I had symptoms of ovarian cancer 7 months ago and ultrasound scan and CT were normal - symptoms have continued - see below

I am a 39 year female - In December last year I suddenly lost my appetite and vague abdominal pain at that time I presented to my GP and he arranged ultrasound - transvaginal and abdominal - ultrasound found nothing abnormal detected. A few weeks later I had a follow CT scan with contrast and other than one small lymph node which was visible (Doctor put this down to the fact that I had a chest infection at the time). The loss of appetite has continued, I have some back ache which seems to move from side to side and am bloated but not constantly, abdominal pain continues to come and go - now 7 months on I have colonoscopy and gatroscopy. Gastroscopy showed hiatus hernia and colonoscopy showed flat 30mm polyp (biopsies have come back as benign) which I am awaiting removal of. I questioned with my Dr about the symptoms being those of ovarian cancer and he said but you had a clear CT 7 months ago. Although he now has arrnaged abdo U/S and has done blood markers - is it reassuring that all scans were negative 7 months ago?

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  • I would feel very reassured by that, Lindsey. The ultrasound and blood tests should be more definitive, but you had the symptoms before the CT scan and it showed nothing, so they are probably something else.

    Are you likely (from family history) to be going into menopause early?

    I hope you get an answer soon.

    Isadora.

  • Thankyou for you quick response Isadora - I dont think that its early menapause. Theconcerning thing is the bloating and loss of appetite really - I do eat but because its time to eat rather than because Im hungry. The bloating does seem to come and go and my weight has stayed stable. Guess I just want someone to give me answers but will have to wait for blood and scan results - Is a CT scan a definitive diagnosis tool for OC

  • Hi Lindsey,

    I'm sorry you're having such a worrying time. It may help you, and your medical team if you download the Ovacome BEAT symptom tracker while you're waiting for your scan and blood test results. There is a lot of evidence that the CA125 blood test is not conclusive, but all I can say is that mine was 545 before my op for OC and is now around 12, it has been between 16 and 8 in the time since my op. On this site there are a lot of women who are diagnosed with the CA125 blood test (raised levels) being a back up to scan results along with the other symptoms. With me, I felt hungry, but after eating about a quarter of my normal portion, felt really full and needed to go to the loo immediately. It may well be that there is something else causing your loss of appetite and I'm sure the medical team will have some answers soon.

    All the best

    Love, Wendy xx

  • It sounds pretty reassuring to me. I would wait for the results and try not to worry. Easily said I know, but they seem to be doing all the right things. My very first u/s showed a massive tumour on my ovary - it was un-missable.

    The CA 125 test is not always conclusive, but is a good indicator for some women - mine was @1145 before my surgery [happily it now remains around 9]. Wendy's idea is great - fill in the BEAT tracker.

    My worst symptom [before extreme bloating where I rather resembled a Puffer fish] was *extraordinary* tiredness. Not usual tiredness, but literally as if I could fall asleep in a moment. Then it would pass. Very wierd. I could eat no problem and had no other symptoms - the only reason I went to the GP at all was because I had a lump in my abdomen. I thought I had a hernia ;)

    Best of luck - Sx

  • Could I ask you lovely ladies - my bloating comes and goes but the loss of appetite is constant. The bloating that is described in the beat symptoms is constant - is this what you all found - thankyou so much for your responses. I live in Australia and all of my family other than my hubby are in the UK I feel like at the moment I have no one to share/offload my fears with.

  • Oh and when I had my ultrasound today they asked me if I was taking any hormone replacements - why would this be significant - Have neve been asked before and I dont take anything.

  • Dear Lyndsey

    I am one of the support line nurses at Ovacome and am sorry to hear about the problems you have been experiencing. If you would like to talk things through further do please give us a ring on 08453710554 Mon-Fri 10-5. When you had the transvaginal and pelvic ultrasound did they visualise your ovaries? - If your ultrasound scans, CTscan and C125 blood tests are all negative it is unlikely to be ovarian cancer and probably your symptoms could be expalined by the hiatus hernia. Do get back to us if we can help further.

    Best Wishes

    Ruth

  • Hi Lyndsey

    Ruth's right - if all those things are ok, it's probably something else. My bloating was constant and became more severe every day until I had the surgery. My tummy was very hard, and my waist disappeared as I thickened around there as well. I am in touch with about 30 other women who have had / have OC. All of them had the same experience. The bloating doesn't go away until after surgery.

    I hope all this info is helpful and making you feel a bit less worried. Sending lots of good thoughts your way

    Sx

  • If the pain is in the lower regions, and you are testing clear for OC, then have you considered endometriosis. It's symptoms can mirror that of OC in many ways.

    But the pain is often more intense (sometimes excrutiating) around the time of your period. A week before, during, and a week after.

    Keep a diary of the symptoms you are feeling over the course of a month. If you notice that symptoms get worse during menstruation then calm down a week or so later for a few days before flaring back up again, then odds are it is hormone related and your Dr should consider offering you a laparoscopy to investigate for endometriosis.

    It can only be diagnosed by having surgery, even if it is suspected that it might be. Not everyone with endo has cysts, and unless you have cysts, endo is most unlikely to show up on scans. Mine didn't apart from cysts.

    Endo has a huge range of symptoms because it can grow just about anywhere it wants to make a home. some women have no symptoms at all.

    I had recent surgery for suspected OC after a few scans and blood tests and ended up with stage 4 endo, so severe it could not be removed completely. Until very recently when the pain became unbearable, I was chugging along with very little indication that anything was wrong inside, never mind that all my lower organs were now stuck fast to one another with endo! My biopsies have come back with a borderline diagnosis so I am hovering on the ovacome board incase I need further help. I am also in medical menopause now having had major surgery.

    Endo and OC have a lot in common. With both, women usually end up having to face surgery to remove organs, menopause (whether surgical, medical or natural) and long term post op recovery with some darned powerful medication.

    Younger ones with OC or endo face similar tough decisions about fertility etc.

    Of course it might not be endo, but with up to 10% or the worlds female population having endometriosis to some degree, It must be a possibility to consider for your symptoms. Best of Luck getting a diagnosis asap.

    The quicker you know what you are dealing with, the sooner you can fight back.

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