Ca125 and Platelets high – worried
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4 posts since
5 Feb 2020
Hi.
Im 45 and have hypothyroidism. I recently went to the doctors thinking I might have IBS. I had been having constipation and diarrhoea etc and occasional blood in my stools. She felt my stomach, did a rectal exam and sent me for blood and stool tests. She did not seem too concerned.
I got my results back yesterday via a telephone appointment and she told me that my CA125 was high and that my Platelets were also raised. Both of which I have read can be indicative of ovarian cancer.
She has me booked in for an ultrasound scan in 2 weeks.
I am now fearing the worst and dreading my appointment.
Any advice?
110 posts since
10 Jul 2019
Hi Knicknack,
Thanks for posting, and I’m sorry you have been having problems with abdominal symptoms.
A CA125 result that is higher than normal does not always mean that someone has ovarian cancer. CA 125 can be high in many very normal or non-cancerous conditions (for example, pregnancy, menstruation, uterine fibroids, endometriosis and pelvic inflammatory disease). Also high platelets are not always necessarily a sign of cancer, they can be high in infection too.
It is incredibly difficult waiting to get tests/scans done and then waiting for results, to think of all sorts of scenarios. All symptoms can be related to a cancer and remember that the internet (if you you search it) is not a medical professional who can assess you and get a full overview of the situation.
If you need any more information or support you may find it helpful to talk things through with one of the nurses on our helpline.
The number is Freephone 0808 800 4040, 9 till 5, Mon to Fri.
Take care,
Sarah
4 posts since
5 Feb 2020
Hi
Thanks for your reply. I think what panicked me the most was the fact it is a pathway appointment. I went to the doctors expecting to be told I had IBS, now they are checking for something much more serious.
My appointment is on the 18th so I will have to wait and see
Nicky
4 posts since
5 Feb 2020
Just wanted to update and to ask your advice again…
The appointment/referral on the 18th Feb was awful. There was no scan booked for me only a consultant appointment. Not sure if my doctor had messed up or the hospital. The consultant was quite condescending and told me that I shouldn’t have come to see him without having a scan first … I told him that I had been told that was what the appointment was for, and that it was the only appointment I had been given.
Anyway he did an examination (felt my stomach etc) he sent me for further blood tests and requested an ultrasound scan. He told me he would see me again in 2 weeks. The blood tests were done on the 18th feb. They were for CEA CA125 CA153 CA199.
I had my ultrasound scan and an internal scan on the 28th feb. But since then I have heard nothing.
I tried ringing the consultants office last Tues and I was told that the cases get discussed on a Wednesday at an MDT meeting and that I will be contacted. Having heard nothing I called again today, this time I was told that the consultant has retired and that the clinic is full with no available appointments. When I asked what would happen now I was told again that it would be discussed on Wednesday and that I would be contacted. Apparently there was no meeting last week.
My worry is that I was on the 2 week urgent referral from the doctor due to my raised CA125. Now after nearly a month I am unable to get any answers or an appointment. I asked the nurse today if they could tell me if there was any concerns and she said she wasnt able to tell me and that I needed to call back after the MDT
I really dont know what to think or where to go from here. I hope that if anything was seriously wrong I would have been contacted however the nagging feeling at the back of my mind is that I whilst I am being passed around the problem could be getting worse.
Sorry to ramble on but I’m so worried that there is something wrong and no one is telling me anything.
912 posts since
5 Feb 2018
Hello and thanks for getting back in touch
I am sorry to hear about your situation and can appreciate all the delays, waiting and not knowing must be unsettling you.
I’m afraid no one on the forum is in a position to tell you any more than you already know. Try and hold your nerve for now as there is always a number of different reasons for symptoms or abnormal test results and not all will be as serious as cancer.
Because you don’t seem to be getting any answers from the departments you have contacted so far it may be worth considering contacting the hospital Patient and Advice Liason Service (PALS) department for advice. They should be able to look into the situation for you and get you some answers.
I really hope you know more soon but do get back in touch if you need to.
Best wishes
Naomi
4 posts since
5 Feb 2020
Thank you Naomi
UPDATE.
I got a call this afternoon from a nurse who told me that a consultant had looked at my scan and decided that it did not need to be discussed at the MDT. I asked her what happens next and she said the consultant would either write to me or call me. She couldnt tell me what was on the scans or the blood test results. So I’m not really any further forward as I only have her assumption of ‘I’m sure you will hear soon. Maybe next week?” to go on.
If I dont hear anything by Monday I think I will call PALS as I was told it was an urgent 2 week referral 6 weeks ago. Although no one can even confirm that I am no longer on the urgent referral pathway. But I assume I am not due to the lack of communication.
4 posts since
30 May 2019
Hi there,
I’m sorry to ask questions but I feel I am in a similar position, my last bloods done showed my platelets were at 580… which I believe is quite high. What were your platelets raised to? I also have symptoms of pelvic pain, abdominal bloating and stomach discomfort as well as lower back pain and awaiting a scan as I had a large mass removed last year along with a Fallopian tube.
I hope you are somewhat further along than you were and that things are okay for you.
Maddy x
208 posts since
25 Jan 2011
Hello Maddy
Thanks for posting. As this conversation was last active back in March you may not get a response from Nicky, but it is in the “Ask the nurse area” which means that one of us will respond to you. I notice that you posted a similar question on another conversation thread. As I mentioned on that one, high platelets can be caused by a number of conditions, usually some sort of inflammation or infection and are not necessarily a sign of cancer.
The best think to do will be to have a chat with your doctor and they can see if any further tests need doing. Its only really a doctor that can diagnose you. You might find that trying to check out what happened to other people on a cancer forum like this one makes you more anxious rather than less and it wont really shed any light on what might be causing your high platelets.
I wasn’t sure if you knew we had a helpline you can call, please do call us if you want to talk things through the number to ring if freephone 0808 800 4040 and we are open 9 to 5 Monday to Friday
I hope that helps
Martin
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