Symptoms and worried

Hi Gemmo,

Really sorry you find yourself here, but glad you’ve found it helpful and inspiring to read the stories of others on this site.

I understand from my own experience how hard the period of waiting and not knowing is - for sure you’re going to have a million and one questions, “what ifs” and “maybe’s” racing around in your head. I hope you’ll find it easier once you have a diagnosis (whatever it is), and a treatment plan, so you can focus on the next steps and getting yourself through them, and back to your old self.

Your symptoms sound a lot like mine - bloated tummy and around the waist at first, then some extreme cramps in the lower abdomen (which was what made me visit my GP). Although mine turned out to be Stage 2b OC, these symptoms can be the same for so many different problems,  and the CA125 seems to be the best indicator. It’s good that your ultrasound earlier in the year was clear anyway - so try to stay positive if you can.

Wishing you good news on Tuesday - and it’d be great to hear how you get on if you feel like posting again.

Be thinking of you,

Bx

Thank you so much for replying to my post- it meant so much!!!

I got an early call this morning from GP to say that the CA125 has come back higher than normal, so my GP is putting me forward for urgent scans.  Feeling scared but am remaining positive….. did you have scans with your symptoms? What happened from there? 

How are you doing now B.positive? 

G x

Hi Gemmo,

Yes - following my CA125 results, I then had a CT scan. Not sure if you’ve ever had one before but they’re not too scary and don’t take very long. I think (although I’m no expert) that the CT scans are able to pick up details that ultrasounds can’t - so good that you’re GP is getting you booked in quickly. What normally happens then is your medical team will meet to discuss the results, and make decisions on what the appropriate next steps are for you. Each stage is meant to wait no more than 2 weeks - so I strongly recommend you chase up if you experience any delays !

In my case, the decision was taken to do surgery first (and I had a full hysterectomy back in December 2020). This was followed  by 6 cycles of chemo January to May this year, during which my CA125 returned to normal, so luckily I haven’t needed any maintenance drugs so far. I have my first 3-monthly check-up coming up next week so am a little apprehensive, but still staying positive and feeling generally ok (thanks for asking ).

The waiting is hard, but if you’re able to remain positive, eat and sleep well, and keep as active as you can, then you’ll be in the best shape you can be for whatever treatment lies ahead.

All the best, and keep me posted,

Bxx

Wow, sounds like you have been a true warrior!!!! I’m so glad that you are feeling positive and generally okay. I hope your 3 monthly appointment goes really well. 

Thank you so much for taking the time to reply to me and explain what I could expect next with regards to scans and time scale: really does mean a lot. 

like you say, it’s the waiting now… but I will remain positive!

would love to know how you get on with your 3 month check, if you feel like sharing.

wishing you all the best,  

G x

Hi Gemmo, hope  you’re doing OK - do you have a date for your scan yet?

For me, not quite the news I was hoping for today Unfortunately (although not a complete surprise given some revent tummy problems I’ve been having). My CA125 has gone up from 19 to 55 since my last test in June, which my consultant says suggests there’s a few rogue cells somewhere that have managed to dodge the chemo

So - back next week for another scan and and consultation - then probably some more chemo on the cards for me through the winter.

Determined to stay strong and positive and to beat this thing though 

Bxx

Hi B,

I’m so sorry that you got that news today- hope you had some support with you? 
you truly are amazing…. To keep such positivity, is heroic! ️

I have heard back about scans, which have been scheduled for end of September, which sounded like a way off yet, I did call the doctor but the receptionist reassured me that that was good. 

The pain isn’t so intense now, more niggling than anything- always aware it’s there though. Maybe it’s because I’m more on edge about it? The bloating is still there too….

You are so thoughtful to message me- I really do appreciate your kindness. 

stay strong and keep your great positivity- you are awesome! It would be good to hear how you are getting on if you feel like sharing… ️

G xx

Hi Gemmo, your message encouraged me to post. I have had bloating and back pain for  while and although I was sent for an ultrasound my ovaries weren't visible due to gas in stomach. I am going to request the blood test tomorrow following reading all your posts. I'm terrified tbh but reading this forum really helped. So thank you and good luck. X

Thanks Gemmo.

Glad to hear you’re not in as much pain now - Not sure what you tend to eat, but I found cutting out dairy and gluten really helped relieve the bloating.

Would be great to hear how your scan goes - be thinking of you

Bxx

Funny you say that, B. I have been using dairy substitutes for a bit now. Maybe I should try the gluten too! 

will keep you posted with the scan.

Will be thinking of you too!

G xx

Hi fitzy1909! 

its v worrying when you have symptoms…. I know it has been worrying me for some time now, especially now my CA125 has come back higher than “normal”.

you are doing the right thing. It is good to eliminate and investigate your pain and bloating. 

I wish you well do let us know how you get on if you feel like sharing. 

G xx