My CA125 showed that I have to have a Scan. I a... - My Ovacome

My Ovacome

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My CA125 showed that I have to have a Scan. I am terrified. My Nan died of Ovarian Cancer last year. I'm 46. Should I be worried.

heleno46 profile image
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I have serious right sided leg pain, boated stomach, not abdomen and like a bubbling under my right rib..

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heleno46 profile image
heleno46
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21 Replies

First of all, welcome. Just because you have a family history, doesn't mean you have OC. Versions of the illness are inherited and then a person is more likely to get it at some point but the incidence of ocis not wide. Then, if you have a family member with it or had it, and if you don't carry the gene, you're only slightly more likely to get it than the general population. CA125 is not a good diagnostic tool as levels can be raised for lots of reasons. I'm advanced stage, but have never had raised levels in my results. It's a good protein marker for tracking the illness. Now you're going to have a scan.. which is good but the likelihood of getting the illness is not huge. It's easy for me to say, I know! Take good care. X

heleno46 profile image
heleno46 in reply to

Thank You Tina . I have felt unwell for quite a long time.I am sorry to hear that you are fighting and send you my warmest wishes.

Hi Helen,

Everyone's symptoms vary, but it is hard not to worry, it is a case of wait and see, as worrying won't change the outcome good or bad, sending you my best wishes love x G x

heleno46 profile image
heleno46

Thank You Gwyn. I know what you say is right, I'll just have to wait for the scan date. (6 weeks) thanks for taking the time to re-assure.

in reply to heleno46

Wow that does seem a long time to wait, (I'm sorry I didn't realise) I am also sorry to hear about your Nan presumably she is older, and at the ovacome members day a speaker there said there that if a person is post-menopausal when first diagnosed ..then it is less likely to be hereditary...of course I don't know at what age your Nan was when she was diagnosed or how long she had ovarian cancer..but I hope this helps...is there any way you could speed up your scan? It is a long time to be worried. Love x G x

in reply to heleno46

I think given your symptoms and family history you would have a strong case for accelerating that scan... It isn't inevitable it's OC, of course, as there are a family of issues in the same region that can cause similar symptoms, so you must stay positive. If its bad you can be sure of support here, and I join the rest of the gang in hoping that it shows something less nasty. Age unfortunately is no help really, though its less common before menopause its still pretty common. I was 47. The good news, if there's good news in being diagnosed, is that on average at this age one will be more robust, more able to cope with the treatment, and the survival rates are better than the average too. So keep your chin up. Find out what it's all about first, OK?

Love

Sue xxx

And my warmest wishes to you too Helen .. And good evening to Gwyn. X

heleno46 profile image
heleno46

My nan was diagnosed at 70.. and lived to a very good age.., but does CA125 show signs of cancer in your system? I cant find any hard facts online, and 6 weeks will be a long wait if I dont know the truth.. I'd rather know it all before the exam.

CA125 can show that but can show fibroids, endometriosis etc. Many people have naturally raised levels too. X

heleno46 profile image
heleno46

Thank You Tina.. My husband is away and I cant talk to anyone.. But thank you so much for listening.. I really do appreciate it :)

in reply to heleno46

Just agreeing with Tina. All sorts of things cause this protein marker to rise - even simple things like ulcers and wounds create inflammation in your system. It's not a measure of anything either - for people for whom it is a good OC indicator (which isn't everyone) it is the trends which provide the insight.

Love

Sue xxx

charlie12 profile image
charlie12

Hi Helen

Welcome and I am so sorry that you are going through this.

At 48 I had an identical experience , my aunt had died the previous year of OVCA. I presented with a massive mass 20cm in my abdomen , anaemia and raised CA125, the doctors thought that I had late stage OVCA. It transpired that I had a non invasive form of ovarian cancer , and have been fine since. I so hope for a similar result to you.

However if you are in pain get yourself to A and E as these things can burst .

We have all been in exactly the same scary place as Yuri our are now and are here for you.

The site has a specialist nurse that you can call next week if you wish , her contact details are elsewhere on this page.

Much love

Charlie xxx

heleno46 profile image
heleno46

Its weird, the pain is numb, but I am so tired all the time even when I wake up! I'll just have to keep my fingers crossed and hope that the results come back OK.

