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.

wishing you all the best for tomorrow 💕

I believe that fearing the worst means when you do find out what the problem is you feel more prepared to handle what is thrown at you.

Sending best wishes for tomorrow.

Remember you can ring 111 any time.
And this thread will always be here for you for a handhold when you need it.

Sending you strength OP 💐

I would wait until the scan tomorrow if I were you. I was recently on the two week wait pathway for suspicions of womb cancer, however the biopsy was normal. It can obviously be a very stressful time however you are safely in the system and going through the right process.

I've had the USS. The sonographer said she's not allowed to tell me the findings, even though I said whatever she said wouldn't be worse than I'm imagining.

Compared with previous USSs I've had, she did a lot of clicking, which I think was taking screenshots. She only scanned my pelvis, not abdomen, because I had the abdominal CT on Saturday.

Results should be with the GP tomorrow.

Hi, really hope the results are good for you tomorrow :)

Hope it goes well tomorrow. The not knowing must be the worst. Even if the news is bad- and I’m sure there’s lots of scenarios where it is not cancer- hopefully there will be a plan in place very soon

Best of luck 🙏

USS results are in and it's uterine rather than ovarian.

One ovary normal, the other has a small cyst but no action required. No adnexal masses - this must be a very good thing, surely?

Endometrium is thicker than it should be and "there is a lesion within the [uterine?] cavity."

Small volume of free fluid [ascites] within the pelvis.

So hopefully hysterectomy to whip it all out and Bob's your uncle. Fingers crossed 🤞

However, it doesn't explain why I'm struggling to eat and have nausea and vomiting. Maybe there's something else going on too. I should have mentioned this when the GP phoned but didn't think.

I’m so sorry for all the worry you’ve had. I had an endometrial cancer diagnosis followed by a hysterectomy and very happy to answer any questions if it would help at all.

Thank you.

Did you have loss of appetite / difficulty eating / weight loss? What other symptoms?

Are you still undergoing treatment or are you ok now?

I think ascites causes difficulty eating and nausea and vomiting, and that it's quite difficult to tell what the volume of ascites is so although they say it's a small volume, it might be that that's causing your symptoms. I hope you get a full explanation and relief soon.

I have just had my head and neck cancer confirmed so very different to you, but the worry and the stress whilst going through all the tests and waiting has had an impact on me eating. I've lost 4kg in the space of a few weeks and for me it is all down to anxiety.
I do feel better since meeting the oncologist on Friday and knowing the plan.

Hopefully someone who has had similar to you will come forward to talk about their experience but perhaps like me it's due to the stress as opposed to anything physical?

So glad you have your results and know where you stand now. I hope it will be a quick hysterectomy and all done for you.

ForestFlowerFairy - hoping you will get speedy treatment.

Im sorry you have confirmed cancer but I hope the definitive diagnosis helps you move forward with a treatment plan.

My difficulty eating feels physical rather than anxiety caused but who knows? I have lost almost 5.5kg in about 7 or 8 weeks. Because I 'm eating so little now, the loss is accelerating.

@Ohjoyohbliss Any loss of appetite I had was more to do with the worry rather than a physical cause.

Following the total hysterectomy which was laparoscopic my diagnosis was confirmed as grade 1a and no further treatment required. I have had to give up my HRT though. I was home on the same day as the surgery, given the go ahead to drive by nine days and recovered well. It is easy to say all this after the event but I can only imagine how worried you are and I know I was too.

I'm here for a handhold or any info that I might be able to share .

I was going to say the same. It’s likely the ascites.

sorry to hear it’s cancer but it sounds like surgery is a pretty quick option. Hopefully you’ll speak to someone soon with a plan of action

Your NHS Trust may differ, but in mine, whenever I've had a CT scan, U/S or MRI the report has been available to my gynae-oncologist within a couple of days.

It's not even definitely cancer yet but obviously it's likely. Waiting for the gynae referral is agony, and it's only been a week!

The frustrating thing is that I haven't yet got a gynae-oncologist. The USS report was available next day but the CT can take up to a week, I was told.

Op, you’re going through an awful time of it but have they said a malignancy is looking likely, as a lesion can also be non malignant.

You said ‘USS results are in and it's uterine rather than ovarian’ which you must have realised would make it sound like you had a cancer diagnosis confirmed. Hmm.

Op, many years ago I had an MRI for gynae reasons and the person doing it said, we need to inject you with a contrast as we need to see where a lesion is originating. I almost died there and then and when I got back to my Dr she had to explain it was just a term used and didn’t mean what I thought it meant. And she was correct. My lesion was a fibroid.

I did eventually go on to get ovarian cancer but that was years later and it was found at stage 1A and I recall being told very clearly that until something is biopsied no one can really tell, or should tell a patient that something is or isn’t cancer.

yes there’s a possibility your lesion could be malignant but I’m not sure how they can say at this stage that it’s likely.

I have a history of large (now degenerating) uterine fibroids and endometrial hyperplasia with polyp formation.

They had always been described as fibroids. But in 2022, I had another U/S scan following several episodes of very heavy post menopausal bleeding and one of them was reported as a large, very vascular mass, highly suspicious for uterine leiomyosarcoma. I was put on the 2 week referral path and booked in for a CT scan and MRI.

The MRI report stated that the "vascular mass" had characteristics more likely to be a fibroid rather than a leiomyosarcoma. (It can be difficult to distinguish a benign, large vascular fibroid from a uterine sarcoma but they can sometimes be differentiated via MRI.)

My gynae-oncologist was happy for me not to proceed with the full hysterectomy via vertical incision that we had discussed at my initial appointment. He discussed my case at the next MDT meeting and the multidisciplinary team agreed they could support conservative management.

So yes, terms such as "lesion" and "mass" and "suspicious mass" don't always turn out to be a malignancy and there can be other options apart from hysterectomy.