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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

Original poster

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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5
Reallytoughsitu · 08/09/2025 18:55

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This message has been withdrawn at the poster's request

dancingwhilstfacingthemusic · 08/09/2025 18:56

Sending all my best wishes to Joy and her DH. I hope you're soon feeling much better, Joy, and back home. I'm a few months out from 16 rounds of chemo and a load of operations for cancer and gradually rebuilding what is my remodelled life.

BooneyBeautiful · 08/09/2025 18:58

Ohjoyohbliss · 30/07/2025 11:50

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?

They aren't noisy and don't take long. MRI scans are the noisy ones. Hope all is well.

HesarealJacquelineHigh · 08/09/2025 19:02

This reply has been deleted

This message has been withdrawn at the poster's request

People really need to look at the date this thread was started, and at least read OP’s posts before replying. The thread has moved on a lot since then and OP has been diagnosed with lymphoma.

TattiePants · 08/09/2025 19:04

BooneyBeautiful · 08/09/2025 18:58

They aren't noisy and don't take long. MRI scans are the noisy ones. Hope all is well.

Show quote history

You’d really think that on a sensitive thread such as this people would at least read all of the OP’s posts.

Joy (and Mr Joy), sending you hugs and hope the infection clears soon.

Ebeneser · 08/09/2025 19:06

Spaglasagneaise · 30/07/2025 12:16

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.

Do standard blood tests check for CA125, or is it a specific one?

Vaguelyclassical · 08/09/2025 19:09

Ohjoyohbliss · 30/07/2025 11:37

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.

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For what it's worth, I had that figure massively elevated thanks to a large ovarian cyst/hydrocele/a limited amount of endometriosis. That was 35 years ago.

MNHQ
LilyMumsnet · 08/09/2025 19:10

Ohjoyohbliss · 28/08/2025 18:18

The waiting is over!!!

I have diffuse large B cell lymphoma. It is an aggressive cancer and, at the rate it has developed, I might not be long for this world without treatment. However, the good news is that it is usually very responsive to treatment, with a real possibility of a complete cure.

Treatment will consist of six cycles of chemo, spread three weeks apart. The first will start tomorrow and will be given in hospital over two days, with subsequent cycles done in a day as an outpatient.

The chemo consists of two monoclonal antibodies and two chemotherapy drugs. One of them can cause heart problems so I will have a heart scan before the second cycle. There isn't time to get one before the first session tomorrow, even though I was told days ago that one was being booked. They don't want to delay starting the treatment by even a single day, as the cancer is so aggressive.

This makes the long wait for the CT abdomen report even more frustrating. Can you tell I am still extremely angry about it?

The chemo can have some severe side effects and complications so I just have to hope that it goes smoothly. However bad, it's got to be better than the alternative.

Anyway, it's good news that I have a diagnosis and a treatment plan. I'm also feeling a lot better today, possibly from yesterday's IV steroids. Future steroids will be oral.

OP

First of all, we've pinned this for you so it appears at the start of your thread - just to help keep this discussion up to date for new-joiners who want to wish you support and advice.

Secondly, sending lots of love from all of us at MNHQ - we wish you the very best for your treatment. Flowers

Beeloux · 08/09/2025 19:11

Beeloux · 08/09/2025 18:28

Try not to worry op. I had an elevated ca125 and suspected ovarian cancer. Turned out to be a benign dermoid cyst.

So sorry Joy, just read your previous posts. Wishing you all the best and a speedy recovery. ❤️

amusedbush · 08/09/2025 19:12

LilyMumsnet · 08/09/2025 19:10

OP

First of all, we've pinned this for you so it appears at the start of your thread - just to help keep this discussion up to date for new-joiners who want to wish you support and advice.

Secondly, sending lots of love from all of us at MNHQ - we wish you the very best for your treatment. Flowers

Show quote history

I just reported this thread a minute ago asking MNHQ to add a line to the OP so that people will RTFT, so please disregard my message ❤️

Igotjelly · 08/09/2025 19:13

Oh no wishing her all the best, you must be so proud of her ❤️

myheadsjustmush · 08/09/2025 19:14

I'm sorry to read your update Mr. Joy - I'm sending hugs to you both, and I hope Joy is home and feeling better very soon.

FWIW, my DH was diagnosed with stage 4 aggressive diffuse large B Cell NHL two years ago. He received 6 cycles of R-CHOP at 3 weekly intervals. He was very, very poorly, but thankfully, the treatment worked, and he has been in remission ever since.

.

Horses7 · 08/09/2025 19:16

I’ve read all your posts Joy and just want to say what a remarkable woman you are and, although you may disagree, you are obviously very brave. So pleased you are receiving the correct treatment but sorry you now have an infection - I hope that clears up quickly.
How frustrating not to get prompt treatment from some of your nurses - hope that improves.
Thinking of you and your wonderful husband and sending lots of love and luck - everything crossed for you - sorry that’s the best I can do.
Please let us all know how you’re doing but save your strength if you need to, that’s more important.

Hungrybrood · 08/09/2025 19:17

I hope you feel much better soon, Joy! 💐

Yodeldodeldo · 08/09/2025 19:18

I just want to wish you all the very best with your treatment OP, if I could donate strength to you I wouldn't hesitate x

Mummalovesyou · 08/09/2025 19:20

Oh my goodness.
Im so sorry to hear that. Sending her well wishes and love ❤️ big hugs to you aswell Joys DH xx

BooneyBeautiful · 08/09/2025 19:20

TattiePants · 08/09/2025 19:04

You’d really think that on a sensitive thread such as this people would at least read all of the OP’s posts.

Joy (and Mr Joy), sending you hugs and hope the infection clears soon.

Show quote history

Not sure what you mean? I meant I hope that she doesn't have ovarian cancer and that all is well. Have I said something wrong?

SleepLuxury · 08/09/2025 19:20

OP I have read your thread and am sorry the NHS has been so slow and shit to diagnose you. I work in a different speciality, but I’m often frustrated at poor communication and slow systems as a clinician, never mind patient.

Anyway, I’m glad you have a diagnosis and a treatment plan at last.

Thank you to your husband for the update and I hope you recover soon.

By the way, I think you write very well.

Sending hugs x

Anotherpinkginplease · 08/09/2025 19:29

Sending good thoughts your way, no experience with ovarian cancer but my mum had breast cancer (survived) so I have some idea of how terrifying it can be. Wishing you well!

Douchey · 08/09/2025 19:32

Ohjoyohbliss · 08/09/2025 16:17

Joy's DH here
Joy picked up an infection and was readmitted Saturday night. On IV antibiotics and fluids, slowly improving but still very poorly.

Wishing her all the best, and you x

DiscoNights · 08/09/2025 19:35

I wish you and your family all the best, a safe recovery and happy times ahead 💐

Enigma54 · 08/09/2025 19:35

BooneyBeautiful · 08/09/2025 19:20

Not sure what you mean? I meant I hope that she doesn't have ovarian cancer and that all is well. Have I said something wrong?

Show quote history

Joy has been diagnosed with lymphoma. She has a treatment plan, but a recent infection, had caused her to be readmitted to hospital.

Thebluespoon · 08/09/2025 19:42

Wishing you all the best Joy x

PinkyFlamingo · 08/09/2025 19:46

Thinking of you both

DestituteDesperate · 08/09/2025 19:46

Just reading this post - sorry to hear about your diagnosis but sending you prayers and healing vibes Joy and Mr Joy too.