Last week I found out my ca125 was 804. Yesterday, I had an Ultrasound & they told me I had a 10 cm cyst. I've gone into panic mode, and am thinking the worse. I'm thinking that things have been left too late. They wouldnt tell me anything else, just that the Radiographer would look at things, & the results would be sent to my GP in 4 working days. I've had pains for years, but thought they were normal period pains. I only went to the Dr at the beginning of the year cause I had constipation. I'm so worried that things have gone wrong & it's too late. I'm only 36.
Love Emma
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EJ0203
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Try not to worry too much....easier said than done, I know. It's unlikely you've left it too late. I was three years going back and forth to the GP. Have a look on the Ovacome website, ovacome.org.uk There are lots of fact sheets under the Resources heading. There's also a helpline where you can ring a nurse (Mon - Fri) and get advice and reassurance. Of course, it may not be OC, which I guess is what you're fearing. There are other things that can cause a rise in CA125 markers. Try to fill the time between now and your next GP visit, but don't be tempted to google too much, there's a lot of misinformation and out of date statistics on there. Even if it is OC, it's not as bad as this bit, when you're waiting and frightened and don't know what's going to happen. There are lots and lots of success stories on here from women with different stages of diagnosis and treatment.
This is encouraging Wendy .. Do you mean success as in cure for Stage III and IV. I hadn't thought of my own illness in those terms but maybe I should hope for that. As someone sort of said on here recently, I consider it my duty to stay alive because I know that new treatments are going to be out there soon and I want to be in a good enough position to get on the relevant trial. You've been an incredible support to me Xx
Yes, Tina, you're definitely a success in my eyes, living with the illness, not being dominated by it, working to raise awareness and improve treatment, helping others.......and we never know, there may be new form of chemo or gene therapy or hormone treatment around the corner....so hang on in there
I read an article a couple of days ago that doctors were now allowed to try new, untested treatments that were anecdotally showing promising results, when other treatments have been tried. This would be a great step forward in my view.
Love W xx
Hi Emma .. Many cysts are benign and the marker is just an indicator of inflammation. It's easy for me to say, I know that. Meanwhile, it's an hello from me to you. Love T xx
I completely understand how you are feeling. You need an urgent referral to a gynae/oncologist. Bear in mind your high blood results do not necessarily mean you have cancer, as other things can give a high reading. Cysts on the ovaries are very common and are often benign, especially in younger women. The important thing though is to get seen by a consultant ASAP. Lots of love Kat xx
Please dont panic. Last March I was told I had a 15 cm cyst on my ovary and it was grade 3 stage 1b which means that although it was quite aggressive it had not spread. I also had been told for 6 months by my Doctor to drink more water and that it was possibly a kidney stone that was giving me all the pain.
Here I am 1 year later having had my op and 6 cycles of chemo waiting to go to see my oncologist for my 6 month (hopefully) all clear check up.
Although it is all very scary there are some amazing surgeons out there and my care has been amazing.(Op in St.Thomas's in London and after care at Guys)
Please stay positive and happy as this will help in your recovery.
I just wanted to say thank you for all your kind responses, & listening to me!. I think that you are all truely inspirational, and you have all shown so much courage. I just hope that I can find the courage to deal with what the future holds. I'm not doing great, cause i was a mess at the ultrasound yesterday!
Hi Emma I had a 20cm cyst on my ovary last year went for a scan like u then they sent the the results to my gp a few days later after my scan I got a call from my doctors for me to come in ASAP as it was a complex cyst I was 38 with a young baby got my appointment in under 2 weeks to see a gyno/ oncologist the rule is u have to be seen in 2 weeks timeframe had op to remove it and 1 ovary it came back borderline ovarain tumour no treatment needed just advice to have full hysterectomy or scans every 3 months I chose scans cause got support at home only my partner and had only just healed from my op so stay calm the doctor will call u ASAP if looks complex but it don't mean it's cancer mine was the size of a basketball and I'm very slim good luck keep us posted x
Thank you for sharing your story with me, because I had a complete meltdown this morning. I'm so scared about the results, i just keep focusing on my high ca125. In the last 8 months i had to go to A&E cause of the stomach cramps I had. The first time they said it was due to low blood pressure & the second time they thought it was IBS. I keep going over stuff, & wonder what must have been going on to cause so much pain! I'm so worried about what the scan will show.
I'm so pleased turned out well for you, & i wish you well for the future.
Love Emma x
Hi Emma
Try not to prejudge it all and PLEASE stay away from Dr Google, who will only worry you with lots of info irrelevant to your specific state. You do not know what that is yet. It's very hard at this investigation stage, and you need lots of TLC. But it isn't a long stage, just feels like it. On here you have now got loads of fingers crossed for you. And we will be here whatever the result.
If your fears are confirmed then focus first on practicalities: whatever the result there will be a clear treatment path, and it will move really fast if anything nasty is confirmed, so don't worry.
I was diagnosed stage 3c mid 2012, and in remission with no evidence of disease since the end of my treatment at the start of last year.
Thank you for response. It's fantastic that you have made a fantastic recovery and are in remission. The support that I have had from all the ladies I've spoken with has been amazing. I go from being a rational thinker, to thinking the complete worse. I hate the not knowing, but I'm scared of the knowing too! I'm trying to keep busy! Its very emotional x
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