No more tests after normal CA125 and abnormal ultrasound scan

Dear all,

My first ultrasound scan last December showed that there is one small fibroid, and the other bigger 'suspected fibroid' mass. The doctor didn't say anything but asked me to do ultrasound scan after 3-6 months. I did after 8 months. They are slightly bigger, but the ultrasound scanner said he cannot separate the bigger mass with womb and ovary, so he suggested CA125 and gynae review. My CA125 turns out to be normal. I read the NICE guidance, and found only suggested ovarian cancer by CA125, ultrasound scan and clinical status can be offered a CT scan, and MRI cannot be used to access. No reason given. I am going to meet gynae consultant next week. I am afraid they do not provide more tests as I do not have obvious symptoms(actually only advanced ovarian cancer causes obvious symptoms). Can I ask to have more tests to identify what exactly the mass is? And if they refused, what shall I do? I don't want to live with anxiety and uncertainty...

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33 Replies

  • I'm afraid I don't know whether you can get more tests to clarify the situation, but you can certainly ask!

    I hope you manage to get more information from your GP, and can only suggest that if you don't get a satisfactory answer, keep asking. It might help to keep a symptom diary, even if your symptoms (if any) are very mild. That way you won't forget you had them when speaking to your doctor.

    By the way it's not entirely true that only advanced cases of ovarian cancer cause obvious symptoms. My cancer was only stage 1a, thank goodness, but I had a large palpable mass, was having lots of digestive problems including feeling full incredibly quickly, and was also suffering from urinary urgency and frequency and constipation. I was just fortunate enough to have a type of ovarian cancer (mucinous) that grows large in situ before it starts invading outside the ovary.

    Hope you get the answers you are seeking soon.


  • Hi there .. the CA125 test isn't reliable. Between 10 and 20% of women don't have a CA125 score outside of the normal range even those who have advanced disease.

    You have had a diagnosis of fibroids. Calling fibroids a mass means doesn't mean you have cancer. It means you have a non-cancerous growth. There are now some less invasive procedures for sorting fibroids out than there were. They tend to shrivel up in post-menopausal women anyway,

    If doctors suspected your fibroid mass was cancerous, I think you would be referred for further investigations immediately. The radiologist did refer you back to your gynaecologist so you'll know more soon. I think you'll just get another appointment to check the growth of fibroids which is normal procedure.

    I can see why you are concerned though having had fibroids and a 17lb cystadenoma (not at the same time) in the past.

    My fibroids were monitored by ultrasound on a regular basis, but this type of procedure doesn't always pick up posterior fibroid growths. I was hoping for children at the time which is why I was being treated conservatively but, in the end, I had to have a hysterectomy because they were very big and pushing on other structures and I was having a lot of pain with heavy bleeding.

    My cystadenoma grew rapidly which is what they do sometimes. I wasn't referred for tests at first which left me distraught if I'm honest.

    No matter how distraught I was though, it all pales into insignificance when I think about how I was at this diagnosis.

    You are very unlikely to have Ovarian cancer. A GP, on average, only sees a case once every five years.

    My advice would be to see your GP again and be very open about your fears. Even if you are re-referred under the two week rule though, I don't think, on balance, you'll get a CT or MRI. I would be very surprised if you do.

    It's a good thing that cancer isn't suspected, isn't it? If you really want a CT, (to stop you going insane with anxiety), I think you might have to go private and pay. That's my honest opinion. Xx

  • Thanks for your information. My 'mass' is in the posterior position, as you said, difficult to know its nature by ultrasound scan. I can't imagine to have hysterectomy as I am only 30, just got married last Christmas and haven't had any child yet...

  • Hi again ..There are ways of shrivelling the fibroids by injecting the blood source. It's a much less invasive procedure now I hear. Xx

  • Hi, the other ladies have told you what I was going to say, ie,

    1) not every case of Ovarian Cancer causes a rise in CA125,

    2) you've been told that it's fibroids.

    3l you've been told to see your gynae again.

    In the hospital where I worked if the radiologist was suspicious of something he would organise further tests himself and let the referring doctor know what he was doing and why.

