How long to see a consultant for suspected ovarian cancer in the west of Scotland?

Please anyone with any information or experience please help. My wife had an ultrasound showing a complex cyst with blood flow and abnormal shape. She also had a CA125 test showing 63. These things combined plus symptoms the GP said merits urgent referral. The GP told us the urgent referral would be within 2 to 4 weeks. We are in now the third week and we phoned the appointments department to get an idea when the referral is coming. Two separate handlers on the line told both of us that urgent referrals are not being seen until 16 weeks or more. Is this true, or a misunderstanding somewhere? Are people with suspected ovarian cancer really waiting 16 weeks or more before they even get an appointment? Please tell me this isn’t true or what anyone else has experienced? Any information from anyone who knows how this works would really be appreciated. 

  • Hello! 
    I am a lucky person who has a complex cyst. Firstly I want to let you know that a raised CA125 test can be indicative of many many things, it tends to be in the hundreds or even thousands when you are on your period so don’t be too alarmed, that does not give you a full picture of anything. How old is your wife? Is she pre or post menopause? does she have other symptoms like pain, bleeding etc? 
    if someone has already determined that is it a cyst then it’s unlikely she will be on the 2week wait for suspected cancer, as 9/10 cysts are benign. If it was an undiagnosed mass then it might speed it up. Yes a routine appointment at a gynae can take months and months so it sounds much more like they have looked at info and downgraded the urgency for her appointment. perhaps to settle your mind she could go back to the GP or call the gynae and ask the reasons they have downgraded the urgency.

    i have a cyst, they are almost certain it’s benign, I found out in October, I had another MRI in December to look at it properly, I had an appointment with the gynae to discuss in march and I have surgery booked for July. Mine is a dermoid cyst. Quite a few of us on here have them. Just to give you an idea of timeline. The fact they are not seeing you very urgently should offer you some comfort, however if your wife has other symptoms then be your own biggest advocate and chase it up. 

    good luck 

  • Thank you so much for taking the time to reply. We have been told emphatically by the appointments department that we are being treated as an urgent referral and that urgent referrals in Great Glasgow and Clyde simply take up to 18 weeks to be seen. I asked how long does a routine referral take and they said a year. I can’t believe it but they told us the both the same thing twice on consecutive days. What can we do? The guidelines state that elevated CA125 and/or abnormal cycst merit urgent referral and the GP has given us this but it just takes months according to the appointments team. My wife does have other symptoms. She has lost weight, is tired all the time, has bloating, we are really worried and it feels like being left without care. She is only 45 so that is one thing. Thanks for your reply. 

  • Hi I'm afraid the figures are correct in my experience. I've just had an appointment through from Glasgow and Clyde and it will have been 19 weeks for my urgent referral. It is very distressing that so many women are in this position. You could phone the secretary and say you'd be happy with a cancellation at short notice, or research private options if that's doable. Try your msp but there are so many of us in this position sadly.

    Good luck with it all.

  • Can you go private? I looked into a private gynae but then got an nhs appointment through a week later so cancelled it. Just to settle your worries. 
    Although it’s so very busy I do think that the gynae team will still be seeing the most suspected cases first, hence the wait. Hopefully it comes through sooner but there are private clinics if you have that option. 

  • Thanks for your reply. I am simply in disbelief that this is the level of service. People are going to die on these waits. I asked about the so-called guarantee of being treated within 62 days for cancer and the person on the phone reacted as if that’s ridiculous. Thanks for the idea about asking for a cancellation. I am at my wits end. Maybe we could spend everything to get private care. I really didn’t expect the NHS to be this bad. This is not just a bit slower it is so outside any reasonable timeframe it’s unbelievable. The target for routine appointments is supposed to be 12 weeks. So urgent referrals are not even being seen in the timeframe of routine appointments. The person in appointments said routine appointments are taking a year. I wonder is Greater Glasgow and Clyde unique in this position. My wife is from Austria and moved here 25 years ago. In Austria she would be treated within a couple of weeks. She is cursing the day she came here. 

  •    Hi new to this forum but also in the same position as your wife and wondered if there had been  updates on timings for referrals?

    I've had my blood results back ca125 is over 500 and a chest xray done on same day as bloods.  I've had the ultrasound appt come through in a week (my GP also referred urgently) but now worried about both results of that and potential referral times. 

  • Hi, sorry to hear you’re in the same situation. We decided we couldn’t wait. I took my wife to Vienna, her home city, and she had the cyst removed by her longstanding gynaecologist in a private hospital. It turned out the cyst was benign but we couldn’t risk waiting to find out. The operation cost £8000 out of pocket. When we returned to Scotland there was an appointment letter waiting for Thursday 7th of August. That was 9 weeks after an urgent referral from the GP. We kept the appointment and the doctor said we did the right thing in going ahead with the operation in Austria, in the circumstances, and she said the wait times in Scotland are far too long. Nine weeks was actually better than the initial appointments team estimate of 14 to 18 weeks. I complained to the head of medical services over a month ago. This perhaps resulted in the appointment coming after 9 weeks instead of 14 to 18, but we didn’t know it wouldn’t be 18 weeks, and 9 weeks is still far too long. So if you complain you may have some improvement in wait time. I can share my letter with you if you wish to adapt it for yourself. Depending on how concerned you are and your resources you may consider paying for private assessment and treatment, but this can be expensive. Ours was only £8000 because in the end it was benign. Others have reported in the press paying £20,000 or up to £40,000 in London clinics. You have perhaps seen the media reports of women in the west of Scotland who felt they had no other option. Sorry our health service is like this. It’s a real disappointment and a worry. 
    I wish you all the best
  • Offline in reply to donrayjay

    Thank you so much for taking the time to reply.  I am genuinely so pleased and relieved for you both in that your wife's condition was benign.  But awful that you had to go private due to the wait times. 

    I suspect my situation will require follow on treatment but I'll wait for the initial results of the ultrasound this week and the follow up conversation with the GP.  I'll take it from there - one step a time!  Wishing you both good health, Neve