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.

OP, I had a CA125 level of over 300 after presenting with excruciating abdominal pain. I too was put on the 2 week pathway, had a scan and I didn’t have ovarian cancer. Inflammation can cause a significant increase in CA125 which is why a raised CA125 alone isn’t used as a diagnostic tool for cancer.

Sorry to hear that. If it is cancer I don't know if you are open to integrative approaches ( combining conventional with additional treatment) but I would recommend reading Jane McClelland's how to starve cancer and looking for a Facebook group called patient led oncology which is tracking people's progress on combining approaches, many are doing so very successfully.

Action plan is in place, currently sat in the hospital radioactive and waiting for the PET CT.
I can tell you about those now if you'll need one!

I know the next few months won't be good, but I can plan and get things aligned (work, insurance, care plan) and it feels much better to be in an action mode than flapping about thinking the worst, so, whilst I sincerely hope others are right and yours is not cancer, I will say that knowledge is power and I hope you'll feel more in control when you know exactly what you're dealing with x

What does ‘patient-led’ mean?

This does sound like quite dangerous ground, and personally I would follow conventional medicine as recommended here: https://www.cancerresearchuk.org/about-cancer/treatment/complementary-alternative-therapies/alternative-cancer-diets

Could it be anxiety why you are not eating and feeling nauseas.

a couple of years ago I was going through something similar (all ok in the end) but the symptoms I had due to stress/anxiety and worry were like what you describe.

The data is led by patients. Proactively tracking and submitting data on their approaches and progress to researchers for collective evidence generation.

No, they haven't confirmed that it's cancerous. It's my imagination leaping to conclusions / trying to prepare myself for the worst. Could I be in this much pain and discomfort and would there be ascites if it were non-malignant?

What do you mean "Hmm"? Obviously they can't confirm either way until a biopsy is done. But blood test results (not just the CA 125) weight loss etc point towards malignancy.

Just to clear a few things up:

• I don't have any fibroids, unless this lesion in the uterine cavity turns out to be one

• The reduced appetite and feeling full quickly when eating started before I became anxious about cancer. In fact I thought I might have a hernia, not cancer, as the pain started when I had a chest infection and was straining with violent coughing fits. So it's not anxiety which has caused me to lose my appetite.

• The doctor has never said I have cancer. Officially, all these tests are to rule it out. I'm sorry if my wording has led people to believe otherwise or offended anyone. I'm just jumping to conclusions and fearing the worst.

Hey OP, I understood you well I think and when you said "it's" uterine you just meant whatever the issue is, it is there and not in the ovaries. I think one or two readers thought you were declaring it to be cancer, but I knew what you meant.

Fingers crossed for something simple to fix, ideally not cancer!

Just to say you can have hiatus hernia AND an unrelated cancer (I have both!). I had oesophagitis years ago and until you get the tablets (proton pump inhibitors) it can make you feel very queasy and unable to manage a full meal. Omeprazole or similar is what they tend to give. I hope it is that. You are doing everything right making sure all the checks are done.

Hi -- I was newly diagnosed at the end of last year (lymphoma, though at first I assumed the neck). Having my third PET-CT tomorrow and feeling nervous to see if treatment has held. Hope yours went well and the information that comes back will generate a good plan.

You don’t need to apologise for anything OP.
You are going through a very tough patch right now, it is very alarming to hear how much weight you have lost in such a short period of time. You must be feeling absolutely rotten. Obviously something is not right and I hope they get to the bottom of it soon.
Keep strong 💪

Have they offered you diuretics to help with the ascites? My late dp had ascites due to him wrecking his liver with alcohol & his symptoms were very much like being heavily pregnant, indigestion, heartburn, loss of appetite, breathless & no energy. Ask if there is any plan to drain the fluid & and estimate of how much there is, my late dp was extreme but had around 7 litres drained every time.

It’s ok. I understand. The day my 6kg ovarian cyst was found I completely lost my mind and my children had me in the care of psychiatrists the same evening. I had a complete breakdown but it had been a long time coming and I believe anything would have been the straw that broke the camels back that day.

