Hi everyone, I'm new here. I guess I'm here because it is hard to talk to my significant other since he is just as scared as I am, and being realistic seems hard for him. He's so focused on being positive, but I need to be blunt and acknowledging what might be happening is the only way to cope in my mind.
I'm young (30), but cancer does run in my family. Additionally, I got my period at 8 years old which I know increases my risk. I was in the hospital about two months ago due to lower left quadrant abdominal pain. They diagnosed me with a burst complex cyst (after seeing it on an ultrasound with some free fluid), and sent me home. They told me I'd feel better in about a week. Two months later and I'm still in horrible pain, so I was send for an ultrasound specifically on the 3rd day of my period so that no functional cysts should be visible.
Results: Solid mass that is not hemorrhagic or a cyst. Solid mass is isoechoic (not fluid) and blood flow is present. I was tested for CA125 which came back within normal range. I know that this is a good sign, but I also know that it can be within normal range in early stage OC, My doctor referred me (rather urgently, I feel) to a gyno oncologist. I have an appointment on Monday.
You ladies seem so supportive of each other, while not sugar coating anything. What ultrasound features were present when you were diagnosed? How were your CA125 levels? I know that obsessing over this during the merciless wait may not be helpful for some, but knowledge is power - as is unity. Additionally, I'm in nursing school (halfway through my bachelor's degree), so feel free to be as technical as you want with your language. Or not All responses are appreciated, as I'm feeling somewhat isolated right now.
Thanks everyone.
Morgan Xx
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LittleMissNash
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So sorry you find yourself here... and you are so right about the waiting, it sucks! My ca125 was 600ish and a mass was detected but we are all so different that comparison is often less than helpful. Best of luck xx
Waiting is the worst as our minds naturally go into over drive and you sound a bit like me in that you want to know what you’re dealing with. So hard to speak frankly to our loved ones.
It’s good your drs given you an urgent referral for Monday. As Lyndy says we are all so different and present in different ways it’s hard to make comparisons.
I had no pain but got ascites over a few days whilst on holiday, had an emergency laparoscopy and they found the OC later diagnosed stage 4 in June 2016. My CA125 was 3880 ! I’m now coming up for 3 years since diagnosis and fit, well and enjoying life.
What I want to say is whatever happens and I hope and pray it’s not OC you can get through this. Try and take one step at a time, your young which means you will cope well with any treatment needed and recover quicker than us oldies ( I’m 56)
If you want to discuss your situation or get a second opinion about any treatment options Anna on the Ovacome helpline is brilliant. ( open weekdays )
If you want to find out more info in the meantime and I hope not needed then Ovacome and Ovarian Cancer Action have good info hubs. There is also a guide for younger women.
Try and keep busy over the weekend and I hope your pain is being managed.
I am really sorry that you are in this predicament at such a young age....hugs xx
The fact that your CA125 is in the normal range is really really good news. I’m not sure what the negative predictive value of CA125 results is in OVCA , which as you know is the percentage of people with a negative result who truly do not have the disease is , but I would expect it to be very high. Most people with normal CA125 don’t have the disease , but of course a negative CA125 does rule it out completely.
Your appointment is very soon , you wouldn’t be normal if you weren’t worried at this time , but three days will go by very quickly. So try to get through these days whatever way is best for you....try to get as much time as you can outdoors , being active and being with other people. This time will pass and hopefully on Monday you will be reassured that all is Ok.
I was only diagnosed in August of 2017, but before that I knew nothing- zero- about Ovarian Cancer. Since that time, I have researched, read up on everything and dived into this forum, which has helped me considerably.
For instance, even after researching Ovarian cancer in the first months of my treatment, no one ever told me about the BRCA mutations. I only heard about it here!
I am Jewish and that should have been the first question out of my Oncologist’s mouth, “are you Jewish or of Eastern European ancestry? You are, well you should have this test!”
But no, I had to plead to be tested and even so, it was 6 months later before I was offered the test.
By then, one of my sisters had a recurrence of Breast Cancer. As she now lives in Los Angeles, she was tested within the first month of diagnosis. She had the BRCA1 mutation. I did not wait for the genetic test here.
Instead, my entire extended family got tested when I visited the UD after finishing first line treatment. Only myself and my daughter tested positive for BRCA1, but it made a big difference in my treatment and we could take steps to insure my daughter never gets thus disease.
Although they are rotten in giving the genetics test, the NHS is brilliant with offering risk reduction surgery ASAP.
Meanwhile, just so you know, most of us had CT scans followed by a biopsy to determine our diagnosis.
CT scans are usually the best way to look at this cancer.
As far as my diagnosis. I felt absolutely fine, just a little more tired than usual, until one day I didn’t feel so well, got diarrhoea that kept me home for a week, didn’t want to eat, became so weak I could hardly make it up the stairs to the loo, my belly swelled up and I had a fever, all with in 8 days, when my husband panicked and called an ambulance. Thank goodness for that.
The ER doctor saw me immediately and recognised my symptoms right away.
A CT scan confirmed it.
But 8 days before that I felt as fit as a fiddle.
I know the CA-125, is not always a good indicator, but mine was over 2000 at diagnosis and 4000 when I started treatments. Now it is 15.
It sounds to me like you are in the right track. I hope they get you that CT scan right away.
And then you can go from there.
I wish you all the luck in the world and hope they can deal with your discomfort now!
Best wishes,
Laura
Hi Morgan.
