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Cancer

Find advice & support if you or someone you know has been diagnosed with cancer

See all MNHQ comments on this thread

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

983 replies

Ohjoyohbliss · 29/07/2025 19:15

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 posts:
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Gymnopediegivesmethewillies · 17/08/2025 13:48

How did your CT scan go Joy? X

Ohjoyohbliss · 17/08/2025 16:13

Gymnopediegivesmethewillies · 17/08/2025 13:48

How did your CT scan go Joy? X

I didn't need the contrast dye for this one, so it was much easier than the first one. No idea when the results will be back. I just hope it doesn't take nearly a fortnight, like the last one.

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Ohjoyohbliss · 17/08/2025 22:15

About 9pm - on a Sunday! - I had a phone call from a haematologist. She wants me to go to hospital tomorrow for a biopsy of a lymph node. If there's a bed, they might keep me in overnight while I have clot busting drugs for the mesenteric venous thrombosis. They can't treat that until after the biopsy.

At the moment there's no bed available, so another patient needs to go home or die before I get there.

OP posts:
Gymnopediegivesmethewillies · 17/08/2025 22:22

Oh my goodness! When things move they really move!

Is the morphine helping?

Greentrilby · 17/08/2025 22:23

Thank heavens someone has pulled their finger out and is taking action. How are you feeling?

NewAgeNewMe · 17/08/2025 22:30

Oh gosh, I hope now they have theyr act together things start getting moving for you. Good luck

Ohjoyohbliss · 17/08/2025 23:36

I don't know WTF radiology are doing because on my NHS App it now says this (see screenshots.) I hope we can get this sorted tomorrow.

Likely ovarian.  Terrified. Anyone available for a hand hold?
Likely ovarian.  Terrified. Anyone available for a hand hold?
OP posts:
Gymnopediegivesmethewillies · 18/08/2025 01:00

It’s clearly an error since you’ve already had it. Perhaps they entered the referral incorrectly because it happened so quickly. Doesn’t help the stress levels though 🙄

TroysMammy · 18/08/2025 06:41

If the GP arranged this prior to you having it recently at the hospital then they won't do another one as events have moved on and they would reject the earlier referral.

NewAgeNewMe · 18/08/2025 10:05

thinking of you today 💐💐

Ohjoyohbliss · 18/08/2025 11:18

Good news: there's a bed for me.

Bad news: they might not have capacity to do the biopsy today.

Update: More bad news: the haematologist has reviewed the CT scan with a radiologist and they have decided that the affected lymph nodes are too deep in the abdomen and surrounded by blood vessels so it would be unsafe to try to get a biopsy without damaging the blood vessels.

There's a lymph node in the upper abdomen which they can access via an endoscopy, but there is no endoscopist in today, so that has to wait until tomorrow.

I've had the blood-thinning injections, although they now think the "blood clot" is actually a tumour. They said clots can form on the tumour, so the blood thinners are still necessary.

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indecisivewoman81 · 18/08/2025 11:39

I'm glad that you have a bed and hope they start to provide a bit more clarity for you. It's awful that you are being left in limbo like this. I am thinking of you

NewAgeNewMe · 18/08/2025 12:30

At least you are now hopefully being somewhat looked after 💐

chatgptsbestmate · 18/08/2025 13:11

Good lord. What a roller coaster this is for you. Sending love ❤️

Mischance · 18/08/2025 14:15

With my medical problems the breakthrough was when I was admitted - no more faffing around trying to get tests and procedures sort - all done during the admissions.

Hopefully you can rest and let it all get done as speedily as possible. Sending lots of good wishes.

Poodlelove · 18/08/2025 16:43

I am so glad that you have a bed and that they are going to start to sort things out and soon you will have a treatment plan.
Thinking of you .

Gymnopediegivesmethewillies · 18/08/2025 17:21

Gosh you are really being hammered by one thing after another at the moment, I’m so sorry. I hope they start giving you answers and making a plan to move forward soon. Are you more comfortable than you were?

