CA125 Bloods

[juneann]

Hi everyone, I am so distracted by fear all day everyday until I get to the hospital qnd get some answers.

Aged 55 and suffered incredibly heavy periods although always regular for the last five years and lost horrendous amounts of clots, enough to keep me off my feet and use children's nappies with large tampons.

Exactly two years ago I had a cyst removed in gynae and a fibroid was left I believe. My tumour marker (CA125) was recorded as 56 at some point, either before or after and nothing more was said. I continued with no change to my periods and just rode the storm.

Following a visit to a GP last week she referred me for an internal ultrasound, I have an ovarian cyst a 34mm fibroid (I'm fairly sure it was mm and not cm) and something about vascular in the wall of my womb...blood vessels? My CA125 came back at 106 and I can't stop thinking about it and feeling very low.

I'm due in hospital on March 26th for a hysteroscopy (camera) although I think my period is about to start in the next couple of days. Regular periods since having my son at 39, on and off before then from aged 15. December's was four days late, January's ten days late and at present seventeen days late but can tell I'm due.

I seem to remember my fibroid was only discovered by chance during a very sketchy MRI for an herniated disc. Had good smears throughout except for maybe thirty years ago when I had CIN1, CIN2, CIN3 followed by a coloscopy and then discharged. Incidentally I do have what is considered a benign cyst by a node in my neck which when drained a couple of years back was clear and appeared to disappear but returned within two weeks.

When I read back over my history I find it much more frightening than before.

Any experience out there or reassuring words?

X

[girli1111]

Try not to panic about ca125, mine was up to 473 at one point with a ,fat containing mass’ on scans, and it was taken seriously, but was all endo related, NOT cancer x

[juneann in reply to girli1111]

Thank you for your reply girli1969. At 55 I feel so weak not holding it together, it doesn't help that after all these years I have developed a real phobia around the speculum, making it impossible for me to have my last smear test where I just cried after the third failed attempt.

[girli1111 in reply to juneann]

You’re not weak, just try and be kind to yourself. I’m 48 and in the last three years I have been to some very dark corners with medical scares. I’m now in surgical menopause as both ovaries have been removed, I’ve had to have breast ducts removed because of ‘abnormal cells’ and I’ve had a DVT as a result of a large ovarian cyst constricting a vein. I thought I was out of the woods until 3 months into surgical menopause my rheumatoid arthritis kicked into overdrive! Have you been able to discuss your phobia with the nurse/doctor? Perhaps you might be able to take a sedative? It really is so important x. Good luck x

[juneann in reply to girli1111]

Wow girli1969 you are certainly being challenged, I wish you well.

just hope I get an understanding gynae on the day of my hysteroscopy otherwise I will be a blubbering mess. After seventeen days late I finally came on today, 55 and still having periods and unbelieveably heavy. I shall try to be obedient and take advice from my GP which means me taking tranexamic acid to lighten the flow. I have started to have longer periods but I really need this finished completely by a week on Monday for the hospital. I really don't want anything delayed as I have not been monitored these last two years, nobody asked me to pop back after a cyst was removed last time even though they already knew about the fibroid and elevated CA125 which is now twice as high.

Sorry there I go again, on and on and on.

Take care.

X

[girli1111 in reply to juneann]

Hope you get sorted soon, and dont worry about still having your period on surgery date... they’ve seen it all before!

[juneann in reply to girli1111]

Girli1969 I wouldn't have thought that the gynae would be able to see anything with the camera during a period surely? Maybe I'll give them a call on Monday and have a chat.

Thanks again.

[helixhelix]

And mine was due to fibroids... I'm trying to remember the term used, but there were also comments about my uterine wall, but merely descriptive. Your uterus is a vascular organ, i.e. well supplied with blood, so it was something about vascular masses which I think just meant fibroids buried in my uterus wall.

Anyway, after 18 months of investigations, pain, bleeding and so on I had polyps and 3 fibroids removed last November and all's now well. They have warned me that since they couldn't remove everything in the wall of the uterus they might come back, so I will just enjoy being pain free while it lasts.

So the most likely right now is that the results are due to the benign growths you have, so do try to focus on that. I know it's impossible to get the fear out of your mind, but avoid doctor Google and maybe think about planning other positive things for spring.

[juneann in reply to helixhelix]

Wise words HelixHelix, thank you so much for ther reassuarnace. May you continue pain free X

[Titchyj]

Hi Girlie1969, I’m just going through something similar although my CA125 was in normal range. Been having dragging, pressure and pain both pelvis and abdomen, lower back pain radiating to thighs and groin and very bloated abdomen. I can’t stop peeing either, Doc couldn't put smallest speculum in due to my Lichen Sclerosus flare. Having Pelvis and Abdomen scan on Wednesday . I do hope yours is sorted soon.

Will be glad to have results so whatever it is can be treated, so very tired at the moment and pains in stomach, back and legs are really pulling me down on top of RD, Fibro, Diabetes and all the rest.

Good luck with your tests.

Jan

[juneann in reply to Titchyj]

It all certainly keeps us oin our toes Titchj, take care. X

[girli1111 in reply to Titchyj]

Your symptoms sound a bit like endometriosis. Ask to see an endo specialist if you can.

[Titchyj]

I’m 61, not sure I’m the right age for this, thought it was women of child bearing age! I’ve never had children. Might be wrong.

Jan

[juneann]

Hi Titchyj, Sorry I didn't understand your reply. Right age for what? Women of child bearing age?