I have had a ca125 blood test and it came back as raised

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Can anybody help I have recently had a C a25 blood test and it has come back as raised I have also had an Altra sound and have got a fibroid I'm just worried

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  • Posted

    Well you need to get an MRI so that you can see how many fibroids you have and the location. I suggest you get treatment soon. I just had myomectomy and l had 20fibroids removed. It was not an easy surgery because of anemia, l lost a lot of blood and l had 4 units of transfusion. You can do UFE depending on your fertility goals
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  • Posted

    Hi Louise

    Sorry you have got fibroid. I know how worrying it can be to get the CA125 blood test results.

    Presumably you got these results via the GP?

    Now you have positive test results you need to ask for a referral to a Gynaecologist to discuss your treatment options.

    Treatment will depend on your age, need to preserve fertility, personal choice, etc.

    There are several options UFE, myomectomy, hormone therapy (can have horrid side effects in my experience) or partial or total hysterectomy if you no longer wish to conceive.

    My advice is to do lots of research and get support from this site, there are lots of us going through the same journey and although we cannot take the pain away it's always good to talk to people who understand exactly what you are going through.

    Good luck and keep in touch

    Julie

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  • Posted

    Hi Louise,

    Please don't worry. The exactly the same thing happened to me. The reason the CA125 test can be raised is actually due to having a fibroid, and if you have had a scan and it is only a fibroid it is nothing to worry about.  It is understandable to be worried when you first find out these things I was at the time. I had more that one fibroid.  All you need to be concerned about is if the fibroid is causing  you any symptoms. Many of them exist and cause no bother and can be left alone.  Do you know what type of fibroid it is and the size? (it can be one of three types - submucosal, submural or subserosal) depending on where it is.                                  

    Try not to worry. There are many options even if you do need to have treatment.     

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    • Posted

      Thats a good question to ask when you go back. They should know from the ultrasound possibly. I have a 5cm on the outside of the uterus. In my case it is not a problem. Left it alone.

      Outside of uterus - subserosal

      Inside the walls of uterus - submural

      Inside the uterus - submucosal - Can usually be removed via hysteroscopy if under a certain size.

      Good luck 

      x

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    • Posted

      Those CA125 are not very accurate for whether you have anything serious or not as they can be raised for many reasons. Mine was raised & the GP scared me a bit but the Gynaecologist felt the GP was overacting as it turned out it was only fibroids and he said it wasn't very high.  I think they are more of a marker for when people actually have a serious condition in telling if it has changed in anyway. Good luck Monday.  

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    • Posted

      Hi she'll. I have been to the hospital and he has advised me to have a total hysterectomy As I have got fibroids and heavy periods and slightly raised C a 1 to 5 blood test so I go in on the 8th of August x

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    • Posted

      Hi Louise. I would say make sure that is the right decision for you. The information you have given does not mean hysterectomy is the only option. I know from experience that the first thing surgeons say when you visit is 'hysterectomy' and I wonder if that is just because they are getting rid of it all in one go and there will not be any more problems for them. I certainly felt it was mentioned every time to me and yet I have improved my situation with a submucosal one being removed via hysteroscopy ( the main ones that cause heavy periods) and then taking eysma for some months. I now have lighter periods. I still have fibroids but they are not affecting my life now. Of course we are all different - maybe yours are larger but if you are in any way apprehensive of surgery then ask if there are other ways first such as removal of submucosal ones if you have any. You could then try eysma tablets for a while to prevent surgery ( your choice).  You dont say what your CA125 is, mine was slightly raised but it was because of the fibroids. Hysterectomy should be last resort. Once it is done it is done.  Are you near menopause?   I feel people are pushed into hysterectomy, I certainly felt this myself. Of course if it is right for you and there are no other options tried or not tried then it may be right.  Just be sure.  Did you ask about other options like hysteroscopy to remove some (if they are small enough and submucosal) and eysma tablets? Just to rule out first.  Good luck with the right decision for you. x ...Maybe you could telephone the office or email before the surgery date if you don't have another appointment or maybe you have discussed these things.   