Ohjoyohbliss · 18/08/2025 17:38

Now been told that the endoscopist is off tomorrow as well so the earliest is Wednesday but it's more likely to be Thursday or Friday. Then the analysis of the biopsy can take a week, so realistically it will be the end of next week or even into September before I can start any treatment for the actual cancer.

OP posts:
itsgettingweird · 18/08/2025 17:43

Is there another hospital nearby where they have a endopocist? Ask about being moved or going elsewhere for the test?

TheLivelyViper · 18/08/2025 18:00

itsgettingweird · 18/08/2025 17:43

Is there another hospital nearby where they have a endopocist? Ask about being moved or going elsewhere for the test?

Yes ask if you can go to another perhaps bigger hospital? Have a look online, for any near you with good specialists and facilties and anything that most don't have and ask to go there. Why is there only one endoscopist? I'd ask them about that.

Is there anything else they can do for you until the endoscopy? Any other scans? Also get them to go through the reports of all your scans including the Chest CT (if you've done that yet, if not get them to do it) and ask to see the images and for an in detail report on it. What ward are you on - oncology? Or a different ward? Ask about other scans and tests? Then ask about a provisional treatment plan and when the MDT meeting will happen.

I'd also ask about seeing a district nurse or macmillin nurse (someone who knows services locally to refer you to for mental health support, support groups, occupational therapy help you may need in the future depending on any symptoms and surgery, anything really and things your doctors might not know about, or even to just have a chat that's not too medical. They're used to people not knowing what to say and it can be nice to have a zero pressure conversation. Sending love and hope you get great care.

Onekissisallittakes · 18/08/2025 18:45

OP I'm so sorry you're going through this, what a horrible shock (although I know you had your suspicions). Cancer treatment has come such a long way, even if it's not curable (which I hope it is) hopefully they can manage it and sort out the pain and sickness. Hugs xxx

Weepixie · 19/08/2025 01:52

Joy, do they know yet what cancer it is yet? And I’m sorry if that doesn’t sound right but outside of the cancer I had I don’t really know how to approach talking or asking about cancer.xxx

Ohjoyohbliss · 19/08/2025 06:17

They don't know what cancer it is, but they suspect lymphoma. They need to biopsy an affected lymph node to be sure, and what type of lymphoma; that's why I came in yesterday. But then they decided that most of the affected nodes are too inaccessible to biopsy even with a CT-guided biopsy..Hence needing an endoscopy to biopsy something accessible from the upper GI tract.

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Ohjoyohbliss · 19/08/2025 16:29

Right. I mentioned that my abdominal lymph nodes are too difficult / risky to access. However, today the thorax CT scan report is back, showing more enlarged lymph nodes, which gives more options for biopsies, notably one that could be accessed via a bronchoscopy and one in an armpit, as well as the endoscopic one mentioned yesterday.

The armpit is easiest/safest and someone was available to do it today, so that's been done. However, the guy who did it said that it isn't much enlarged and he won't be surprised if it's not definitive. Results won't be available until next week. He said we should still press ahead with a biopsy one of the other nodes.

The endoscopist is off all week, it seems. Never get ill in August! So the new "earliest possible" date for that is a week today, but I imagine he'll come back from holiday to a whole heap of urgent requests and mine won't be top of the heap.

It might be possible to arrange a bronchoscopy this week, but my consultant (haematologist) has taken advice and the endoscopy is more likely to yield clear results than the bronchoscopy, as it's difficult to get a large enough sample size with the latter. So he wants to wait for that.

I asked if I can go anywhere else (Leeds, Sheffield, private) to get it done sooner but he said he doesn't know and can't arrange it. He will look in to the risks of a bronchoscopy versus the likelihood of a clear diagnosis from it.

In the meantime, the gynae consultant is taking my case to MDT on Thursday because of the suspicious-looking cervix from the first CT scan which might need further investigation.

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chatgptsbestmate · 19/08/2025 17:03

Well.....at least the fact that you're there, in their face, taking up a bed, at least means you are a pressing case. I'd try to find out about a private test if I were you

I'm thinking about you multiple times a day

Sending love ❤️