Extra blood tests

[Buddysmum124]

Hi everyone hoping everyone is keeping well I'm still no further forward saw a consultant who says he thinks nothing looks sinister takes blood tests I then get a letter for another ca125 test AFP test prefnancy hormones etc something for my liver something for my pancreas are these all standard tests?? Is this my consultant trying to rule stuff out?? My first ca125 was 90 and I have cysts on both sides! Spiralling again what a rollercoaster, endometriosis and adenmyosis are also in the mix I just hate not knowing!!

[Cumbrianlass5]

Yes, the not knowing and waiting for results and consultations is the worst. So glad they are following up all the checks possible. That is good. Excellent in fact. The sooner they either rule out any major problems, or find a problem and start treatment, the better. Try to stay strong and distract yourself with activities until the results are through. Hoping all is fine with you. Love and hugs and all very best wishes.

[Buddysmum124 in reply to Cumbrianlass5]

Thanks very much xxx

[Buddysmum124 in reply to Cumbrianlass5]

How did you discover you had oc ? What tests did you have?

[Cumbrianlass5 in reply to Buddysmum124]

I had a pain like kidney stones (which I have had previously) but no other symptoms except maybe bowels a bit erratic at times. GP did bloods which showed raised CA125, and she followed this up very quickly with ultrasound and ct scan. Then everything went wrong because the gynae department at the hospital said "the ovaries are enlarged but there are no areas of concern". So the hospital spent 12 weeks going colonoscopy and gastroscopy with biopsies to try to find the source of the cancer, and then eventually deep tissue ct guided biopsies (which were incredibly painful) which showed it had been ovarian cancer all along!

The oncology department started chemo very quickly after that. Whether those wasted 12 weeks resulted in it being inoperable I will never know, but I have lost all faith in the gynae dept.

Any way, onwards and upwards is my motto. We have to keep fighting this b.....d disease (and sometimes the health system too). Love and hugs x

[delia2]

I agree it’s good they’re checking all possibilities. Is there any hope of a CT or PET scan? The latter would identify cancer by its metabolic uptake. Xx

[Buddysmum124 in reply to delia2]

No talk of a scan yet I have had an mri via a private consultant but haven't heard from him either feel like I'm losing the plot!!

[Mumsie13 in reply to Buddysmum124]

How long have you been waiting for results from private consultant? One assumes he will be quicker than NHS who usually take anything up to two weeks.🤔

[Buddysmum124 in reply to Mumsie13]

I had the scan on Thursday I'm just very impatient I'm meant to be having a womb biopsy next Friday so didn't know if I needed to wait until then??

[Mumsie13 in reply to Buddysmum124]

Quite possibly if your private consultant is doing the biopsy. Quite a lot happening - I'm sure they'll find out what's going on soon. It is difficult not to be impatient. I have to reign myself in sometimes when I want answers and want them now!!😏

[Buddysmum124 in reply to Mumsie13]

I'm exactly the same!! Lol x

[Mumsie13]

It does rather look like your consultant is trying to rule out every eventuality. I would have thought by this stage though that a CT scan is indicated or even an MRI or PET scan. Don't be put off. You are doing well with this process which can be very frustrating. You might need to insist on a scan (other than U/S). The waiting is horrible but hopefully they will come to some sort of conclusion soon. 🤗 Jackie

[Buddysmum124 in reply to Mumsie13]

Thanks very much x

[Buddysmum124 in reply to Mumsie13]

How were you diagnosed if you don't mind me asking? Think understanding the process helps x

[Mumsie13]

After getting suspicious that something was going on with me (took a while for the penny to drop), I went to see my GP. She was pretty clued up as I have a history of large ovarian cysts and already had one investigation which didn't find cancer at the time. CA125 came back at 130 and U/S scan showed a suspicious pelvic mass of indeterminate size. She didn't hang around and fast tracked me to see gynaecologist, while getting me an urgent CT scan, within two weeks. Gynaecologist said straight away that he thought we were dealing with OC and referred me to a specialist in cancer centre at another hospital -urgent appointment. We had a long chat and he recommended surgery asap which I agreed to. Whole process took about 7 weeks. Interestingly they couldn't actually confirm ovarian cancer until after surgery when they told me what type of OC it was and what stage I had been at. So despite three scans and several blood tests they weren't actually sure until after they opened me up. All this took place at the end of 2017. Probably more than you wanted to know 😏 but there you have it.

[Buddysmum124 in reply to Mumsie13]

Interesting to hear mine seems so slow my nhs consultant said he didn't think it was anything sinister from the ultra sound do you think they can tell?? They've done more blood tests it's just all such a worry maybe I should speak to my GP again??

[delia2 in reply to Buddysmum124]

Hi. Technically speaking they can’t diagnose OC without surgery or biopsy. It’s the pathologist who gives the definite diagnosis. They can suspect it from scans together with CA 125.

[Buddysmum124]

Ps how are you now? Hoping you are keeping well and thanks for replying too me xxx

[Mumsie13 in reply to Buddysmum124]

Thanks for asking. I feel quite well in myself. I was in remission until March 2020 when I had a recurrence. Chemo shrunk the cancer significantly and it has been stable until recent scan showed it's on the move again. I've got a face to face with my oncologist next week after they have had an MDT meeting. Looks like more treatment which is a bit disappointing as I feel so well at the moment. Oh well onwards and upwards with this roller coaster journey. You keep well and stay safe. Jackie.

[Mumsie13]

To be honest a lot of people on here have said the ultra sound did not pick up the cancer and sometimes not even the CT scan. OC is a tricky customer and not easy to diagnose. I suppose I was lucky, if you can call it that, my mass was in a rather obvious place. I suppose all any of us can do is stick with it and hope that it's something easier to treat. I don't know how long it is since you first saw your GP but I hope you don't have to wait too much longer 🤗 Jackie x

[Buddysmum124 in reply to Mumsie13]

End of may was my US then 7th of june was my first blood test saw consultant on the 18th of june then got a letter for more blood test! Saw a private consultant seperate and had an MRI last week!! I just don't know what to think x

[Mumsie13]

I assume you had to wait a little while to have your blood tests but it looks like you should be receiving results from everyone quite soon. If in a while you think things have gone on too long you can always get in touch with the various consultants secretaries. I think two to three weeks is long enough to wait so maybe a reminder that you would like some results wouldn't come amiss.

[Buddysmum124 in reply to Mumsie13]

I will do this thanks xxx