Abdominal pain

[Jesse59]

Hi everyone it’s been a while since I posted anything . I’m 5 years free of O/C and about to be discharged. Recently iv experienced lower abdominal pain and blood in my urine . Has anyone had this and is it a sign of recurrence. Thanks Jessie

[Lovedogs41]

Hi it could be that you have a uti?

[Jesse59 in reply to Lovedogs41]

Yes the dr thought that but it came back negative. I’m probably worried for nothing but it’s always on my mind.jessie

[Mammi in reply to Jesse59]

Hi, just wondering is it possible as you have passed the 5yrs clear that you could still request a ca125 blood test ?would at least put your mind to rest. I’m also 1c3 but 3years behind you so interested in how things work when the security blanket is removed at 5yrs. Take care, push to get it sorted & keep in touch! Hugs Dee x

[Chorlton_ in reply to Mammi]

Sorry to jump in on your reply to Jesse59 but I think you raise a really good point Mammi. I have stage 1c2 (grade 2) endometroid epithelial ovarian cancer and I'm still undergoing chemo so I have a CA125 blood test every three weeks and then I believe it will go to every three months and then every six months after two years.

Mammi are you currently having CA125 blood tests every six months? Or perhaps if it's within two years of your diagnosis then every three months?

Hopefully if my chemo works and my CA125 blood tests do not highlight any concerns then a question I will be asking my consultant oncologist after 5 years (really hoping that will be my journey) will be how do I continue to have regular CA125 blood tests? It may be we are allowed one annually on the NHS but perhaps have to pay privately for anything more frequent?

I do wonder if some people pay privately to have quarterly CA125 blood tests during years 2 to 5 on the quarter when they are not routinely tested.

[SUE7777 in reply to Chorlton_]

Just jumping in on this thread, I'm sure your GP would do a CA125 blood test for you every 3 months if you ask instead of going private. Then you'll be in the right place to sort things out if anything shows up which hopefully it won't.

[Chorlton_ in reply to SUE7777]

Thank you Sue. Yes, you're absolutely right and rather than me paying privately I'm sure I can ask my GP. I must say, to date, the hospital where I'm being treated have been wonderful and if they see I'm keen to continue with my quarterly CA125 blood tests they may possibly agree to continue with them but if not then yes, you're right, I should ask my GP.

I know not everybody's CA125 rises with ovarian cancer but mine definitely did and with my consultant oncologist saying mine is a CA125 secretor I'm hoping that if it were to rise then straightaway I can ask for a CT scan.

[Jesse59 in reply to Mammi]

Hi Mammi Iv had ca225 checked every 3 months for 5 years . It was never higher than 14 when I was diagnosed and has been 5 since the treatment. Strange isn’t it

[Chorlton_ in reply to Jesse59]

My consultant oncologist informed me, which I wasn't aware of, that some ovarian cancers are CA125 secretors and some aren't. This is why not everyone can rely on the CA125 test.

I presume during the past five years you also had regular CT scans as well due to your CA125 level not really ever rising?

[Jesse59 in reply to Chorlton_]

No Chorlton I haven’t had scans at all and for the past 2years have only had phone appointment from my oncologist with the covid scare . This is what worries me

[Chorlton_ in reply to Jesse59]

I think based on your original question and your worries you were going to speak to your hospital and request a CT scan. I do hope you now have one booked.

Please ensure the CT scan is 'with contrast'. They will ask you to drink a litre of their drink (not entirely sure what is in this drink). It usually has an aniseed flavour however your hospital may be give you the option to have it flavoured. I chose orange flavour however I know some people choose blackcurrant.

I think the sooner you have your CT scan with contrast the better to give you peace of mind.

I really do hope everything is OK but definitely worth getting this checked out.

[Chorlton_]

Definitely worth having your bladder checked. Blood in your urine can be a sign of bladder cancer so definitely worth checking that everything is OK with your bladder. I’m sure it’ll be fine but this isn’t something to dismiss as nothing.

Have you ever been a smoker?

[Jesse59 in reply to Chorlton_]

Thank you Chorlton

[Chorlton_ in reply to Jesse59]

You're very welcome Jesse59. Sorry that my reply was short and reads as quite abrupt. I sent it in a hurry. Sounds like you are doing the right thing getting a scan and this will hopefully be nothing but it gives you peace of mind xx

[Mammi in reply to Chorlton_]

Hi Chorlton, I was diagnosed Nov.2019 & when chemo was completed May 2020 was told that CA125 would be checked every 3mths, then @ 2yrs every 4mths, 3yrs every 6mths then yearly up 5years! So I’m still on 3monthly but I suppose peoples situations may vary🤔Hope all is going well with your chemo, not a great time but definitely worth sticking with it .Be kind to yourself!x

[Mcgavin in reply to Mammi]

Hi Mammi I suppose every hospital does things different, I am now in remission for 4 years & still get checked every 4 months. Since I had my 2nd vaccine back in June 2021, I have abdominal pain, but my CA125 is still 8. I am now waiting to have a CT scan, just to be sure cancer isn't back.

[OvacomeSupport Partner My Ovacome Team]

Hi Jessie

Thank you for your post. I’m so sorry to hear that you’ve been experiencing lower abdominal pain and blood in your urine. Is this something you’ve been able to discuss with your clinical nurse specialist at the hospital, or a member of your clinical team? They should be able to offer personalised advice on these issues and suggest any further investigations that may be necessary.

I hope that a conversation with your clinical team, or your GP, will provide clarity and guidance for you, and that your symptoms are resolved soon. If you would like to talk through anything with the Ovacome support team, please don’t hesitate to get in touch. You can call our support line on 0800 008 7054 or 07503 682 311, email us via [e-mail] or message us directly through this forum if you prefer. We’re here Monday – Friday, 10am – 5pm.

Best wishes

Annie

Ovacome support

[Jesse59 in reply to OvacomeSupport]

Thank you so much . Iv spoke to the support nurse today and she is looking to get me in for a scan . Fingers crossed

[Saintgermain]

Hi Jesse59,If a person has a kidney stone it can move and cause lower abdominal pain and blood in urine not sure that’s the case thought I would throw that out there. congrats on almost 5 years Hugs Tammy

[CastrolColours]

I would just explain that you’re worried and as somebody else has already said ask them to put your mind at ease and do a CA125. Before they discharge you.

[Jesse59]

Well I had a scan with contrast 2 days ago just a waiting game now . I can’t believe how quick they got me in . I am feeling much better in myself so feeling positive.