Raised CA125 and bleeding

[Pinkpoppy]

Hi ladies

I hope it’s ok for me to post as I don’t have a diagnosis.

I’m 45 yrs and have had out of the blue vaginal bleeding for the last month. It started quite lightly but now for the last 1.5 weeks has been very very heavy (flooding through tampons and pads every 2 hours). I’ve also had some back ache. My Dr did swabs which were negative and ordered a blood test and trans vaginal scan. I had the blood test before coming away on a 2 week holiday and on Monday I had a phone call to say my CA125 was 48. My Dr wanted me to have the scan this week rather than at the end of August which was the date it was originally booked for. I am trying not to panic but have to wait until I return from holiday for the scan which will be the day after I get back. I have been taking transamic acid to try to slow down the blood loss which has helped a bit but I will soon run out of this.

What do you ladies think, do I have a reason to worry ? Has anyone else had a similar experience ?

Many thanks in advance x

[DSK-C SHARE Volunteer]

Eight years ago I had unexplained vaginal bleeding. Turned out I was diagnosed with Fallopian tube cancer which is basically ovarian cancer ( many ovarian cancers start in the Fallopian tubes). Since your CA125 is elevated you may want to ask about a CT scan. Also, i would make an appointment with a gynecological oncologist. This specialist is very important especially for any surgery you have. Since you are already away on holiday, I would schedule all these appointments ASAP upon your return. Good luck and keep us posted!

[Pinkpoppy in reply to DSK-C]

Thankyou for replying.

Sorry if this is too personal and you don’t need to answer but wondered how heavy your bleeding was ?

It’s a little different with consultations in the UK because my ultrasound scan will be NHS funded. I will have to look into how to find a private gynaecology consultant who would do a CT scan.

I keep swaying between wondering if I’m over-reacting and feeling really panicky.

Did you have any other symptoms ? Sometimes when lying on my stomach I think I can feel a lump near my right hip bone but cannot seem to find it when on my back.

Leanne x

[DSK-C SHARE Volunteer in reply to Pinkpoppy]

My bleeding was initially heavy but tapered to only spotting at times. I had no other symptoms. I was bleeding for 2 1/2 months until I had a hysterectomy because they could not find a source for the bleeding I was post menopausal at the time. I also had a long history of fibroids. I was also tested for uterine cancer. My transvaginal sonogram didn’t show any tumor. I had a CT scan and CA125 test after my surgery. I was diagnosed with high grade serous stage 3C Fallopian tube cancer. Feel free to ask any other questions. Again, it is critical to find a gynecological oncologist not a regular gynecologist. The gyn onc has extra training to deal with cancer, if that is what it turns out to be.

[Zand]

Please do take this seriously. I also had unexplained bleeding, and it took over a year for me to be diagnosed; stage3b ovarian cancer. They discovered the source of the bleeding was fibroids in the uterus, and although they didn’t find cancer in my uterus, it was suggested that there was a connection. Please advocate very strongly for the best care available. For me, the cancer was discovered with MRI following a transvaginal ultrasound which showed the tumours. I wish I had had a hysterectomy when I first started bleeding. It might have prevented the cancer, or at least prevented it from spreading to other organs.

[Pinkpoppy in reply to Zand]

Ohhh Zand it sounds like you’ve been through a hell of a time. Thanks for taking the time to reply.

Does bleeding tend to happen with ovarian tumours ?

How are things for you now ?

Leanne x

[Zand in reply to Pinkpoppy]

As far as I know one of the symptoms of ovarian cancer may be vaginal bleeding. I was diagnosed 3 years ago, had surgery and chemo and I’m now on a drug known as a parp inhibitor which hopefully will suppress the growth of tumours. Im doing really well and I work at staying positive. I have scans every 3 months and monthly blood tests. Stay strong and let us know how you’re doing.

[Pinkpoppy in reply to Zand]

That’s really good to hear. Thanks for sharing your story. I certainly will come back to keep you all updated.

Leanne x

[Marigold-Jane]

Hi,

I don’t like to worry you, but you must have a CT scan ASAP. (I’m in the UK.)

I had exactly the same daily bleeding for several months (October 2019 to March 2020) - the only symptom for quite a while, and I didn’t feel unwell. Despite my GP putting me forward to see the Consultant Gynaecologist twice, I was told by the Gynaecologist that it was nothing ‘sinister’ which falsely reassured me. She asked me no questions and even looked sceptical on my second visit that the bleeding had continued. Following this second visit, I had a hysteroscopy under General Anaesthetic, and she agreed that there was a lot of blood and that the cause was vaginal atrophy. I was prescribed Oestrogen pessaries for several weeks, but these had no effect whatsoever, on the bleeding.

I’m very fortunate that my daughter is a GP and wasn’t happy with this diagnosis so she came back to my GP with me, and did all the talking! She had already asked me relevant questions - did I have to urinate more frequently and more urgently, and did I often feel bloated? (all symptoms of Ovarian cancer, my daughter told me), but no one else had asked me these questions - not even the Gynaecologist. I answered ‘ Yes’ to these questions, but hadn’t realised these symptoms were relevant.

My daughter told my GP that I needed a CA125 blood test and a CT scan straight away. With her insistence, these were arranged very quickly. My CA 125 was raised and the scan showed a mass of 16cm. x 12cm. x 10cm. on my right ovary. Within 4 days of the scan result, I’d been admitted to hospital and had a full abdominal hysterectomy. The mass turned out to be Ovarian cancer - Stage Ic.

I started a course of chemotherapy 6 weeks after the hysterectomy and am now midway through.

Please insist on the CT scan strsight away. Hopefully you won’t have the resultI had, but if it is cancer, the earlier it is caught, the better.

I really hope that yours is something else. Good luck.

[Pinkpoppy]

Thanks for sharing Marigold -Jane

Because of the fantastic advice I’ve had from you ladies I’ve located a specialist (gyne oncologist) at my local hospital who I will contact on my return and arrange to see privately. I’ll request a CT scan to be done ASAP.

I’m actually bleeding even more now so I’m contemplating going to A&E whilst on holiday. My iron levels were quite low before the bleeding so I dread to think what they are now.

Thanks again for everyone who has taken the time to offer support and advice. It’s very much appreciated

Leanne x

[Marigold-Jane in reply to Pinkpoppy]

I think you’re very wise to see a Gynae-oncologist. I do hope that it is something less serious.

Best wishes,

Maggie