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CA125 at 399 marker

RueB
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Hi hope your all well and thank you for sharing your most intimate experiences and scares. I too have questions i wish someone would answer honestly but more importantly as quickly as humanly possible as waiting for answers is making me more sick as all I'm doing is self diagnosing myself using Google as my reference point. I have so many cancer like symptoms and I'm being tested for ovarian cancer. My CA125 blood test shows me at 399 and I'm on fast track referral. I have seen my Gynaecologist had a ultrasound scan and now waiting on an MRI scan as my ultrasound was not clear other than my fibroids have significantly grown since they were last checked years ago. Albeit they are not the biggest I've heard of they are certainly causing me a lot a pain and discomfort. My symptoms from September this year to now have worsened and I've ended up in hospital 3 times in the last few weeks as I simply cannot control the pain in my pelvis. I'm worried gynaecologist won't actually do anything as my next appointment is next week and I have a horrible feeling I'm going to be dismissed. Not expecting any answers from all you lovely peeps just needed to vent per se. Thank you for reading 

  • Hello RueB

    I'm really sorry to hear that you're struggling with some ongoing health problems at the moment and that you're feeling so anxious ahead of your appointment with the gynaecologist next week. 

    We know that waiting for information and a diagnosis can be a difficult time and many people turn to the internet for answers during these periods. Unfortunately what happens most often is that they are left feeling even more anxious and still with no firm answers. If you can avoid using Google to look for answers then hopefully it will help to decrease your anxiety levels. 

    We know that some people find it helpful to talk things through and I wonder if you might find it helpful to chat with one of our nurses ahead of your appointment next week. I'm sure they will be happy to offer any advice and support they can. If you'd like to talk with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    I hope the specialist is able to give you some reassurance when you see them next week. Do let us know how you get on. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • Offline

    Hi RueB,

    How did your appointment with Gynea go? I'm also waiting for my referral appointment with CA125 marker of 398 so driving myself crazy with worry. Hope your results were positive! 

  • Offline in reply to Lampy1699

    Hello my dear I feel for you and understand what your going through the wait is truly the hardest part. I finally got myself seen by my Gynaecologist who has agreed to do an abdominal hysterectomy but as my MRI and Ultrasound showed no traces of cancer i was placed on a standard wait list. No timescales could be given as there were many ladies in front of me. I have been feeling very poorly last 4 weeks even more than before so got myself into GP. My GP wrote a letter to my consultant making them aware im getting worse and need to be seen more urgently. I requested to have my CA125 levels reassessed which were done on Tuesday and Thursday this week my GP called me to say they have gone from 399 to 1793. Now my GP has put my on fast track once again to get me into the hospital ASAP but I hadn't heard anything from the hospital about my operation after my conversation with my GP so will be chasing them. Persistence is key I called and chased anyone and everyone I could to help me. Waiting for things to happen makes everything stand still keep yourself your mind and body busy if you find yourself thinking negatively divert your attention elsewhere. Believe me my dear I know its much more difficult putting this in practice but how I see it, it is what it is and I will deal with it when I need to but for now I'm in control not my markers not cancer and not the unknown. Take care my dear and I hope all is well with you x

  • Offline in reply to Lampy1699

    Hi lovely how are you getting on? Are you ok. I'm here if you need to talk x

  • Offline in reply to RueB

    Hi RueB,

    im ok, thanks for checking in. I had to go to A&E as I had temperature and very sharp pain on the right hand side, where my cyst is. 
    was transferred to a different hospital and had a key hole surgery yesterday. When they looked inside my pelvis they were greeted with a severe endometriosis all around my pelvis, large endometrioma which they couldn't remove so they drained it and sent the wall for biopsy. I must have had another cyst that ruptured as there was blood in my pelvis already. 
    On one hand I feel much better as there is no more pressure on my back which makes me feel much better, however as it was emergency op only they couldn't take any of the other lesions out or the cyst which will most likely refill again. I was therefore referred to an endo consultant and awaiting results from the biopsy, but we are 99% sure they will come back benign. 
    So it's just a waiting game now, if my pain comes back which will mean further operations and the results of my biopsy. 
    I have referred myself to private endo specialist for better timely treatment. 
    If I didn't have that sudden onset of pain, I would have still been waiting for an appointment with gynaecologist as they didn't think my 2ww referral was needed and downgraded me to standard wait times and I would have been suffering with the pain, bloating, fatigue and more. 
    I hope this gives other women a little more hope to when they get a high CA125 results as mine was clearly due to severe endometriosis. 
     

    Have you had any updates? 

  • Offline in reply to Lampy1699

    Wow you have been a busy bee I hope you never experience that pain again. I saw a new Gynaecologist Saturday before last via my second fast track referral due to my elevated CA125 markers. This doctor was baffled why my markers had increased 6 times over from 399 to 1793 since September and thinks maybe its just an anomaly so he asked me to get my bloods done again which I got done today at the hospital. He did inform me i have Adenomyoma, Endometriosis and Fibroids and any combination of these could increase my markers. He kept repeating that he didn't think I have Cancer so I asked him ... do I have Cancer and he couldn't definitively say yes or no. Now I've had my bloods redone today I too am eagerly awaiting the results so once again time feels like it has stood still. If my markers are showing more than 1793 on this blood test there is a chance I may need to go down the Cancer route but I have zero idea what the process is. I was told on my last appointment that if this is the case then I would be under a completely different team of specialists but if it is just a fluke and my markers come down then I will stay on the list with the Gynaecologist and simply will have the wait my turn to be operated on. These conversations I feel are important to share with others as my personal experience may help others by giving them an insight into my journey thus far. I hope you have a speedy recovery from your key hole surgery and hope you get the answers you need. I will update you when I have had my results back from the bloods but until then rest up and take it super easy x

  • Offline in reply to RueB

    Hey Rue! 
    i just came across your post, how are you doing now? X

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