Hi

I'm ccurrently in the investigation stage for suspected ovarian cancer. My CA125 came back high (141) and I've had 2 ultrasound scans which show a complex cyst in my Right ovary. I was referred to gynae on a 2ww, I saw them a few days ago and she done another blood test CA19-9, still waiting for results and she done a scrape cell biopsy of my womb lining, still waiting for results. I have a hysteroscopy on Wednesday, not really sure what for shevsaid just to get a more in depth look of womb and they are holding an MDT on Tuesday and discussing my file.

I just thought I would give you my back story as your looking for people in similar situations. I'm still under investigation to find a diagnosis, but I'm a bit older than you 46.

Hopefully you will get your scan soon and you will have a clearer picture x

Good Morning Indi,

Thank you for sharing your story.

I feel so lost, my Husband is so supportive but I just feel like communicating with others would be beneficial for me. I seem to have all the textbook symptoms and I'm worried because I was never told that hormonal contraception reduces the risks, and I don't have kids because I've been struggling to maintain pregnancies, which is also a risk factor. I'm just naturally panicking.

Hormone contraceptive is definitely a risk reducer. Unfortunately I came to the end of the road with this. I had the mirena coil for 10 years with no problems then had another 3 mirenas in a short space of time but my body decided it no longer wanted to accept the mirena and it expelled them (the last one got stuck in my cervix while my body was trying to contract it out). I also had the pill but I bled for 6 weeks every day so dr took me off it and agreed that my body not coping well with the extra hormones. I then had an ablation and I have been extra hormone free for just over 2 years and now I am in the same situation as you and waiting for results and a plan.

It's difficult when your trying to conceive, it's very unfair how the body works sometimes. Obviously your staying off contraception to try and conceive but also to the detriment of those hormones that protect you. For me I had the option for contraceptive protection to lower the risk which helped for a while but now my body rejects what protects it. Its crazy but hopefully in a few weeks we will both know what the plan is and have some sort of diagnoses to move forward with.

My husband too is very supportive but yes I feel the benefit of talking to others in the same boat, and reading the positive outcomes from those that have been there with the same symptoms, same tests, same results but come out the other side and moving on positively.

I'm kind of past the panicky stage now, I had a low day yesterday and questioned a lot of what ifs but I can't change the outcome so have to deal with it in a positive light and take from it that whatever it ends up being it will be dealt with and it could be worse. 

I'm a little further along than you with tests and already seen gynae etc but you will have some answers soon and will deal with the answers and can move on.

I've had my scan appointment come through but I haven't been put on the 2 week list. My appointment is in 5 weeks, not sure if that's a good thing or whether to call and ask.

I'm not ever sure of the exact result of my CA125, the doctor just said it was higher than he would like.

I slept well last night but still feel very anxious today. I don't want to wait 5 weeks for the scan. It's probably all in my head like some weird placebo effect, but I feel like the pain and bloating is getting worse this week. I keep trying to tell myself there's nothing I can do but it's not helping me 

Morning,

The waiting too was unbearable for me, although the scan for me was a 2ww the hospital had put me on the routine list by mistake so my NHS scan was almost 4 weeks from referral. I paid for a private scan 1st as the wait was too long and mentally too much. It was called a well womens Check and was £140, I got the results the same day as the scan and they forwarded the results to my gp that day of the findings. I still kept my NHS scan but it hurried things along a bit with referral to gynae.

Good morning mate,

I have considered this as I went to one 2 years ago when everything first started. I had an NHS and ultrasound and CT but they were only of my kidneys and liver as that was the initial concern. So I went private but only had those areas and my GI tract investigated because naively that's what I was told was the issue. It was only £280 so I might just do it again.

My new doctors are so good, I've only been with them 2 weeks and I've had the bloods, the results and the scan referral already so I was thinking about calling them tomorrow just to check. They've done everything I've been asking my previously GP to do for the past 2 years in 2 weeks.

How are you feeling with everything? Is it something you've kept between just you and your partner? I've only told my manager and no one else other than my Husband. Don't want to make a fuss but it's weird because I also want to talk. I've been quite busy at work so that helps it's when I get home that my mind starts to wonder. I'm just wondering how you are dealing with it?

I also feel a little ridiculous because there's poor woman out there that have been diagnosed and are going through it and here I am feeling sorry for myself over a concern.

It's good that your new dr is taking you seriously, even if it ends up being nothing sinister it is best to be checked.

I have told my adult children and my best friend. I work from home doing Admin so that's a bit easier for me I guess.

In all honesty my mind is constantly thinking about it . I have recently moved house so I have lots to keep me busy there and I do rollerskating a couple of times a week so I'm trying to carry on my normal life.

For me the biggest thing is them not telling me a plan, I just need them to tell me the plan regardless, so if its cancer we're going to do this, if it's not cancer we're going to that, if it's cancer of the lining its this plan but if the cyst is benign it's that plan but they have not spoken to me about any of how it will be dealt with. I know they are still working out what's going on with me and if its cancer but they can still give me an idea of how it will be dealt with in all scenarios.

All I know for definite is that I'm having surgery but don't know what surgery. I really hope they have results from CA19-9 and biopsy on Wed when I have hysteroscopy, I will go nuts otherwise.

It's ok to feel anxious while your waiting for tests and results, it's natural, please don't feel ridiculous for being human. What your feeling is normal, its part of the process of digesting the unknowing.

I hope they do have that for you also and I hope everything goes as smoothly as possible on Wednesday and that you get some kind of reassurance from it, you will have to keep me updated! I'll be thinking about you.

I feel similar to you, it's the not knowing because it's like you can't fully process what's going on because it's the unknown. I am naturally quite an anxious person  and I like to know things and have plans, I can't just go with the flow. I like structure.

I'm just grateful someone is finally listening to me and not treating me like I'm a nuisance.

Please keep me updated with how you get on, sending you love and light ️

Hi

Just thought I would update you. I have had a phone call from gynae secretary to advise that I will be receiving an app for a CT scan as consultant wants investigation to be carried out quickly. I asked if results are back and secretary said she is unable to view them but consultant may have seen them. 

I have my hysteroscopy on Wednesday and MDT tomorrow where they were supposed to be discussing if MRI or CT was needed but they have actioned the need for CT sooner.

I dont really know what to take from this only that maybe my consultant has seen something on the results but not disused it with me. Very frustrating and I'm very stressed.