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.

Thank you for taking the time to post this. I hope that your surgery got it all and the news from the MDT will be good.

I had my CT scan this morning. It went OK apart from them having trouble finding a vein to inject the contrast fluid, so I've ended up like a pincushion.

They said it will be a week before the results are available. This past week I seem to be getting worse rapidly so I just want this over with ASAP. I've lost more weight, started with nausea and vomiting, and the pain is worse.

I haven't yet got a date for the 2ww gynae appointment, although the referral was only done on Tuesday and obviously it makes sense to wait until the scan results are available.

Im sorry youre having such a horrible time of things OP. Good the scan is done and appointment to follow. Fingers crossed for you to get seen soon and it to be a benign cyst or something. It’s so stressful waiting for results. I hate it.

I'm losing weight and my tummy is very swollen. I feel as if there is a mass in my abdomen pressing on my internal organs making it difficult to eat much. I had a day in the week thinking "maybe it could be endo or fibroids" but now I'm back to assuming the worst.

Lots of love to you OP. No experience - just want to hand hold x

Thank you

It seems you are going to the gp and scans etc , if this is nasty stuff they can cure 99 per cent of thing you are doing everything right , Try not to panic , don't, don't look up med conditions on Google as it does not help ,so very sorry this has happened ,once the blood tests ,scans are done the nhs will come up with a treatment plan

I had a ca125 of over 400. Initially thought it was ovarian cancer but was actually endometrial cancer Had full hysterectomy followed by 6 sessions of chemotherapy.

While none if this was fun, it was also not terrible and I have been in remission for 3 years. Checkups every 3 months show ca125 around 11.

So it's not necessarily all dreadful.

Can I ask what symptoms you had?

I'm so pleased that things are going well for you now.

Severe abdominal pain and ascites.

Hi, feel free to direct message me if you want.

Raised CA125, like others have said, can be raised for multiple reasons - including chest infection or inflammation as I had once!! (Had slipped on ice, it hurt but didnt realise I'd cracked a rib at the time, but did have raised CA125 as a result.)

That being said, I had ovarian cancer, age 33 just after giving birth. Here I am with a happy 13 year old and am healthy. And I had advanced stage 3c which is harder to treat. So it is possible to have it and beat the odds.

To set expectations, great they are getting you in for scans etc, just the diagnosis may not be as quick as you would think. Due to my age when suspected (usually ovarian is a post menopausal cancer but dont let them fob you off with that - there are many of us who got it young, just not as common), I had scans and then weeks of tests and biopsies to determine as much as they could before coming up with a diagnosis and plan. I then did get a diagnosis and had chemo and surgery over a year. Hopefully things have moved on in the last decade but if not, you may need to figure out a coping strategy during this - understandably- difficult time of waiting for a diagnosis.

IF it is ovarian cancer (and statistically unlikely to be) you can get through this, like I did. There are a lot of support options out there - I would recommend Maggies Centres who were absolutely brilliant for me, offering support, guidance and a safe place to be to understand and get through it all - the local Maggies Centre was my sanctuary during treatment and the years after.

Wishing you all the best 🌼

I’ve been where you are. My CLA score was 2010! I had stage 3c HGSC. I’m one year into treatment and ‘no evidence of disease’ at present.
I take drugs and have a three weekly infusion. It’s been an emotional roller coaster . The chemo was tough but doable.
Please pm me if you want to chat. Sending big hugs.,

"No evidence of disease at present" is amazing! I hope you continue to do well.

@EweCee I'm a lot older than you were and post menopausal so the "right age" to get it.

I really hope that it doesn't take weeks and weeks to get a full diagnosis and start treatment because my symptoms are getting worse rapidly. I just want this cut out of me now.

Worsening symptoms:
The pain, which was just in the centre of my abdomen, is expanding up and out to under my rib cage. It's getting worse. Until recently, it didn't stop me sleeping but now I'm finding it hard to sleep. Paracetamol isn't touching it.

I can't get comfortable whether standing, sitting or laying down. Laying down is slightly better so I'm spending a lot of time in bed, which is frustrating but I don't seem to have the energy or concentration to do much else.

Three days ago I started being sick. I can't seem to keep my anxiety medication down and I could really do with that.

.I’m having chemo at the moment for ovarian cancer. Managing life as normal.
It was caught early, cancer was confined to my ovary and removed at my first surgery, had a completion surgery where there was no evidence of disease found. Chemo is preventative for me.
I hope you get some answers and a plan if needed soon

Oh and big thanks to those who offered to PM. I might take you up on it when I get an official diagnosis. At the moment, as some of you have pointed out, it could be anything.

As others have said 200 would be quite low for ovarian cancer. I have pain and bloating and have an 8cm endometrioma on my right ovary. This means I have advanced endometriosis which I didn't know about. I was referred under the 2ww gynae and am booked for a laparoscopy in 4 weeks (9 weeks from referral) to remove the cyst and any endometriosis they find.

I also have thickened womb lining which could indicate endometrial cancer. Due to my age and circumstances (recently stopped breastfeeding so thickened lining could be from hormonal fluctuations) the consultant said likely not cancer. Biopsies will be taken at the laparoscopy.

Fingers crossed for you it's not cancer. If it is, with a CA125 of 200 it will have been caught early.

Oh and for reference my CA125 was 62. The consultant said it's a test for inflammation, not cancer which is why so many other conditions can cause it.

I'm eating an anti inflammatory diet while waiting for the laparoscopy which I feel is helping slightly with my symptoms.

Hope you get sorted. My levels were way above that but for me it was a combination of fibroids, PCOS, endometriosis and adenomyosis.

sorry, I’ve mistyped the incidence rate and can’t edit.

Wishing you the very best

You seem to be getting worse quickly - this happened to me. You should probably go to A&E if you are in so much pain.
I was diagnosed in A&E after my symptoms became unbearable due to ascites.

I do seem to be getting worse quickly, but I've got an ultrasound scheduled for tomorrow so I'm not sure what else they would do in A&E?