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.

I had multiple CT scans that showed no tumours. It was only an mri that picked up a very small tumour. Please ask for that.

I need to stop looking at the NHS app because clearly it is very misleading. I got called to see the GP and it is, in fact, very bad news. The worst.

My spleen and abdominal lymph nodes are cancerous but it's not clear where it originates. Could be spleen, could be cervical, could be lymphoma. Whatever, it has clearly already spread.

I also have a blood clot in the mesenteric vein. Don't know if/how that's related.

GP has done a fast track haematology referral for the ?lymphoma and will leave the rest to the gynae consultant. The latter is in surgery this afternoon so I'm not expecting to hear anything until tomorrow.

Dr Google says that mesenteric venous thrombosis is a very serious condition on it's own, with some potentially life-threatening complications. Great. Just what I need.

DH keeps crying. At least I know he really loves me. I've sent him to the pub to take his mind off it.

I cried with pain this morning but have been dry-eyed since getting the news. Im sure it will come out at some point.

OP, I’m so sorry. The misleading high of that CT, followed by the news you’ve got must be horrendous. I hope they start moving a bit more quickly now, it’s outrageous how things have dragged, and a full and comprehensive diagnosis and prognosis, plus treatment plan is put together for you so you know where you are. Not knowing is awful.

I didn't really get a high on reading the summary, I was more puzzled because I was looking for an explanation of my symptoms and it didn't provide it.

I'm so sorry op, I hope they take it more seriously at least going forward.

The doctors have taken it seriously from the start, thankfully.

It turns out I have a blood clot AND cancer and it still took them nearly two weeks to report it.

I'm sorry to hear this @Ohjoyohbliss I'm never quite sure whether good news stories are welcome at this point or not as there does need to be space for people to acknowledge what a blow this is for you and yours and how scary it is... But... my mohter was disgnosed with a cancer that turned out to bladder cancer (unusually in a woman) which had already spread to her lymph glands. After chemo and radio therapy she had a full recovery and died 15 years later of something totally unrelated. They estimated her chances of living 2 years at 5%.

If that's helpful channel my inner mother and if unhelpful, pretend I never said it.

@Kewcumber Good news stories are very welcome. Thank you.

I’m so sorry you have received such upsetting news. I guess without knowing the origin they are struggling to place you with a specialty? Maybe that’s where the MDT comes in? I’m very surprised things haven’t moved faster and it’s been down to the GP to break the news. Has the GP been able to offer any way to make you more comfortable while you’re waiting for what happens next?

Thinking of you and your DH X

So sorry to hear your update OP.
Sending you love.

I’m so sorry to read your update @Ohjoyohbliss and what an absolutely shocking performance by the NHS.

Having said that, when I had cancer, once I was into the NHS system it actually dealt very well with me. I’ve experienced the waiting for results and I got so sick of waiting I spent money I couldn’t afford on an MRI to speed things up.

I do know that blood clots with cancer is a thing. I had multiple blood clots in both lungs last year and the first thing they did was check me for cancer. Thankfully I was still clear.

Anyway, do keep posting to let us know how you are getting on. I immediately thought, that’s it, I’m dead but the treatments for all types of cancer now are so much better. My ex has been living with lymphoma for seven years and he’s pretty good. Sending love and strength. xx

I'm so, so sorry to hear this. I've been jumping on every update, hoping you would have good news. Thinking of you and hoping there will be positive news for you regarding the next steps and treatment. xx

So sorry to read your update. I can’t advise you on your treatment but would advise you ask your doctor ‘where can I look
up information about this?’

I like to read and find the ‘don’t be googling your symptoms’ comments from people difficult to take, so now I ask ‘tell me where I can read more about this’ as this really helps me. All the very best to you x x x x

I’m very sorry Joy. I know nothing will make you feel better right now but we are here for you even if it’s only to listen. ❤️

So sorry to hear this, have been thinking about you. Really hope treatment from now on is efficient and excellent. x

Sorry to read your updates, I hope you can get a treatment plan sorted and started as soon as possible

Yes, I'm on the good stuff now ( morphine. ) Haven't actually taken any yet

I’m so sorry to hear this news. I think things will spring into action very quickly now you know what you are dealing with.
i can only speak for myself, but once i received my diagnosis, i found the treatment to be really good and efficient. I hope it’s the same for you. Sending you big hugs.

I’m so sorry to hear about your news! I had stage 4 hodgkins and I’m 5 years in remission. I hope it’s just as positive for you!

Oh gosh, that's brilliant!

I am so sorry that you have had this terrible news ,I hope that the doctors can sort out a treatment plan asap and you are in the best hands , everything will be fast tracked and you will be assigned your own nurse that will sort things so you know exactly what is going to happen and when.
Thinking of you .

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.