large tumour on ovary ca125 test 25 should i be concerned about a low reading

hello i am 42 years old and have completed my family.

after a post op ct scan following a non related operation it was discovered i have a large tumour mass on my ovary. consultant didnt have my ct scan at emergency appointment ,but after an internal and external examination told me i will need an op in 2/3 months .he says hes 80/90 per cent sure it isnt malignant but cant say for sure until i am opened up.. we have agreed to a removal of affected ovary but he thinks it wise to do a full hysterectomy to prevent future issues..should i be concerned about the timescale before op and be at all concerned with my ca125 result of 25 even though its within normal range.answers appreciatated/ advice please.

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  • I am one of the support line nurses at Ovacome and am sorry to hear about the problems you have been experiencing. I will try and answer your question as fully as I am able but do please feel free to give us a ring on 08453710554 Mon-Fri 10-5.

    Given the fact that no one can be 100% sure what the tumour is, it seems that waiting 2-3 months is a long time. Under the circumstances you should be fast tracked so that surgery can be undertaken as soon as possible so that you know one way or the other exactly what it is. Although the fact that your Ca125 is not raised is encouraging, cancer hasn't been completely ruled out. I wonder if they are going to get back to you when they seen the CTscan? Make sure that you are seen by a gynaecolgical oncolgist - a surgery who does surgery for any gynaecological problem which might possibly be cancer. This is not to suggest that I think that you definitely have cancer but if there is any query about the tumour this is the type of surgeon who should be doing the operation. This message is not meant to cause you concern but to make sure you get the right treatment with the minimal amount of waiting time. If you have any further queries don't hesitate to get back to us

    Best Wishes

    Ruth

  • I would definitely agree with Ruths answer above as I was in a similar situation to you in October 2009 with a large mass and a CA125 of 25. My surgeon didnt think the mass was malignant but I had a full hysterectomy within 2 weeks and it did in fact turn out to be a malignant tumour at an early stage and of the type that didnt raise the CA125 marker. It was staged 1(c) as there were some cancer cells in the fluid in my abdomen. I had 6 rounds of chemo as a precaution and have been disease free since. I don't want to scare you but I do feel you should not be having to wait for 2/3 months for an operation. It should be done as soon as possible. Hopefully the cyst will be benign and it will put your mind at rest. If not, the sooner it is sorted out the better. If I can help in any way do send me a message and I will get back to you and do ring Ruth at Ovacome. They are brilliant - so helpful and knowledgeable.

    Take care.

  • I would strongly agree with the two previous answers. You need to be assessed by a gynaecological-oncologist. A 2-3 month wait for surgery is not the usual time-frame.

    The responses above have highlighted the fundamental flaw with the CA125 test: it can be an unreliable marker in some women, especially when a cancer is at an early stage. This is why you are being urged not to delay.

    Better be safe than sorry.

    I hope that you have a good outcome.

    Best wishes

    Isabelle

  • Totally in agreement with other ladies, get it checked out by oncologist as soon as possible. I am BRAC1 carrier and was diagnosed last Aug with stage 2C OV. I was part of a screening programme and my CA125 never went above 24. My cancer was only discovered after a prophylactic oophorectomy, I was very lucky and the CA125 test was not a great maker in my case. I had free floating cells in my abdomen too so needed 6 cycle chemo.

    Every case is different and not every tumour is cancer but do get a second opinion.

    Best Wishes

    SARAHM

  • I would concur with all that has been written so far-get an appointment with an oncologist as soon as you can. Hopefully it will be nothing to worry about but I did not have particularly raised CA 125 and actually had a very rare tumour that did not raise levels. Having had an hysterectomy and oophrectomy, it was only then when the tumour was examined was the malignancy discovered. Good luck!

    It is a shame though that we all seem to have to be really pushy to get treatment.

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