Regarding the ascites - they can be caused by other conditions that are benign. As can the lesion. But I understand completely that you need to be thinking of a worst case scenario, that doing so can even be comforting whilst at the same time terrifying the wits out you. I used to get little pockets of bravery when I could calmly think of what my cyst might be, I could face it for a few minutes, then in an instant Id be terrified again.

My giant ovarian cyst was malignant, I had Mucinous ovarian cancer that was found at stage 1A and the only treatment I needed was a huge surgery that had me filleted like a fish with any internal organ I could live without being removed. I also had 5 years worth of check ups after the surgery but I’m now discharged.

Im sorry you’re going through such a horrible time of it and I understand that all the concern and ‘sorry this is happening to you’ in the world can mean absolutely nothing at all in the grand scheme of things when we’re petrified.

I just want to say that I am thinking of you OP ❤️

@Weepixie 6kg? OMG!!! I'm glad you have the all clear now.

No, when i speak to the GP, they just say to wait for the gynae appointment. The wait seems endless even though it's only been just over a week.

Tonight I slept well from approx 11 to 2am. Since then i have been in pain and unable to get comfortable. About an hour ago I felt sick so I've been hugging the loo and retching, which of course makes the abdo pain worse. I had taken an anti-emetic at bed time.

So now I'm sitting in bed eating ginger biscuits and feeling sorry for myself.

Oh bless you. What a nightmare for you. Don't take any notice of the "Hmm-ers". 🙄

I'd ring the hospital and get through to the secretary of the department dealing with you

I'd say to the secretary that this is affecting your sleep and its affecting you badly psychologically and you can't eat and keep being sick. Also you're losing weight

I'd see if the secretary can bring your appointment forward or at least tell you when it is

I'd also find out which Consultant you're seeing and if they have a private clinic local to you where you could see them for one appointment (usually around £200 to £300)

Thats what I'd do

Sending you love ❤️

I had bilateral non-cancerous cysts and endometriosis which caused elevated CA 125. Had scans, laparoscopy and was put on the mini pill and have had no symptoms for ten years now. I hope it's something really treatable, OP, good luck.

I know and understand ‘the fear’ @Ohjoyohbliss . I’m waiting for some biopsy results following a colonoscopy. I think the NHS 2 week pathway is fantastic but even 2 weeks is a lifetime when you are paralysed by fear and/or in pain. They now have the results from the tests they have ordered so hopefully it won’t be much longer, but if you have a consultants name you could try their secretary and see if an appointment is in the pipeline. I’m sure the biggest holdup is waiting for a consultant to review your case before an appointment is offered, so the secretary may be able to push it under their nose if they’re sympathetic.

If you feel like being proactive you could make an appointment privately (ideally with a doctor who works within the NHS too so they have access to to your results), you will probably get your NHS appointment before you see the private one, but it may make you feel better to have it lined up just in case? You can always cancel it if you don’t need it.

Best of luck, I know how scary it is x

The single consultation will give you so little information. The private and NHS patient notes are kept completely separate and so you would need to pay for separate private scans and blood tests, and other diagnostics and then follow ups with the consultant to even get a potential diagnosis. Also if you need an op for the biopsy you'd have to pay that too.

And the NHS is likely to request you have any and all of the same tests and procedures done on the NHS for several reasons.

In other words if you aren't in a position to pay for the operation too, don't waste yours or the consultants time. It's much more than the cost of a single consultation!

Some people try and do the single consultation to queue jump and the NHS, the consultant and the private hospital generally are against this.

Best of luck, OP

please consider a call to the GP at 8 saying you’re not coping with severe pain and vomiting and ask if they can arrange an emergency admission for further management of your symptoms .

That hasn't been my experience, nor my cousins
Perhaps it's different in different areas?

My (private) one off consultation involved the Consultant checking my notes and results online and telling me the results and talking me through the options and then referring me back to the NHS to see him there. No queue jumping. Apart from knowing the test results more quickly

Same for my cousin

I actually paid £175 for this but my cousin paid £250....different specialties.

Might be worth an ask? Nothing to lose, perhaps?