I cant beleive how lovely and supportive you all are.. Thank You

wendydee profile image
wendydee

Hi Helen. It's really bad that you have to wait for 6 weeks, why don't you try ringing the consultants secretary to see if there is a way you can get your scan brought forward. Try also having a word with your GP to see if they can help. I can understand your fear. I was a long time, back to the GP before I was sent for a scan. The CA125 is unreliable though, so don't set too much store by that. It does sound as if need things checking out. Have you visited our parent site. It's ovacome.org.uk If you look at the 'BEAT ovarian cancer with Ovacome' option and scroll down, there is a symptom tracker that you can record your symptoms on and print out. It may speed things up though, if you have something documented.

All the best. It's useless to tell you not to worry, but try and fill your time keeping as occupied as you can. Don't overdo it though, if you are tired. :-( I can remember the feeling of being REALLY, really tired before my diagnosis. Even if I just went upstairs, my legs felt heavy and it was all too much! I was prescribed three lots of iron pills. I presume you've had your iron levels tested?

Keep posting on here if you want to ask or say anything, we're always willing to chat. Even if it's just to say ....'help!'

All the best

Love Wendy xx

Snoopy01 profile image
Snoopy01

Hi Helen agree with Wendy- get on that phone to the consultants secretary/GPas 6 weeks is too long.Nothing ventured nothing gained as they say ! Theres nothing worse than having the worry of it - if i learnt one thing is it to be more assertive and go with my instinct rather than to be sat at home going over things in your head. Taking action will make you feel better and more in control of the situation. Good luck and wishing yiu well fir a giid result from the scan

Very best wishes

fiona

X

heleno46 profile image
heleno46

Thank You all so much. I will call the doctors on Monday and ask who to contact at the hospital :)

TinaWright profile image
TinaWright

Hi Helen,

Everyone else has pretty much summed everything up on here and they are right.

I`m afraid you won`t get the answers that you desperately need until you have been seen and had the results from the scan. Sometimes they tell you right away and other times you may have to wait a week for results or be sent back for a CT scan, which covers a wider range of the pelvic and tummy areas. 6 weeks isn`t that long to wait for a scan I had to wait almost 3 months for mine, but if you haven`t heard anything in a couple of weeks double check with the hospital that your referral has gone through and ask what the waiting time is likely to be, I say this because the first hospital lost my first referral and then I went back to the bottom of the waiting time list. I have to say the second hospital appointment came through very quickly in fact, I had had diagnosis, surgery and home from hospital before the first referral appointment came through. If you have already got the appointment which is 6 weeks then contact the hospital and tell them how anxious you are and ask if there is any chance you can have the scan sooner. If they understand an urgency then you may be able to have the scan much sooner. Keep pestering because it is all very normal to be terrified. And don`t forget to tell them about your Nan, My family and I have the faulty brac1 gene mutation, our risk of breast cancer runs at 85%, we have had no family history of breast cancer in the family and ONLY myself and mother had OV cancer. You can always have the genetic testing done privately it is not all that expensive when you whay it up with the worry that you carry on your shoulders.

Wishing you lots of luck - love from Tina xxxx

citrine profile image
citrine

Hi Helen

Hope you can get your scan moved forward. If cancer is suspected then you are supposed to be seen within a much shorter time frame. I was told it was within two weeks.

Hoping that things will be ok for you but either way, we will be here to cheer you on. Let us know what is happening.

Love Mary xx

Btte profile image
Btte

Hi Helen I feel for you as I felt scared, but I let my own thoughts tell me all sorts of things and made me feel physically ill, I have high grade stage 3 OC on my 2nd lot of chemo. My thinking is very different now so I feel a lot better most of the time, none of know what's around the corner but its surprising how we manage to cope with all sorts of things in our lifetime, I see this disease now as another hurdle of life to jump , but I will keep jumping, and so must you. I think the help and support you will get from this site is amazing, I will be thinking about you. With love Btte X .

sue1212 profile image
sue1212

Hi Helen, try not to worry until you get the results of your scan. I know easier said than done. Your symptoms could be due to anything ...not necessarily OvCa. I'm sure you know that there are a variety of symptoms of OC, many of which are vague and vary from one person to the next. Well done for listening to your body and knowing that something isn't quite right. I truly hope that you get the answers you need following the scan. Obviously this is a very worrying & stressful time. Try to keep busy to keep yourself distracted. Did your Nan have any genetic testing done? If your Nan had surgery, I think they store tumours for a certain amount of time so it would still be possible to do any genetic testing if you need to (I think).

All the best and let us know how you do.

Sue

heleno46 profile image
heleno46

Thank you ladies. I have my scan on Friday. I am trying to keep busy and not stressing. You have all been so thoughtful and supportive.

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