More tests, more waiting still no plan

[Booty42]

HiI had my initial gynae app yesterday. I was fast tracked to gynae on a 2ww with a 6cm suspected endometrioma with solid mass inside and a high CA125.

I thought my app was to discuss a plan for surgery to remove cyst and options for effected ovary and infiltrated uterus.

The gynae consultant instead done a womb biopsy then and there (wasn't expecting that) and she sent me down for urgent bloods (CA19-9). A few weeks ago I had a CA125 which was 141. The consultant also said I need a hysteroscopy, which I'll recieve an app for in next few days and they are discussing my file in an MDT meeting on Tuesday and I will need a CT scan.

I asked why the extra bloods, her response was to try and work out what type of cyst it is even though both ultrasounds transvaginal suspected endometrioma.

I asked about endometriosis as both sonographers told me i likely have at least stage 3, her response was that there is no definite diagnosis for that yet and they need to build a full picture to come up with a plan and most likely looking at a hysterectomy.

My husband asked what time scale we are looking at for surgery and she said I'm on a fast track treatment pathway and we are looking at weeks rather than months.

I'm 46 and everything seems to be pointing towards Cancer, my world is a bit scary at the moment with a lot of uncertainty and still no answers just more investigation.

[Nica68]

Hi 🙂As daft as it may sound try not to worry !

Ive had a very similar experience to you i was fast tracked to gyne and was told that i had a 10cm cyst on my ovary. I also had a womb biopsy taken and bloods with a high ca125.

(I was later told that endo can cause high levels)

A couple of weeks later i was told that they were treating my case as cancer . But i would need further mri scans. Fast forward 6 months 3 blood tests and 4 mri scans later the cancer hasnt been brought up since instead Ive been referred to a endo specialist with endo (stage 4) to hopefully come up with a plan to tackle it .

So i know how daunting it can be not knowing exactly whats happening especially when things may point to one outcome but take one day at a time .

[Booty42 in reply to Nica68]

Thanks for your reply. This sounds positive, I'm hoping I won't have to wait too long for some answers. I now have my hyseroscopy booked in for 17th, hospital phoned me earlier to book so that will be another investigation out if the way and a step closer to knowing and I'm hoping it will be the same consultant so she can tell me my CA19-9 bt results and womb biopsy results from yesterday.

It's been mentally and physically draining but I'm concentrating on keeping busy.

I hope they see you soon and come up with a plan to get you sorted out.

[Stollbats]

I had a similar experience but I didn't have a high CA125, they were concerned because the cysts were growing so quick. I had quite a few blood tests and mri's done. It does all happen so quick but luckily it was not cancer, I've had surgery and been diagnosed with stage 4 endometriosis. Try not to worry to much, it's best to get all the tests done so they know what they are looking at and can give you the best treatment. It's definitely a roller coaster of emotions.

[Booty42 in reply to Stollbats]

Thanks for your reply. I keep trying to be optimistic but every time I think it won't be cancer it will be something else, they hit me with another test to 'rule out cancer'.I carnt change what the diagnosis will be so just need to deal with the outcome either way anyway.

Thanks again

[Nadine2]

hi, I went through a similar thing in my 30s and it was scary. Just to try to reassure you, I had a 10cm cyst and my bloods came out high so was rushed through as cancer risk ( no one even mentioned endo and I can no diagnosis at that time) . But after surgery, it was confirmed that it was not cancer but endo , causing the high blood results. Sounds like the same will happen to you. Those few months were awful, I had two small children at the time, so know how you feel. Try not to torment yourself. Best wishes to you.

[Booty42 in reply to Nadine2]

Thanks for your reply.I'm seeing my consultant on Wednesday for hysteroscopy, hopefully she will have a clearer picture then as she should have my CA19-9 results and biopsy results from this week.

I had a CA125 done 2 years ago when I had a removal of a growth/polyp from my womb and it was only 31 then, I think that's what is scary because my body would have been having inflammatory responses then to the growth but my CA125 was relatively normal but now its high so it paints a different picture in my mind.

Thanks again

[Nadine2]

just remember that endo raises the CA125 result. Stay strong x

[Booty42 in reply to Nadine2]

Thank-you, I'm trying x