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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.

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Enigma53 · 14/08/2025 20:51

HonestOpalHelper · 14/08/2025 20:33

CT scan is not noisy at all, that's MRI. With a CT scan you lie on a couch, possibly with an iv line feeding in a contrast dye.

The couch slides through the doughnut and comes back out, the doughnut is only about 18 inches deep, not a tunnel.

Then you will hear a whirring noise and the procedure will repeat. The first run is just a dry run and the image taken on the second.

The noise is caused by an x ray tube running round a track inside the doughnut opposite which is a sensor - the x rays pass through you hitting an intensifier which converts them to light photons which is detected by the sensor.

As you are going through it as it runs round it takes a spiral image, which the computer can re-construct as a 3 dimensional view.

Clever stuff, a British invention financed by the Beatles that was derailed by the Sex Pistols - the first CT scanner was built by EMI who had the Beatles signed to them, which in part funded the development of the scanner, then they signed the Pistols and the controversy over that TV interview caused major headaches for EMI who started to collapse as an electronics conglomerate leaving the Dutch and Germans to run with it.

Superbly explained!

Ohjoyohbliss · 14/08/2025 21:04

Enigma53 · 14/08/2025 20:51

Superbly explained!

But almost two weeks too late.

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Mischance · 14/08/2025 21:43

I am sorry to hear your news today and how painfully slow it has all been. I hope very much that you will soon have a treatment plan in place.

Enigma53 · 14/08/2025 22:03

Ohjoyohbliss · 14/08/2025 21:04

But almost two weeks too late.

I know. I’m sorry, it isn’t good enough at all.

NewAgeNewMe · 14/08/2025 22:53

Oh my heart goes out to you & your dh. I have a friend who had cancer of the spleen and another with lymphoma, both now in remission several years on. Best of luck. X

Thmssngvwlsrnd · 14/08/2025 23:25

So sorry to read your update. Sending you strength and love x

Jaffaisitacakeorbiscuit · 15/08/2025 08:03

I am so very sorry to hear your update. I wish it were different news.

Putting aside the emotions and focusing on the facts : the mesenteric vein thrombus is an emergency problem - did the gp start you on an anticoagulant? If not then he/she needs to obtain urgent treatment advice about managing it from haematology/oncology team.

Ohjoyohbliss · 15/08/2025 09:50

NewAgeNewMe · 14/08/2025 22:53

Oh my heart goes out to you & your dh. I have a friend who had cancer of the spleen and another with lymphoma, both now in remission several years on. Best of luck. X

That's good to hear, thank you.

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Ohjoyohbliss · 15/08/2025 09:53

Jaffaisitacakeorbiscuit · 15/08/2025 08:03

I am so very sorry to hear your update. I wish it were different news.

Putting aside the emotions and focusing on the facts : the mesenteric vein thrombus is an emergency problem - did the gp start you on an anticoagulant? If not then he/she needs to obtain urgent treatment advice about managing it from haematology/oncology team.

No. He has asked haematology for advice. Because the CT scan report took so long, I have had this clot for at least a fortnight. It's scary.

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Ohjoyohbliss · 15/08/2025 09:55

I'll be having a chest CT later today. Brilliant DH managed to get me a cancellation slot.

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jeanne16 · 15/08/2025 09:56

Could you push for an MRI as well?

LadySuzanne · 15/08/2025 10:37

Ohjoyohbliss · 14/08/2025 15:36

There's good news...

I rang the consultant's secretary and the GP (spoke to Dr for more pain relief and asked him to chase CT.) Consequently the CT report has been expedited. I can only see the summary on my NHS app; it says the full report will be available on ICE later on; presumably I don't have access to this.

The summary says:
Result: Satisfactory
Follow up action: No further action

So what the fuck is causing all these symptoms?

DH is speaking to the GP now.

If a copy of the full scan report is not available on your medical record app or the full copy has not been sent to your GP, ask for a full copy to be sent to you.

I have always asked consultants or their secretaries for copies of full reports following MRIs. U/S, CT, X-ray etc and these are provided to me on paper or via email.

BeaLola · 15/08/2025 10:44

Thinking of you with all this going on - I hope this afternoon goes smoothly and you are given a clearer picture

I can only imagine how you feel but I do know how awful it is to hear that you have cancer. Hope things are now speedily put in place to treat you

TheLivelyViper · 15/08/2025 11:53

LadySuzanne · 15/08/2025 10:37

If a copy of the full scan report is not available on your medical record app or the full copy has not been sent to your GP, ask for a full copy to be sent to you.

I have always asked consultants or their secretaries for copies of full reports following MRIs. U/S, CT, X-ray etc and these are provided to me on paper or via email.

Is this more than the details in a letter from the consultant as in the basic details or would it be the same thing? Just wondering as I got a letter of a few lines going through MRI findings and if the full report is more detailed I'll ask my consultant's secretary about it. Sorry to disrupt the thread.

OP I'm glad you got a cancellation CT that's great, I'd ask the gynecology consultant if he'll be referring you to the MDT and whether he'll stay involved in it or not. Obviously I'm guessing that depends on where they figure out the cancer comes from, definitely call Macmillian for advice they'll know of any services in the local area which can be helpful. I'm wishing you the best and great care and medical staff.