       

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    • Posted

      Hi she'll.I have the ca125 test yearly as I lost my sister to overion cancer 4 years ago. She was only 39 so I have it checked yearly .I never expected it to come back as raised It was 58. I have 2 Beautiful daughters age 25 and 15 I'm 48 so don't want no more children i do get very heavy periods quite painful i hope I'm doing the right thing

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    • Posted

      Hi Louise, Sorry to hear that. I cannot believe our similarities.. I also lost a sister to ovarian cancer.  This is why we were both offered the CA125 Test in the beginning I expect as not everyone is. It does not determine if you have ovarian cancer though as can be raised for lots of things including fibroids as my gynaecologist told me and I researched online. A tumour will be determined if they do further tests such as an MRI to see a photography of your pelvis.  I paid for my own MRI asap privately as wanted the peace of mind as soon as possible. The ultrasound can scare you as they cannot see images properly, to see if it was just fibroids or if a tumour.  I was worried like you because happened to my sister. Of course it doesn't mean it will happen. My other sisters have not been affected either.  There is a gene BRCA to determine if you are at increased risk of ovarian or breast and in those cases women have preventative hysterectomys. This can be tested for first. I would not have a hysterectomy because my sister had ovarian cancer. I would be screened via scans. I can understand you are frightened and I was very much so until I had the MRI. Have you not had an MRI to confirm ?  The Drs should be doing this.  Of course it is your body, we are all different. I would be more frightened of surgery than having fibroids inside me that may reduce after menopause as long as I had the MRI to see there were no tumours on ovary or in uterus though. Maybe for you it is preventative to stop you worrying in the future because you have children.  Unless you have the BRAC Gene you may not be any more at risk of developing ovarian cancer. We all deal differently. My ca125 was 42, still slightly raised. I was told they can be in the 100's. Your ca125 is raised because you have fibroid(s) by the sound of it. If  you have had a scan and no tumour is shown that is why.  Good luck x    

      'About 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease.The most significant risk factor for ovarian cancer is an inherited genetic mutation in one of two genes: breast cancer gene 1 (BRCA1) or breast cancer gene 2 (BRCA2).'

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    • Posted

      I'm so sorry you lots your sister to. I did go to the genetics clinic and I was negative to the BRCA1 and 2 but they said in the future I may have BRAC 3 4 5 when they have discovered it and they advise me to have a hysterectomy four years ago but I just had yearly checks . I don't expect it to come back as raised and it has scared me so I think it's time to get it all out and have peace of mind . How old was your sister when she found out she had it . My sister found out and 2 weeks later she was gone it was hart Breaking x

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    • Posted

      Sorry to hear that Louise, that was very quick. Must be very shocking and yes heartbreaking too. My sister was 49 when she discovered a lump. She had a hysterectomy hoping it would remove all cancer, but it had already spread. They suggested chemotherapy then but she had an adverse reaction and couldn't keep on with it. She then had some radiotherapy. She passed 18 months later. Very heartbreaking. She had grown up children.  Terrible thing is that before she found this lump she was having gastric type troubles and her doctor thought she had an ulcer and was trying different diets etc. There is much more awareness now that these symptoms and bloating etc can be ovarian cancer and must be checked out. I think they could have got to it sooner before it spread but not enough awareness and Doctors never assume worst they rule out silly little things first wasting time. Money plays a part I think as wont pay for costly scans unless you push for them.   Did your sister not have any symptoms until that late stage? That is possible I suppose as they do call it the 'silent killer'. as there is often not many warning signs. I think they are bringing out a new blood test in the future that can detect. CA125 is a marker. It doesnt mean you have it. x 

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    • Posted

      Bless her x my sister was going to the doctor with bloating and constipation and they was treating her for IBS so my other sister took her up to casualty and then she got a scan and said that she needed a history to me straight away.she went down to theatre and the doctor opened her up and close to back up again as the cancer had spread all over
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    • Posted

      Oh, how terrible. It was the same sort of symptoms, IBS Type symptoms that my sister had too. This is obviously a warning sign. I have seen it on leaflets now. There is more awareness I hope and if not there should be. x So sad.

       

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