I then had a full hysterectomy and chemo.

I do understand the CA125 can give a false result, but it was a potentially life saving blood test in my case.

Hope this helps.

Kind regards,

Amanda x

sem10 profile image
sem10

Hi Smith

I was also told my tumours were a result of endometriosis after scans but turned out to be stage 3 borderline cancer so don't let doctors fob you off if it's not life threatening you don't mind being wrong but it could be something more serious . I now have learned to go on edge of caution when your health is concerned . You only get one chance at life .

Take care and I hope all turns out well

Sen10 xx

postmistress profile image
postmistress

you have the right to know what is going . Sometimes doctors can be a pain. After I had almost finish my chemo for colon cancer , the doctor came and said my cancer might have come back. My blood global was High and I could not have anymore treatments. I asked him if this could side affect of chemo. He said yes. Now why would he want to scare me like that?I have been feeling fine since iLeft chemo and I had a lot of side affect. I been for some test having results in two weeks. I am scared. Praying a lot , husband is concerned too. Hes coming with me when I get my results. Diana

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