8cm ovarian cyst with high levels of CA125

Hi,

This is my first post here, although I have been getting some comfort from reading other's stories and hoping my one is just as positive. 
 

I have had several scans over the last 6 months to monitor my ovarian cyst. My last scan was 5 days ago, on Saturday, and I could tell the sonographer saw something not good as he seemed quite concerned and told me I have a large ovarian cyst, that has just slightly grew from the last scan and this could be endometrioma. On Monday I received a call from GP to tell me I urgently need blood tests and have urgently referred to gynaecologist. The blood results came back within 24 hours and I received a phone call from my GP to tell me the blood tests were to measure cancer proteins in my blood and unfortunately my levels were 398, which are severely out of range. He has then told me they are suspecting cancer and I will be fast tracked to all appointments. My gynea referral is this Saturday, and I'm so scared. I'm only 35 and can't stop thinking of the worst case scenarios. 
I have been trying to find online how quickly I will have an operation after my gynea referral to investigate internally if this is cancer? I wanted to go private but the GP advised me against this as if it is cancer I will most likely be referred back to NHS due to the costs involved. Im just worried it will take weeks for them to operate and me finding out the result and starting treatment. 
 

Has anyone got any personal experience with how long they had to wait between each stage? 
 

  • Welcome to the forum Lampy although I'm sorry to hear about your cyst and that all your appointments are now being fast tracked.

    I know this must be scary but I'm glad you've been able to take some comfort from the posts you've come across so far and hopefully some of our members who have been on this journey will be along soon to share their experiences and advice.

    I really hope all goes well with your gynaecology appointment today, and that you'll be able to get some of your questions answered, but if you'd like to discuss anything that is playing on your mind after you've been, then feel free to give our team of cancer nurses a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m and they'll do all they can to help.

    We're thinking of you Lampy and will have our fingers crossed everything will be o.k.

    Kind regards,

    Steph, Cancer Chat Moderator

  • It's been a bit of a rollercoaster I have to say.

    I had 2 appointments over the weekend. The first one was with a private gynaecologist ( kept it in case NHS had long wait times ). Anyway he saw me for 5 minutes and told me there is nothing wrong with me, I clearly just have an endometriosis and need to rebook with endo specialist and sent me on my way. Didn't look at my scans, read the brief report from GP referral and told me my blood test was high because of the endometriosis. I told him my GP advised me that it may be cancer and he instantly denied that idea. I told him I also have another appointment the next day through NHS which he advised me to still attend. So I left that appointment feeling like an idiot and a hypochondriac and everything in between. Very glad it's not cancer, but felt embarrassed I was so dramatic about it ( if that makes sense)?
    Fast track to the next day where my husband drove me an hour to this appointment, dreading another consultant treating me like an idiot, but in high spirits as at this point I don't have a cancer. All I was concerned about is to get surgery done to remove the cysts as the pain is constant and really effecting my mobility ( normally active person ). So this gynea consultant was much nicer, actually took his time to explain to me why I'm struggling to walk and move and it's hurting even though I'm sitting down and that I constantly look 8 months pregnant might be all to do with my large complex 8cm cyst that is heavy ( creating pressure) and pushing on my spine and other organs. He then carries on telling me he can't operate on me as I need to be treated by MDT due to my symptoms, the high blood results and the fact there is no guarantee the cysts are definitely benign and other reasons cannot be excluded. He finished it with, I don't think you have cancer, but we have to rule it out. So he has now urgently referred me to gynea oncology. 
    You can then imagine my mind has gone back on Google thinking I have cancer and at what stage it may be....  I'm actually disappointed with myself how dramatic I can be when the C word is mentioned! All this googling is really not helping. 
    I have been told I should expect to get a phone call with an appointment date by the end of this week. 
    I'm pleased my husband went with me to see the NHS consultant because I don't think people would believe me this experience. 
    Since the weekend I have done the following, apart from googling every single word in my new referral letter:

    1. I have booked to see private endo specialist as NHS would probably take years for them to operate on me. ( I'm doing this alongside the NHS process ) 
    2. I'm reminding myself that being referred to gynea oncology is the routine process and more then 9 out of 10 that are referred to oncology don't actually have cancer. 
    3. trying to keep busy as I'm the most impatient person ever!! I haven't been able to work properly ( my job is heavily behind desk, in the car, with back to back meetings) and I just haven't got the strength and the pressure in my back is just making me miserable and not able to sleep properly. 
     

    I will update once I see the oncology consultant, if anyone wants to hear from this rambling mess! Even though I have this fear of the gynea oncology consultant looking at me and asking me why the hell have I been referred to them if I only have endometriosis. So prepared for that situation too.  
     

    Apology for the long blaaa. I really thought I would manage my reactions and emotions better in these situations, but I'm a bit of a mess and feel like a fraud ( I'm now questioning if my back is really that painful and is it not just in my head? ). There are people with cancer who need these appointments and all I want is to have these cysts taken out so that I can get on with my life. 

    Hope that helps, or at least provides some amusing bedtime reading. 

  • Hi    Sorry that your going through the system it does seem rather bumpy. I have had complex ovarian cysts that were found unexpectedly during a colonoscopy for weight loss, left sided pain, bowel problems.  The referral to gynaecology oncology was two weeks, l saw the dr and had more tests and a MRI , ultrasounds to see if the cysts were growing or shrinking. 
    The gynaecology oncology surgeon rang with the results, booking on the list for surgery. The wait for admission was about 8 weeks. I had extensive adhesions on the left side that took hours to remove making the recovery longer as open procedure. Fortunately the biopsies were benign so well worth the op for the reassurance that they have gone and can't develop into cancer, l am well over the age when my overies should be active. 
    l hope you have your date for your operation soon 

    take care 

    susie