    Please don't jump ahead of yourself. See your gynae, ask questions fibroids can be treated if they are causing you problems.

    Good luck. Ann x

  • I hope the procedure in hospital could be faster. In the GP referral procedure it is slow. I wait one week to do test- another week for test result-inconclusive, make appointment for another test-another week...Even my GP give me an urgent referral to gynae, the earliest available appointment was in six weeks...I don't want to jump ahead myself, but I can't help thinking and searching related reports/research/stories...

  • The real test will be a PET-CT scan as CT scans can miss very small tumours ! Ask for it and if you are really determined to find out and can afford it offer to pay for it ( costs £ 1400 ) . The oncologist may be persuaded !

  • Hello Angellotus,

    I was given a trans vaginal ultra sound scan as my periods were different ie very heavy then light then missed periods. I know I have a fibroid as it was picked up 2 years ago.

    The ultra sound showed not only my excisting fibroid but also a complex mass in my abdomen either in ovary or on the out side of my uterus. As you my CA125 was normal at 16. My 2 week wait gynae consultant said its probably another fibroid but as its unclear she has requested an MRI. I was told a CT would just confirm it was there where as an MRI would show what the mass is made of. I have my MRI tomorrow.

    My point is despite NICE guidelines referring as to when a CT or MRI can be arranged, its really down to the consultant and YOU. Its your body and you are the one worrying about cancer.

    If my MRI confirms its" just a fibroid" I plan to ask for a biopsy just to confirm it is something harmless. The ladies stories here show that its only a biopsy or having it removed and tested in the labs will give a definitive answer.

    I would suggest listen to what the consultant has to say when she see's you. If you are not convinced then ask for further test or biopsy. Try and sound calm and rational when you ask for further tests. I know its difficult when you are frightened, but if you can explain how worried you are and that a further test will put your mind at rest the consultant may be willing to do further tests.

    You may be reassured when you see the gynae consultant, they do this day in day out. They are very experienced and compassionate people choosing to work in this field so know you are frightened.

    I called my local Nuffield to find out how much a MRI would cost in case I was not offered one. It was £600 ish. Depending on what part of the body they scan. But the consultant ordered one anyway.

    Good luck with your appointment and please let us know how you get on. I know what you are going through as I am on the same path as you. Take somebody with you if you can as its difficult to remember everything that is said.

  • Your gynae consultant is quite nice. Can I ask the size of your mass? Does it have to be large enough to be treated seriously?

  • I think you'll find the gynae doc will want a CT scan. Sounds as though you have nothing to worry about (I know that's hard) but I would expect them to want to make sure and to see what is going on. Let us knwo if you are given one..

  • Thanks for all replies. You provide quite useful and valuable tips and comfort me a lot. I am a oversea student, studying in UK alone. My family is not in UK. Your replies are so warm.

    I've been in UK for several years but this is the first time I've been referred to consultant. I've asked my GP what would happen. She said consultant may arrange more tests, or do nothing but only monitor the process. I don't want the latter one. My mum had breast cancer four years ago, but after operation she recovers quite well because she discovered the mass early. Therefore I want to know how to persuade consultant to give me more tests and identify what exactly the mass is. I'm not a native English speaker. These days I am overwhelmed by these unfamiliar medical terms. Hope I can persuade the consultant to find out what the mass is.

  • hi Angellotus,

    To answer your question my mass is approx. 6cm but because the ultra sound is not clear it may be bigger or smaller. I don't think the size relates to whether its cancer or fibroid. Its what its made of that matters.

    Also let the out patient department know ahead of your appointment that you would like a translator there with you to ensure you understand everything you are being told. The NHS usually has a member of staff that speak you native language no matter what language it is. They can also use what's called " Language Line" if they can not find a staff member. I have used it; they will have somebody on the phone who is usually a language tutor who can listen to the consultant then tell you exactly what they are saying and explain you worries and any questions. It is important you give the out-patient department or consultant secretary plenty of notice so this can be arranged in time. If a friend you trust speaks your native language and English is available that's even better. I know something so personal and private is not always appropriate for a friend to hear, hence the interpretor option .

