Right at the start

[Riley07]

I’m right at the start of this….went to GP with bloating and constipation 4 weeks ago - he requested blood and FIT tests and referred to gastro as he could feel ‘a lump’ lower on my right side. Gastro consultant took one look at my blood test results and referred me to Gynae Oncology….my CA125 was 3237…..

Ultrasound has shown ‘suspicious’ ovarian cysts and I had the CT scan with marker on Thursday. MDT at Southampton have met and I’m booked to see Mr Metcalf on Friday. I am pretty nervous but psyching myself up for a hysterectomy at the very least.

Very surreal - trying to take it day by day - how can the blood test be that high?! I actually don’t feel unwell - but bloating is getting worse by the day. Xxxx any tips? X

[Florrie2]

Hi Riley07

I think you’ve given yourself a good tip in taking it day by day. The waiting and not knowing is one of the worst parts. There’s nothing I’m aware of to help with your physical feelings, just sit tight and have confidence they will tell you the right treatment that you need. The bloating could be caused by different things.

Good luck on Friday x

[Riley07 in reply to Florrie2]

Thank you xxx I couldn’t believe it when he told me the blood count - id had test 18 months ago and it was 48 but scans were all clear so no further action taken so whatever it is is pretty recent x

[BlueHue22]

Hi There,Firstly so sorry you are going through this, I really feel for you reading this💛

On a good note its good that the GP spotted the lump early, you got a CA125 and are on the right path from the get go.

Everyones CA125 range is different. Some peoples can be tens of thousands and some under 100 over lower on diagnosis. But as long as it comes down with treatment it doesn't really affect the outcome. I can appreciate though how scary this may seem when you find out the number aside from a meeting to discuss it.

Agree that the waiting is a really hard part and you don't know anything for sure until you have the meeting. I jigsawed and played games on my phone through this period, anything to give myself a mental break. Sounds like you've already taken the day by day approach which is great and exactly the way to go.

I'm in my forties and through the whole thing so far have never felt really unwell and its so surreal to be told stuff is going on when you feel quite good. I guess this is why OC is so sneaky. With the bloating I would discuss it at the appointment and make sure they listen to you concerns and offer some kind of relief for it if possible. If it is OC related your treatment should resolve it.

I hope that you recieve good news and theres some other explanation but if you do find out its OC there are improved treatments beyond the google info and a community of women here ready to help and advise you.

Take care xx

[Riley07 in reply to BlueHue22]

Thank you! I’m 53 - I feel ok, 4 weeks ago I was kayaking and hiking round the Fjords - couldn’t do that now though with this bloating xx but I’m walking my dogs every day and just trying to prep/keep fit as I can for any surgery upcoming. I must admit I’m not relishing the thought of that - I’ve never had any abdominal surgery xx

[BlueHue22]

Wow sounds epic!😁You are clearly fit with a positive mindset and this will stand you in really good stead for any treatment. Once you get the bloating sorted sure you'll be back out there again👍Also make a list to ask for your appointment, if you stay pro-active and strong you will be on a good path. If you want to ask anything else just let me know xx

[Riley07 in reply to BlueHue22]

How quickly do they get you in for surgery? Realise it must vary due to capacity around the country but roughly how long did everyone have to wait for the hysterectomy?

[BlueHue22 in reply to Riley07]

Hi, I was offered chemo before any attempted surgery. Hopefully somebody who had surgery upfront can advise you on this👍

[Coco32 in reply to Riley07]

My pathway from first Gynae appointment to surgery was about 3 weeks - they really didn’t hang about. Would have been less than 2 weeks, but my first appoint. was cancelled because the surgeon was sick.

My bloating turned out to be ascites - fluid build up. Which did get worse in the weeks before surgery.

All the cancer issues aside since healing from surgery my abdomen has never felt better, I don’t suffer bloating or cramps anymore and no more migraines either- - so there is that!

Wishing you all the best.

[Riley07 in reply to Coco32]

Thank you xxx so, Stage 3 - biopsy in next few days and then 3 chemos, surgery and then 3 more xx they did say that even with the chemo the fluid will reduce so that will be a plus x just psyching myself up for it all now! Xxx

[Trickysite]

Chemo often given first before op. Doc will give you a plan. Emma x

[Riley07 in reply to Trickysite]

Hope he’s been working on his plan cos he’s had my results for a week 😳xxxxx thank you so much, I hadn’t realised that but guess it makes sense although I want whatever it is out to be honest xxx

[lesleysage]

Hello and like everyone on this site, sorry you have ‘joined’ but you have started with such great guidance from the others. My only addition is to have Ovacome’s resources in mind as there is usually something that most of us on this site have found really valuable and useful over the years. Warmest wishes and great that you got the kayaking and hiking in before this - brilliant. Xx

[Riley07 in reply to lesleysage]

Thank you - lots of positivity on Ovacome which I like xxx I’ve lost 2 close friends to this over lockdown so this is blowing my mind that it’s got me too 😳 but can see that in a lot of cases there’s lots that can be done so everything crossed xxxxx