You are far too young to find yourself here! CA 125 has always been an uncertain indicator for me highest ever 79
Slightly swollen groin lymph node prompted ultrasound and biopsy, only signs of any problems, felt fine other than that.
Its hard not to feel isolated even if you are surrounded by others as everyone's experience is different.
My ultrasound showed bilateral complex cysts- one was 10 cm. There was also some ascites athough I was not bloated.My ca 125 was 67 although was normal when first tested. My symptoms were nausea and very slight but persistent diarrhoea. Eventually I couldn't eat. I was diagnosed stage 3c clear cell. The waiting is awful but at least you are being taken seriously. Fingers crossed that it turns out to be ok.
Morgan,
It is really good news your CA125 is normal. I pray for you that the mass is a benign cyst. Try concentrating on doing things this weekend to keep your mind off of it. I encourage you to not search the internet as it only creates so much worry and you may have nothing to worry about. Monday will be here very soon and the Gynecologic oncologist will be able to tell you. Thus site is a wealth of knowledge if you should need it.
My symptoms were ascites and high CA125, over 1000 when tested.
Hi. I wrote a long reply and it vanished. The upshot was that I had a complex separated cyst with a solid section. My CA 125 was 8. I am stage 3 b high grade serous. Your youth is on your side even if you do have the dread OC. Also as Laura said you should get genetic testing ASAP because of your age and your family history. Plus there are rarer types of OC that can be more treatable and are more common in young women, like borderline and mucinous, etc. I wish you all the best. Please keep us posted. Also the rush to get you to a gyn onc is very good.
It is always the waiting to find out that is the worst, I’d like to offer some way to help your anxiety but it is hard. I can only suggest distraction, do anything that absorbs your mind for long periods of time.
Whatever the diagnosis it can be coped with.
I was diagnosed at iiic with miliary disease remaining after surgery, i.e. incurable, but I’m still enjoying life 2 years on and planning trips away for next year! I am twice your age and I am sure you stand a good chance of not being such high grade, and a good chance of keeping your uterus.
It isn’t always helpful to have everyone around you trying to jolly you along and being positive, try to find a LITTLE bit of time on your own to weep or scream! Then put your brave face back on. Check out some of the profiles of people on here to get a true picture of what OC is really like - but do remember that many who have had surgery and no recurrence will never post on here! Most people here are older than you and have higher stage OC so check out those with low grade, you may very well be in that category and not have problems after initial surgery/chemo.
You’re life is not coming to an end and although it’s no good looking through rose-coloured glasses do keep planning for your future - which you have a lot of.
Your CA125 is in normal range, it could be a benign cyst / mass. Mine was 800+ when first diagnosed. Ultrasound showed 2 large cysts 8cm and 12 cm. symptoms started about two months before diagnosis: bloating, brown discharge, and discomfort but no pain at all.
Waiting for appointments & test results is always nerve wracking. Try not to get too hung up on ca125 results. Although for many ladies with oc they are useful, for some of us they are not helpful. I currently have oc, but my ca125 is still only 13. Your scan result is likely to be a better guide. Di
I recently started reading this forum from a similar position to you - I was waiting between referrals and I wanted to know more to feel reassured. What I have found is that there aren't many places to look to find examples and anecdotes from all the people with benign cysts and tumours - they are a silent majority!
My discomfort/pain was misdiagnosed for many months as a symptom of urinary infections, bowel problems, etc. After a clear blood test I finally got referred for an ultrasound which found a complex cystic mass, which was predominantly cystic but with solid elements and blood flow, 14x11cm so quite big. My GP called me in the same day to explain fast track referral and take bloods to check CA125 and also for tumour markers (though they told me it was hormones, maybe a slight white lie).
In my first gynecologist appointment I was expecting answers after waiting so long but because the blood tests hadn't told them anything (CA125 was 31) they just wanted information from me. The multi-disciplinary team decided I should have a CT scan, and following that the team then referred me to the hospital that would operate. I first saw them a few days ago and the belief is that I just have a massive dermoid cyst, but they can't officially diagnose it until it's out, and the surgery is scheduled for June 20th, so we're getting there!
Given your tumour is appearing as solid yours is probably something different to mine, but there are benign options in all categories. As others have said, a high CA125 is generally a bad sign (although endometriosis can raise it, I have learned from on here) while a normal one doesn't say much, and if you're young as we are (I'm 28) then it's not a reliable indicator - the fluctuations are more useful though.
The waiting is horrible but gradually you will get more information and whatever exactly it is will be treated. If you don't have OC then being fast tracked is a bonus, and if you do then age is on your side, plus there is so much informative support on here.
Best of luck to you and hope whatever treatment you need doesn't interfere too much with your studies - nurses are marvellous and you're going to have firsthand experience of what a difference you'll be able to make to patients on the other side of this!
Thank you so much to each and every one of you for replying. Your support and words of wisdom are such a comfort. You are all so strong and I have been seeping up your strength all weekend. I did my best to just enjoy the weekend, spending time with my significant other and my son. I was battling some awful nausea, it felt like I had food poisoning but nothing was coming out either end. That and the extreme fatigue. I have my oncologist appointment this afternoon, and will keep you all updated if I have any news. Once again, thank you all for your thoughts and candid responses.
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All responses are appreciated, as I'm feeling somewhat isolated right now. 
Waiting for surgery
Waiting and more waiting. 
Waiting a diagnosis 😞
Waiting for scans
The waiting is the worst