    It must be very lonely to go through this worrying time if you have no family members with you. Maybe the lovely ladies on this site can support you instead. They are very wise and very kind.

    Fingers crossed you have a good outcome and all you worries can be answered. Remember the consultant also needs to know what your mass is made of to make a decision on what to do about it. you will be in good hands.

    best wishes

  • Thanks very much for your info. Mine is 3 cm. What I am worried is the consultant would just ignore it as it is not large and I do not have obvious symptoms. Hope I can have a responsible consultant.

  • Hi

    I wonder if you contacted the OVA care nurses on this site they may be able to give you information you need? They are very experienced and probably know more than your GP about what to expect at your appointment.

    very best wishes

  • No. I've no idea about OVA care nurses. I got message about help line from a charity...How can I contact them?

    And by the way, how long have you waited for your MRI after your meeting with gynae consultant?

  • I had my MRI yesterday, 3 weeks after seeing Gynae consultant. It would have been within 2 weeks but I was away during week two.

    The radiologist would not give any clues away, I had asked if he could given me any information. He said because it was marked as urgent it would be reported on with in 5 working days and sent to Gynae consultant. As to when I will get to see her and get results who knows? The clinic is a busy one so I will just have to wait AGAIN while others know whats going in my body before I do. I find that bit hard, that I feel left in the dark while I am being discussed. I know its in my best interest but I am a proactive person and just want to get on with it.

    I have been trolling through the blogs on here looking for he OVA care nurses tel number but cant find it now I want it ! Maybe if you post a question asking for the number somebody on this site will give it to you.

    I hope you get to be seen soon and have all your questions answered.

    very best wishes

  • 02072996650 is the number I got in the message. From this web it seems only biopsy could determine whether it is cancer or not. So we have to prepare for different uncertain information during the long waiting time before biopsy. I feel the same way as you, but I know no one could give us definite answer so far.

  • Hi,

    just found the contact number 0845 371 0554. The web page you posted was interesting but I think its is American by the wording. The US do things differently due to the health system over there and the use of health insurance. So the process may be different in the UK?

    take care

  • I mean no matter what the insurance or clinic procedure is, the medical way to identify cancer is the same. From what I learnt so far, from the experience of the patients in this forum and the reports/papers, only biopsy could determine whether it is cancer. MRI/PET CT/CT could only be used as tools to increase/decrease suspicion. They cannot 100% deny or admit it.

  • you are absolutely right. That's why I will be asking for a biopsy at least if none is offered. I am still hopeful even if she is convinced its only a fibroid my ultimate aim is a hysterectomy with all the trappings ie ovary, fallopian tube etc. I will only find peace if I have eradicated all those organs that may in the future cause Ovarian Cancer. I have already delt with breast cancer so I am all for prevention rather than cure.

    I have completed my family but I understand you are much younger than me and as yet have no children? All the more reason for you to have the reassurance that your cyst is just a cyst.

    im keeping everything crossed for you.

  • Hysterectomy is too aggressive as I think every organ has its reason/role to be there.... But it will make things really simple.

    I am 30, got married last December, in my final year of PhD study, very stressful. I am the only child of my parents, so does my husband. Any decision would be too hard to make. So far only my husband knows what happens. We're afraid that our parents may not be able to bear the bad news.

  • I can hear the fear in your words but remember you don't have any bad news as yet to tell your parents. You probably will just have a simple cyst that may not even need any treatment. A hysterectomy is a very remote and unnecessary option for you to be thinking about. A lot of ladies on this site that have had surgery ONLY because they have had a Ovarian Cancer diagnosis.

    We are reading the very rare cases here, although when they are grouped together on one site it sounds so common but that's the nature of a site such as this.

    Both you and I are seeking advice and support from these wonderful women because they have been through the agony of the waiting. What we are not fully aware of are the countless ladies who have been on this site who have a mass but then after being assessed have NOT been diagnosed with cancer and can leave this site with relief ( and a little guilt) being safe and get on with their lives.

