Scared!!!

Hello I hope someone can allay my fears.  I'll try to summarise:  Firstly I'm 54 and pre menopausal, so I have put many symptoms down to this.  I had a UTI at the beginning of last August which was treated, three weeks later I had another, but the symptom of needing to wee all of the time wouldn't go away.  I was referred to a gynaecologist, who sent me for an ultrasound, the ultrasound showed a few small fibroids in my uterus and a small cyst on my ovary.  The gyny decided to send me for a hysteroscopy.  The doctor there didn't think I had symptoms that needed a hysteroscopy, but booked me in for a second unltrasound (2 months after the last), and because I was concerned about cancer as my mum and dad have both had cancer, she arranged a CA125 blood test.  I had these and received a copy of the letter she sent to my doctor.  She said the cyst had grown and I needed another ultrasound in 6 months to see if it had grown anymore or had gone.  The CA125 test showed the tumor marker CEA slightly raised, and she wanted this done again in 6 months time.  I went to see one of the GP's at my doctors and asked her if the raised CEA meant I had cancer.  She said not at all, it was only slightly raised and could have been raised due to a number of things. So that made me feel ok.  Then three weeks ago I felt a lump in the front of my neck under my adams apple, so off I go to the doctor. He said he thought it was a cyst, but would do some blood tests to check my thyroid, and arrange for an ultrasound on the lump (8th April).  Had my blood test done, and my doctor rang me and asked me to go and see him, which I did last Friday.  He said that I was aneamic and my iron count was very low at 8.  He put me on iron tablets and arranged for me to see the GI doctor at the hospital Wednesday (tomorrow), he was very concerned that I might be bleeding somewhere inside, and wants me to have a colonoscopy and an endescopy.  I asked him about the CEA test and he said it was an indicator of bowell cancer.  This has really knocked me for six.  I have a very poor diet due to having many many food allergies, which I put my tiredness down to, I've also recently had an anaphalactic shock (first one), and ended up in hospital.  I worry is that I'm the only carer of my elderly parents, and also my husband who is disabled.  I know the appointment is tomorrow but they won't test me tomorrow so I've got a few weeks of stress and worry ahead.  Why didn't they call me in when my CEA level was 'slightly high' for more tests?  Can it be high for other things? What other things?  I'm panicking here.  Thanks for listening.

  • Thank-you Sue.  I'm just being a ninny I know.  But thanks for replying. x

  • Hi sue

    I am scared too! I am 51 think post menopause had a bleed 3 weeks ago! Went to doctor, yesterday had a internal scan and she said could be polips and thickening of womb lining! Has referred me for a hysteroscopy. I am waiting for appointment now. But am feeling very anxious, I am really frightened in case I have womb cancer and am going to die!! Sounds dramatic I know but I can't stop thinking about it! Internet is full of info that is scary too!!! I haven't told anyone so feel quite alone but I don't want to worry anyone until I've had this done . I hope you are ok and totally understand how you are feeling,. When Is You next appointment ? 

    Debbie xx 

  • Hi all

    Many if not all of these tests are notdirect tests for cancer but are indirect measuring proteins that are a response to inflamation for example.

    I know the ca125 one most as it was the major marker determining treatment for my wife's cancer. At one point she switched to using almond milk and her ca25 shot up until she stopped.

    Looks similar with CEA and that things like irritable bowel sydrome can cause raised levels.

    see here: labtestsonline.org.uk/.../

    Susan, I note with interest that you said that you've had numerous food allergies - I would think that in someone like yourself a slightly raised CEA count could easilly be unreliable.

    Of course these tests can be unreliable in the other direction too for example it is possible for someone to have ovarian cancer but not show an elevated ca125 score and I would imagine the same is true for CEA.

    These tests are not perfect but they are the tools we have right now

     

  • Hi Debbie, I really do understand how you feel.  I just can't let my family in on it all as I don't want them to worry as it may be nothing.  My appointment with the consultant is tomorrow (Wednesday).  Maybe some people would think we are being dramatic, but it's a real fear so why is it dramatic!  Good luck with your appointment, I hope it all goes well for you and it's a simple fix. xx

  • Thank-you Graham.  Your reply has helped me tonight as I'm really nervous at the moment.  It was the CEA result that had thrown me.  I have a condition that means I can't eat uncooked fruit, salads, vegetable (not that you can cook salad. LOL); I'm also allergic to nuts and have to carry an EpiPen as I've had an anaphalaxis shock earlier this year.  Bananas just go straight through me as well.  I'm also allergic to animals, and ibuprofen.  It's just upset me that the CEA is a cancer marker for the bowel, and I have low  iron anemia which the doctor believes is because of internal bleeding, and he wants to rule out bowel/stomach cancer.  I appreciate his honesty but .............

  • Well as I say a slightly raised figure on these tests can be misleading at the best of times but in your case I'd say it probably means nothing either way, you might have has the same score all your life.

    Of course that doesn't get you any closer to identifying the cause and as I say you can have cancer with a perfectly normal score not every patient comes in with obvious symptoms that are easy to diagnose - I guess your doctor is doing what he can to pin it down with the tools at his disposal and your condition makes that tricky.

    I hope you get a quick diagnosis but I agree it doesn't really look like that's awfully likely so deep breath and  have the strength to change what you can, the fortitude to bear what you cant and the wisdom to know the difference!

  • I haven't really got any real answers, but I feel a little calmer.  I'm having the endescopy and colonoscopy in the next two weeks.  The consultant said the same as you, Graham, about the CEA result.  He also said I had a lot going on with various things this past year, so he wants to rule out cancer.  He said the internal bleeding could be an ulcer or polyps.  Things are starting to move now so I'm feeling a bit better, although my heart is still racing at times.  Thank-you for your kind words.

  • Hi Sue, I'm having my colonoscopy and endoscopy in the next two weeks so hopefully will know more then. The consultant says there are lots of conditions that can give me these symptoms, but he wants to rule out cancer.  I'm still worried but not as panicky. x

     

  • Hi I just wondered howyoi got on . I am going through exactly the sameness thing at the moment . Awaiting biopsy results next week