CA125 rising

[Mary]

Feeling scared! I was diagnosed with OC Stage 1c (grade 3 cells) last September. Following surgery and chemotherapy I went into remission in February. I had a routine CA125 test in late May, which was found to be at 9 but further tests in late July and early August have shown an increase to 27 and 38 respectively. Not sure what to think (but fear the worst). Any thoughts would be appreciated.

[Hidden]

It looks like things are not going too well I must admit. Your doctor is obviously on top of the situation as you have had two blood test quite close together. If it continues to rise I've no doubt he will arrange a CT scan to see what is happening. Stay calm and take each day as it comes as there is nothing much you can do yourself. Here's hoping it is just a hiccup.

Good luck

[wendydee]

As the previous message says, it sounds as if your team are looking after you well. I know your CA125 is rising, which is scary, but 38 is only just over the normal range and the test isn't 100% reliable, other things can affect the reading. A scan would show more detail, hope you don't have to wait for long to have one and then you can take on board what the next stage of your treatment may be. Take things easy while you're waiting and treat yourself to whatever you fancy, it's time to try diversion tactics! I hope you know what's going on soon.

Wendy xx

[Joelle in reply to wendydee]

Wendy,

Just wanted to say I think this is a great answer to the question!

All the best,

Joelle

[Mary in reply to wendydee]

Thanks Wendy. Not sure what else can raise the CA125 but sincerely hope it's a blip. Am trying diversion tactics which does help but the awfulness can just hit you and be a bit overwhelming.

[wendydee in reply to Mary]

Do you have to wait for long for your next appointment? I know that a phone call to your specialist nurse (CNS) can oftn hurry things along in my local hospital, so may be worth a try. You need to know what's going on for your peace of mind! If the CNS isn't available, try your oncologist's secretary. It may be time to grab the bull by the horns and get assertive! Good Luck

Wendy xx

[Mary in reply to wendydee]

I have an appointment with my Oncologist next Monday (22nd) so, in theory, not so long to wait - just seems like an eternity. Many thanks for your support.

[nikki1990 in reply to wendydee]

Hi, I want to wish the best of luck. I don't know too much about anything yet as I've only found out about things in the last 3 weeks really.. My ca125 came back as 197, I'm not sure how bad that is but the doctors keep saying its slightly raised so that to me sounded like it wasn't too bad, but hearing you say yours is 38 has worried me quite a lot. I'm 20 years old, I havnt found anyone my age going through this so I'm not sure if anyone really wants to speak to me much as I'm a lot younger then everyone else. I've got my operation on the 26th to try and remove what they can of my tumor on my left ovary. I havnt been told too much, my surgeon seemed a bit vague about it all. I'm not sure what stage I'm at yet.. I wish you all the best and keep us informed about how everything is x

[Hidden]

Hello Mary

I was asked if I was allergic to anything the other day when I went for my three monthly checkup. My CA125 had more than doubled again to 154. It has slowly been going up from 9 to 27 then 59 and now 154. I am going to have a scan next week. I have been having some more aches and pains than normal so unfortunately think it is more than likely my oc returning. I do have gall stones but I don't get a lot of pain from that. Anyway I shall find out shortly. Glad you are being monitored so closely and that is very important.

Best wishes

[Hidden]

Hello Mary,

I would echo the advise of the others, except to say that I have recently been thru' the same experience as you. I was diagnosed aged 55 with stage3oc grade3 cells. I don't know your age, but you are lucky to have been caught at stage 1.

I am now 57 and still disease free, touch wood. But my recent scare was this: my ca125 was taken literally the morning of the day I had begun to recover from heat stroke. My CA125 which usually wobbles around 5-7, has tripled to 17, but my C reactive protein, which is another measure of abdominal inflammation, had skyrocketed to 197, that's from a usual value of 1-2. My oncologist did another test when he explained this result to me, which alarmed both of us. I went away for an hour, to give him a chance to take another blood test, get the CA125 and full blood count - the C reative protein, etc., thru' the lab, and back to him. I returned to find him saying, OK, the panic is over - the CA125 had fallen to 12, whilst the C reative protein was back to 2.

He suggested another test to confirm his assumption - that the CA125 had returned to normal and so had the CRP, but alas I have to tell you that I then contracted one of my two or three annual urinary tract infections, this time a particularly nasty one. The out of hours GP had to be called by my husband at 3am, because I was constantly vomiting, the GP and my husband reappeared at 4am, when I had fallen asleep again, to see two dark male figures appear at my bedroom door!!! I was so completely out of it I assumed, well let's not even go there, but the taller one approached me saying loudly 'I am a doctor...' whilst my husband put on the light in our bedroom and I realised that it actually was him. I then gave my husband dog's abuse for constantly turning up with the wrong bottle of water, etc., whilst I explainded to the GP that I was zonked out on painkillers (for orthopaedic reasons, which are irrelevant to cancer, but revelant to me, because I got a lower spine injury, and a bad right leg, and also two knees that need sorted out, because I once skied, I still free-dive, and I also walk my dogs, every day that I can...) and muscle relaxants, diazepam, for the same reason. I thus could not provide the specimen that GP needed, etc.. To cut a long story short, I am now on antibiotics until next Friday for the UTI, so I cannot see my oncologist. He has agreed to check the FBC my GP will order after the UTI, and then he will see me one to two weeks later. Hopefully because I will by then have passed the critical 18 months after my initial chemo, my problems will be resolved, but if not I will follow the advice of my oncologist, who I trust absolutely.

Without knowing anymore about you, I can only suggest that if you are not happy with your current oncologist, you ask your GP for an urgent referral to the nearest specialist cancer care centre - the Ovacome nurses will help you with this, call them on their number which is on the Ovacome website. I would merely suggest that if your pattern of CA125 elevation continues, you need to start treatment - whatever that may be - sooner rather than later.

Good luck!

chrystynh - forgive me for any literals, unfortunately I am dyslexic...