    Do you have your appointment date? I have gained very good advice from these ladies that the best way to cope with the "not knowing" is to try and fill your days with little treats, keeping busy and enjoying the beautiful September sunshine. The here and now.

    Do try and speak to the Ova Nurses, I am on the same journey as you and am not able to reassure you as its all new to me, but they are very knowledgeable and will be able to give both you and your husband the information you need.

    Take care and good luck

  • You're right. But I find it difficult to concentrate on my work. My appointment time is this Wed.

  • I will, and I am sure others will be sending lots of positive thoughts to you. I shall be thinking of you on Wednesday. Please let us know how the appointment goes.

  • You know what? These days I am thinking to go back to my country for examination and treatment, as the cost is cheaper than UK private hospital and I can get the result(blood test/MRI/CT...) the same day or the next day. I plan to get the suggestion from gynae consultant first, and if he/she arrange something needs long time waiting, I will do it. I have suffered enough to wait.

  • Great idea. Where I home?

  • China. I am writing to my supervisors to ask for a leave. Not sure if it is OK as now is the busiest time during my research.

  • Lets hope they support your request. I would say do what ever it takes to ease your mind and speed up this awful waiting.

    Good luck

  • Do tell us what your MRI find and how could MRI be better than Ultrasound scan. If possible you can ask for a copy of report. My GP did not give me anything until I asked.

  • I hope to get the result within 2 weeks. I may do as you suggest and ask my GP for the report and to explain it to me (if he gets it before my appointment.)

  • Hi all,

    I've just come back from gynae review. She told me she thought it was a fibroid and unless it caused some symptoms, she would do nothing. She kept telling me how common fibroid is. I asked is it possible to attach to ovary, she didn't answer directly. She gave me internal examination and said she cannot feel it coz 3cm is too small. When I asked how big is big, she said maybe 10cm. When I asked when should I have next ultrasound scan to monitor the fibroid's development, she said it's quite natural for fibroid getting bigger due to hormone, so I can have the next scan after a few years... She said in UK, I won't get any more treatment for the mass.

    I feel a little bit relaxed but still worried as no evidence given for the mass to be truly a fibroid. Both ultrasound doctors suspected it is a fibroid but it also has some characteristics that they are not sure, like poor delineation, possible blood support, uneven echo... But the clinical doctors' decisions are based on the 'fibroid' part but ignore the 'suspect' part of the ultrasound scan reports. I really do not want to worry too much, but I do have a friend who has cysts for which doctor said '98% of such cysts are benign ones' but they turned out to be the 2% cancerous ones during surgery, and were too late to be treated. She passed away after less than 2 years. The possibilities for doctors are just statistical numbers, for patients it is life and hope. Therefore I will go to my country to do more imaging tests to see the exact position of the mass and evaluate its nature. If everything is OK, I will buy commercial medical insurance to make sure I don't have to wait too long in the future.

    Thanks for all the information and support given by your lovely ladies. I'll pray for you to have good health and happy life, and will update new test result and any knowledge/information I have to help.

  • Hi Angellotus,

    I am so pleased to hear your fibroid result. That must give you some reassurance but I also understand that little bit of worry that is still left behind. Did you mention your poor friends cancer diagnosis to the consultant?

    I think your plan to return to China to have tests to give you confidence is a good one for you. I hope all goes well and you can get on with your life.

    I look forward to hearing the outcome.

    best wishes

  • Hi hannah, I almost had no chance to ask questions as the doctor kept asking me questions like any heavy/irregular bleeding? persistent pain? ...As I said, I don't have serious symptoms. So all the answers are no. She felt quite satisfactory. When I asked if it's possible to be a tumor on ovary as the ultrasound doctor cannot separate the mass from other organs, she didn't answer directly but turned to talk something else. She gave me the impression that only serious and urgent symptoms need serious treatment in NHS, and she had no interests to get more evidence about the nature of the mass. From your example, even I can get MRI test, I have to wait another several weeks. I don't want to wait anymore. So I gave up and booked my flight directly.

    I'll keep you updated. Hope you can get your result soon.

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