Questions after scan results

[Tallulah55]

I have just been told my cancer has returned this time to my liver mainly. I wasn’t aware my ca 125 levels had increased from 36 end September to 350 recently. I had always been told my bloods were good and didn’t question further.

When I shared symptoms earlier this month of cramping etc my oncologist ordered a scan.

If my levels were rising like this shouldn’t something have been done before?

[Goodgirl98]

Sorry to hear about it. Really sucks you were not made aware of rising ca125 levels. I am not sure how it works there; in India, the blood reports are sent to the patient and we in turn take it to the doctor during the appointment. Any which ways, if your doctor or team was aware 6 months back, you should have been alerted about the rise and maybe a plan put in place on when to take more tests like scan etc. currently did you do a scan to understand where it has recurred. Was it a PETCT scan which shows the most accurate picture? Please look into this and hope you will have a treatment plan soon.

[SopSinger]

Many doctors don't treat rising CA125 unless there are symptoms - the thought being that if you are not unwell, it's pointless making you feel worse, and chemo may become less effective if you have too much of it. However, you should have been told of the rise, and had a scan earlier so it could have been watched. Make sure you ask questions in future about bloods, any other test results, and what the plan is if there is a change. Sending hugs!

[Leniko in reply to SopSinger]

My CA125 is very accurate re whether something is brewing again. If I see a jump, I Demand a scan.

[SuffolkJen]

So sorry you have had this news. You should have definitely have been made aware of your rising CA125.

When I have check ups the first thing my consultant tells me is the result of my latest CA125 but if she didn’t it would be the first thing I’d ask her, so you need to find out when it started rising and why you were told your bloods were good?! It’s not good enough

I hope you get some answers asap xx Jen

[Leniko in reply to SuffolkJen]

Agree. 350 is in no way considered “good”! 🙄

[wendydee]

I’m sorry that you’ve had this news. I hope you’ll get a quick appointment to discuss your treatment options. There’s a lot they can do and it sounds as if the levels have only recently started to rise? Maybe your CNS would be able to tell you when your case is going to be discussed at the Multi Disciplinary Team meeting (MDT). They’ll be able to tell you about the next steps for you after the MDT. I always asked about my CA125 levels but one consultant refused to say what they were…he just said all was well.

All the best for some reassuring answers.

Wendy xx

[Leniko in reply to wendydee]

It’s your blood marker and your Right To know. That consultant should be canned.

[wendydee in reply to Leniko]

I know! I put in a complaint and he was leaving anyway……it was about 20 years ago, too. Some older surgeon’s attitudes were quite different back then.

[Leniko]

that’s ridiculous! Most hospitals have your records on a portal that you can access to look at CA and blood markers. Can you ask? There’s no excuse from you doc to not have notified you regarding the huge jump in your levels. Time is of the essence in these situations. I’m not litigious, but this sounds like malpractice.

[Saintgermain]

My CA125 went from 15 to 500 last August my Onc immediately ordered a CT Scan, Pet Scan and Biopsy which confirmed recurrence my Onc preferred to not do a watch and wait I started 6 Carbo/Taxol/Keytruda in September by that time as the tests delayed starting treatment it was at 915 Pet Scan now clear at present NED I'm in the states.