Ohjoyohbliss · 15/08/2025 12:47

@TheLivelyViper "Sorry to disrupt the thread."
Don't apologise - if others can get help from knowledgeable people on this thread, that's great.

I actually called Mcmillan yesterday but gave up after 11 minutes on hold. I don't know what I would have said to them anyway.

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Ohjoyohbliss · 15/08/2025 12:52

My relatives sent me flowers. White lilies. A bit funereal.

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LadySuzanne · 15/08/2025 12:57

TheLivelyViper · 15/08/2025 11:53

Is this more than the details in a letter from the consultant as in the basic details or would it be the same thing? Just wondering as I got a letter of a few lines going through MRI findings and if the full report is more detailed I'll ask my consultant's secretary about it. Sorry to disrupt the thread.

OP I'm glad you got a cancellation CT that's great, I'd ask the gynecology consultant if he'll be referring you to the MDT and whether he'll stay involved in it or not. Obviously I'm guessing that depends on where they figure out the cancer comes from, definitely call Macmillian for advice they'll know of any services in the local area which can be helpful. I'm wishing you the best and great care and medical staff.

"Is this more than the details in a letter from the consultant as in the basic details or would it be the same thing? Just wondering as I got a letter of a few lines going through MRI findings and if the full report is more detailed I'll ask my consultant's secretary about it. Sorry to disrupt the thread."

Yes, I request copies of the consultant radiologists' full reports, as provided to my hospital consultants.

So I have all the reports for the U/S, MRI and CT scans I had for a suspected uterine leiomyosarcoma cancer in 2022. These are provided by the consultant's secretary after the results have been discussed with me.

I also requested a copy of an endometrial biopsy report as the registrar's follow-up letter lacked clarity on its findings (though normally I don't request the full path lab report for biopsies).

When I had my hip X-rayed by the NHS in 2022, prior to a planned private hip replacement operation, I also requested a copy of the report. The X-ray had been ordered by my GP, so he was able to provide a copy.

I also wanted a copy of the X-ray imaging as images are not sent to the GP and he could not get a copy out of the hospital's system. For this, I had to go to the hospital in person and fill in a three page request for medical information form, then wait while the imaging was copied to CDR for me to take away. I could then view my X-ray on my own laptop.

The full scan reports may also include details of incidental findings, like kidney cysts, lung nodules, gall bladder stones etc. My CT scan specifically for the suspected uterine leiomyosarcoma also reported on my severe osteoarthritic hip (mirroring the findings from the already carried out X-ray) and the (already known about) thyroid nodules.

Gymnopediegivesmethewillies · 15/08/2025 13:00

Ohjoyohbliss · 15/08/2025 12:52

My relatives sent me flowers. White lilies. A bit funereal.

Oh blimey! Are they usually tactless?

Well done on sorting the CT scan. Have you been told who (which specialty/consultant) will be responsible for you now? I’m concerned that you are ‘floating’ between departments and you need some joined up thinking and action. It’s bloody Friday again so things tend to drag to a halt.

How are you doing in yourself?

LadySuzanne · 15/08/2025 13:08

OP, I am so sorry to hear that the findings on CT are so worrying.

I know you will have a great deal on your mind right now, but if I were you, at some point, I would be asking the GP practice manager why your medical record has the CT findings report marked as "Satisfactory, no further action required."

Joystir59 · 17/08/2025 01:31

Just want to say I hope you get a clear diagnosis soon and understanding of treatment options, it must be horrid to be in such limbo. How great to have such loving support in your husband.

Ohjoyohbliss · 17/08/2025 01:40

Gymnopediegivesmethewillies · 15/08/2025 13:00

Oh blimey! Are they usually tactless?

Well done on sorting the CT scan. Have you been told who (which specialty/consultant) will be responsible for you now? I’m concerned that you are ‘floating’ between departments and you need some joined up thinking and action. It’s bloody Friday again so things tend to drag to a halt.

How are you doing in yourself?

Well there's a referral in to haematology because I might have lymphoma and have a blood clot. But mainly the gynae consultant I saw on Tuesday is still in charge of my case and will take it to MDT.

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Ohjoyohbliss · 17/08/2025 01:43

Joystir59 · 17/08/2025 01:31

Just want to say I hope you get a clear diagnosis soon and understanding of treatment options, it must be horrid to be in such limbo. How great to have such loving support in your husband.

Yes, I'm lucky with DH. I've read on here about others being very unsupportive when their wives get ill.

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Ringthebell26 · 17/08/2025 01:55

I had high CA125 result about 15 years ago. I panicked thinking ovarian cancer. My mum had just died from bowel/ovarian cancer.

It wasn’t. Apologies I can’t remember what was the cause. I’m still here in rude health. I wish you the same outcome. X

Ringthebell26 · 17/08/2025 01:59

Apologies for my last post. I hadn’t read your updates..Wishing you the very best of luck. Xx

whatisforteamum · 17/08/2025 10:42

Wishing you the best Joy.