Ca125 query

In my experience scans are the key to see what's really going on, along with biopsies as necessary. And ask qustions - this website is very good and you can call the helpline. I've had a lot of treatment and surgery and have always found that all of the medical staff along the way have been great. My CA125 levels have varied and it's not necessarily a sign of anything "bad". A very difficult time for you with so much up in the air !x

Thankyou for your reply, i am ok and not panicking, its more a feeling of waiting around and guessing. I have been given my scan date for August 26TH. It makes me think maybe it isn't so urgent then. The doctor said it was but the hospital seem to be taking their time. I wont panic until i really need to. I just wondered what everyone else's experience was? xx

Hi . Only just joined today so I am a bit late to the party so to speak . But yes I did with a CA125 of 42. All is ok now though . Had my hysterectomy in January and after treatment I show no evidence of any cancer  now. How did you get on with your scan ? 

Hello

Thankyou so much for your reply, well I'm still in this long wait and investigation. So after my intravaginal scan a structure was seen, I was then sent for an emergency MRI. Once again a structure was seen measuring 7x7x3 with a solid compound. The consultant has said they do not think it is anything to do with my ovaries or fallopian tube as it's sitting next to my right ovary. So at the moment it's a bit of mystery to what this structure is. My report and notes are now being sent to the MDM and I will be discussed in their meeting on Tuesday. I'm absolutely fine which is quite surprising. It's the waiting around not knowing what's going on that's frustrating. Id rather no what is what no sugar coating and no faff. I just wondered what happened with you? As I said my bloods were done and my ca125 was only slightly raised which is what prompted the doctor to push for more tests. I have symptoms that I honestly thought was down to perimenopause (I'm 46) but now starting to wonder perhaps it isn't? Awful night sweats where my clothes and bed sheets are soaked, lower back ache, hip pain, abdominal pain, bloating, awful fatigue etc...just frustrating waiting....do you mind telling me what happened with you? Did you have to have chemo? Anything else? How was it discovered with you? x

I dont  mind telling you at all. I have always had a flat stomach even into my 60's. Last year I felt my stomach was bloated all of the time and even if I ate virtually nothing in a day the bloating would not go 

I mentioned it to my doctor on more than one occasion but he just dismissed it and said its normal to have a bloated tummy at your age ( was 70 last October) I said but its NOT normal for me

Then in  October last year I had a vaginal bleed so went back to the docs,saw a female doc that time and she put me on the 2 week urgent cancer pathway.  Had an internal scan and they said they could see something by my left ovary but they did not know what it was.  Then got see by gyno surgeon who again did an internal scan and said right off the bat he suspected possible cancer and as he did not want to waste time with more scans he just went straight for the surgical route of a full hysterectomy.  Tubes , ovaries,  the lot 

Surgery showed it was stage 2b. But surgeon said it was not as bad as he had thought as it appeared to be contained in my womb area whereas before surgery he thought possibly it had spread outside 

Then I was seen by oncology who suggested the chemo for what they call 'mop up' chemo. Just as an insurance policy to kill off any microscopic cells that may have 'escaped'

So yes I did 6 rounds of chemo 3 weeks apart.

I actually did not find it too bad at all and actually managed to go to my ballet class the day after chemo although I did lose my hair which was actually the hardest thing

I found chemo day was ok. I mean I got to sit in a comfy chair all day and could read  , listen to my platlist , watch catch up on my tablet etc or even nap. Day went really quickly and actually made a nice change to get a complete.day of not having to do anything

But once imy hair was gone I just got on with it, got some lovely beanies and wigs . Finished chemo 2 months ago and hair is starting to grow back now and my latest 125 was ten so well under the 35 considered tops for normal levels 

I agree the waiting is really the hardest thing but once I knew the whole process was not as scary as I had thought it would be. I found i am.a lot tougher than I thought 

One thing that I know for sure got me through it was my positive attitude and the desire to try as best I could to carry on my life as I  normally would but at the same time recognise when I needed to rest 

We did get a cleaner come in as I did not have enough energy for that plus hubby is rubbish at cleaning

Hope that helps 

Thankyou, do you mind me asking what other symptoms you had? My mass is apparently sitting next to/behind my right ovary. But they now say it's nothing to do with my ovaries.however I'm not sure I agree. I have urgent need to wee all the time, bloating feeling full, abdominal pain like period cramps all the time, extreme fatigue, lower back ache, hip pain and as mentioned before a slightly raised ca125 x

I really had no other noticeable symptoms at all   other than lower back pain but I suffer with that anyway and nothing would have been done had I not started  the bleed in October .  My bloating was actually found to be fluid and blood ans went down as soon as I had surgery and the fluid had been released.  You know your own body between than anyone so please go with your gut 

I really think you need to push them after the MDM . I am surprised they are taking their time with this to be honest as , without trying to spook you , but anyone presenring with your symptoms is classical OC symptoms ..of course there are all sorts of other things it could be too but they need to crack on.! What hospital are you under 

Yes I hear you, to be fair I'm in the 2ww pathway. But I still feel like I'm waiting around, I had my MRI last week and the consultant phoned the next day to say it was being passed to the MDM tomorrow. But still that's another week. I also waited 6 weeks for my intravaginal scan . I do have a gut feeling something isn't right. I'll have to wait now and see what the MDM decide tomorrow. I'm in south east London. I have bloating all the time tbh and just feel generally uncomfortable. I'm hoping I get some news tomorrow x