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.

Hi @Ohjoyohbliss
I have sarcoma cancer and have just had my 3 monthly CT. Today, I asked the oncologist how I would know if I had a blood clot. She said the reporter would phone me IMMEDIATELY. My point being, SOMEONE has the ability to read and report your results, far quicker than they make out. Be assertive and consistent. With a suspected cancer, they should be moving fast!

I will be rooting for you @Ohjoyohbliss that it ISNT cancer 🌺🌷

Agree 10000%!!

The only thing I can think of, is that they are now having the MDT meeting to discuss your case, so that when you meet them, they will be able to give you results and a treatment plan ( if required).

Just to add, my CA125 was always normal, yet I had ovarian cancer. The CA125 is not a reliable diagnostic tool.

I’m pessimistic by nature so I understand where you’re coming from. I’m relieved the consultant is taking your pain seriously and is ordering extra tests, but I think they should have made sure they had the CT scan results before you arrived for your appointment.

I hope you get your answers very soon and it’s easily treatable and you feel much better xx

Nope that is incorrect. Mine was 42 on diagnosis of, yep you guessed it, ovarian cancer!

A few people seem to be posting without having read all my posts. Things have moved on since the initial blood test giving the suspicion of ovarian cancer. I had a pelvic ultrasound which revealed my ovaries are OK. My endometrium is slightly thickened but not majorly so will not be investigated further unless no other cause for my symptoms is found. (I mentioned a lesion previously; this was due to my GP and I misreading the report. The consultant explained it's nothing.)

The severe and worsening pain, swelling, weight loss and FIT and blood tests do indicate something serious going on. It's probably cancer but the location remains to be identified. This is why the CT scan is so important.

Thanks to all those urging me to chase the CT report. I will try to do this tomorrow.

@Toarrie I’m so sorry to hear that , hope your doing ok .. I was told by a consultant that the number had to be in the 1000s ..

@Jennywren8 I hope you get your answers very soon.

Wishing you strength op. Battling the system is very draining. Especially when you feel so ill, tired and worried. I feel for you

Is the CT scan sitting on a desk waiting to be looked at? This was the delay for my mums mri

I’m sorry but that’s just not true especially when it comes to something like Mucinous Ovarian Cancer which is what I had with a CA125 level of 53.

I understand people trying to console a person by commenting on their CA125 levels but it’s a very common misbelief that needs to be put to rest.

Toarrie - when I read of consultants telling a patient it’s not ovarian cancer because the numbers have to be in the 000’s I’m so glad they weren’t my consultant. I can recall being consoled by my we number and saying to my consultant/surgeon (she is a gynae oncologist) oh what a relief I probably don’t have cancer and her very gently telling me, even at 53 we just won’t know till we remove the cyst and biopsy it.

People just don’t understand what an absolute body blow it must be to a person when they’ve convinced themselves it’s not cancer because ‘my CA125 wasn’t in the 000’s’, only to then be told ‘it’s cancer’.

Just to acknowledge your results Jenny and to say I’m pleased you are a bit closer to finding out what’s going on with you. 😊

Well we don’t know that.
Hopefully the medics are currently making are all looking at the results, ready to feed back to OP soon.

Ca-125 is an unreliable diagnostic test, it far better used as a baseline for any treatment. Mine is in the 80s and has been for many many years. Initially I had all the investigations very throughly (many scans, other CA tests etc) and no cause found. Gynae said that was just me - always some outliers.

OP @OhjoyohblissIm sorry you haven’t got an answer yet. I’m surprised (and cross on your behalf) the Drs have said it’s likely cancer but they don’t know where/source, that’s not at all helpful to you and only causes worry. How can they think it’s “likely” without evidence! There’s are a 1000 other things that are likely, some serious, others not so and nearly all treatable or manageable. Good luck in getting a clear diagnosis which puts your mind at rest.

Sorry OP, that made zero sense!
What I meant was, that I hope all the results are in and the medics (if necessary) are formulating a plan of action for you.

From my experience, the medical professionals are incredibly careful about saying anything about it being ‘cancer’ until they get the result of a biopsy. Perhaps others have had different experiences. My ultrasound was ‘suspicious of cancer,’ however on the two week wait pathway 90% of patients have it ruled out, as mine was after a hysteroscopy procedure when a polyp was removed and a biopsy on it carried out. They needed to get it into a lab and the cells looked at properly in histology in order to categorically say one way or the other.

DH was told from the outset that his blood tests, symptoms and scans meant it was almost certainly cancer. He had to wait weeks for them to actually be able to get biopsy results as they kept coming back as inconclusive (3 attempts at our local hospital then a final successful attempt at the nearest big teaching hospital).

@JellyBeanSpring25 I agree. Also, people can be walking around cancer free but still have a raised CA125 level even because of run of the mill inflammation in their body.

@fluffythecat1 From my experience, the medical professionals are incredibly careful about saying anything about it being ‘cancer’ until they get the result of a biopsy

Yes. And so they should be. I can recall one of the junior Drs I saw during my investigations telling me she wasn’t worried about my CA125 level, it was 53, as it could be easily explained away - yet the consultant I saw next said, only a biopsy will tell us. And she was right - I had ovarian cancer that was hiding in an almost 6kg ovarian cyst.

Most of the people "walking around cancer free but still have a raised CA125 level even because of run of the mill inflammation in their body" don't have my other symptoms, especially over a stone loss of weight without trying.

As i said in an earlier post, I don't think the consultant ever mentioned the c word but he did order more tumour marker blood tests and talk about finding the site, possibly necessitating another CT scan, MDT team... I may be putting two and two together and getting five but I don't think so.

Joy, I think you’ve got the wrong end of the stick regarding my post. It’s the way threads go at times - not everything in them is written with the OP in mind

OP what a summer you're having, I'm sorry. This kind of prevarication by doctors (refusing to say the 'c' word while clearly checking for cancer) is understandable, but all the same maddening. I just hope they find whatever is causing your symptoms very soon and appropriate treatment kicks in promptly.

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.

That’s good news - no evidence of cancer, hope your mind is eased. As I said earlier, there are 100s of things that could be causing your symptoms; Drs like to rule out the worst first. Hopefully you’ll get an answer soon.