Likely ovarian. Terrified. Anyone available for a hand hold?

[Ohjoyohbliss]

Blood test yesterday: Serum CA 125 level over 35 indicates possible cancer. Mine is 213. Shit.

DH knows and one friend but I don't want to worry anyone else until I know how bad it is; hence I've name changed for this post. I'd love to know how anyone else has coped / is coping.

CT scan Saturday and USS on Monday. GP has made 2ww gynae referral today.

Hi, I haven't got any experience but I just wanted to say that I've read your post and understand how frightened you must be feeling.

I have had skin cancer (a long time ago) and once the doctors know what they are dealing with; they work quickly and you will have a team around you.

@indecisivewoman81 Thank you.

Sending a virtual hug, I would be scared too, I hope it's nowhere near as bad you think, being in limbo and waiting for tests and results is the worst bit.
Got my fingers crossed for you x

Massive hugs
One of my close friends had ovarian cancer 2 years ago. She had surgery and chemo and is doing incredibly well.

Benign Conditions Causing Elevated CA 125:

Endometriosis: A condition where tissue similar to the lining of the uterus grows outside of it.

Fibroids: Noncancerous growths in the uterus.

Pregnancy: Particularly during the first two trimesters.
Pelvic Inflammatory Disease (PID): An infection of the reproductive organs.

Don't panic OP.

Benign Ovarian Cysts: Fluid-filled sacs on the ovary.

Menstruation: CA 125 levels can fluctuate during the menstrual cycle.

Other Conditions: Cirrhosis, pancreatitis, and other inflammatory conditions can also cause elevated CA 125.

Sorry I meant to write don't panic as well

It’s fantastic that the CT scan and ultrasound are being done so quickly. I was seen in hospital 5 days after my referral. This means that the results will be available when you see the consultant, so you’ll have an idea of next steps then.

Thank you. Obviously I've googled and read similar but Im not sure if it goes this high with benign conditions.

Yes, I was amazed how quickly the scans are happening. I'm still waiting to get a date for the gynae hospital appointment. I hope it can be next week because I really want to know what I'm facing. I don't know how long CT Scan results take but I think ultrasound is more or less there and then.

DD's was high like yours, it was a combination of her cysts and endometriosis that caused it to eb elevated. Hopefully it will be the same for you.

I've never knowingly had endometriosis or fibroids. I had an abdominal ultrasound to check my ovaries a year or two before Covid, so six or seven years ago, and all looked fine then.

I hope you are doing ok.

Try not to worry too much. As PPs have said all sorts of other things can cause an elevated CA125. Just for reference when my mum had ovarian cancer her markers were 2000 x

This is really encouraging. I also know someone who survived it, but a close friend died.

Thanks, all of you, for the hope and encouragement. It is really helping me.

Can anyone tell me what to expect from the CT Scan? I've never had one before and in my mind they are quite scary and you have to lie still for a long time. I imagine it will be very uncomfortable.

I know it's noisy. Sudden loud noises always make me jump. Will that be a problem?

Yea my mums was in the 2000’s.

hers was peritoneal cancer.

200 could be any of the other things mentioned above but the good news is they aren’t hanging around in fidn8ng out the cause meaning if there is anything sinister treatment will start sooner.

It’s easy to sit in the internet and say “don’t panic”. But I empathise with your worries and so sending and and wishing you luck.

Just sending a handhold. Waiting is so horrible.

I'm not sure about the CT scan but when my friend had a noisy scan they gave her ear defenders and were really kind and supportive. They talked her through everything and told her exactly what to expect.

MRI are very noisy and they give u ear defenders. CT are fairly quiet. You may have to have an injection of contrast (colourless liquid they call xray dye). You’ll lie on the table which moves. Doesn’t take long. 15mins. Either wear clothes without metal like crop top bra, tshirt and leggings as otherwise you’ll have to wear patient gown.

MRI are a long tunnel. CTs are like a doughnut. I think you’re getting them confused

I think you are thinking about the MRI as loud and needing to stay still for a long time.

I recently had a CT with contrast, which meant lying on a bed in a large doughnut type machine, smaller than an MRI but still can feel intimidating especially as you're waiting on what's already a potentially scary diagnosis.
It is not noisy, I think mine was about 15 minutes and they were looking at my neck, chest and cervix areas. When they administer the contrast there's a weird warm feeling, almost like you've wet yourself, and they warned me about this.

If you also need an MRI, this is the one that's noisy and I was in about 45 minutes but they did say the length really can vary pending which area they are scanning. This one can make you feel more claustrophobic and the noise isn't nice, but you are given headphones and a panic button which you can press anytime and they can pause the machine so you can move/ sneeze/ cough or just take a moment if overwhelmed.

I've just had surgery to remove a primary tumor and waiting on the results and decision from the MDT so I know how horrible and anxious you're feeling right now.
Just take each day as it comes and be kind to yourself

Just to reassure mine was high (just slightly lower than yours) and it is endometriosis and cysts.

It's a ok my sister had this back last year , they took out the offending bit and she had chemo and radio therapy all healed and she has been clear of cancer for 6 months , the op was a bit stiff afterwards and took um a month to settle ,and tired during the therapy radio etc, fully ok now . She Gill is 53 l hope this helps ,thinking of you

Before i was officially diagnosed with endometriosis my ca125 markers were coming back very high. I had fibroids and cysts all over my ovaries/womb, and surgery confirmed this. It isnt always cancer, so whilst they investigate try not to worry too much.

Yes, you're right. I've never had either and I had them muddled.