Hello ladies - I haven’t been on here for months and for that I apologise as I haven’t been able to offer anyone any support - which is not good - sorry.
I am having a huge wobble and I’m asking for some info please? I am due for a 6 month check up tomorrow (this will be 4 years since the end of treatment dx IBC July 05) and I’ve not been feeling great for some time now - either mentally or physically. Anyway - on my last checkups they basically do an examination and ask questions, that’s it. What concerns me is that they are feeling for lumps which is great, but how do they know if it’s spread to other areas? Does anyone else have blood tests done (I think it’s the CA125 test) to check out the rest of the body?
I think I’m being paranoid about it all - but it does concern me as I have a huge amount of pain in my bones. I am on Arimidex and I’m aware that pain is a side effect, but there’s that little seed of doubt in my mind.
I’m sorry for sounding paranoid, but I’m so far down the path for being in the 'no evidence of disease’category, that I want to stay that way.
I wish you all continued luck and best wishes
Love
Flossie
I am trip neg not IBC but I have complete blood test done every 12 months [including CA15.3].I am seen by surgeon and onc alternately so I see one or the other every 6 months.The tumour markers are only really relevant to monitor rate etc of spread I think.In your position I think I might be asking for a bone scan.
All the best
Valx
Hi flossie
My check-ups are the same just a feel around then chat.Do tell them your concerns about blood test’s and the pain you are having they will check things for you.My Oncologist said that is what the chat is for so you can tell them any little niggles or if your not feeling to well and they will arrange tests or scans even if its just for peace of mind.I think the CA125 test is for ovarian cancer and CA125 can also be produced in other conditions so it can be unreliable.
Wishing you all the best for tomorrow Mel xx
Thank you Mel and Val for such a quick response. I really appreciate your comments - thanks.
I will talk to the Onc team this afternoon and see what they say. Thanks for the correction on the CA 125 - I think I had that in my mind as I accompany a friend to chemo every 3 weeks and she has ovarian cancer - so I think that’s where I got that from.
Thanks again for your support.
I wish you both and everyone else all the best
Fi X
Hi Ladies
I just thought I would let you know that I have had bloods done which included the CA15-3 (??) and I’m booked in for a bone scan.
Sp thank you very much for your support - I am really grateful and am starting to feel a little less paranoid now.
Thank you both.
Take care
F X
Hi flossie
Hope your blood test and scan are clear,and it puts your mind and rest.
love Mel xx
Hi Flossie,
Can I ask you if you had a bone scan back in 2005? I have the same concerns and although my bone scan at diagnosis was clear 2 years ago, I too have niggles about all my aching bones and wonder if I should request another one as cancer was also in lymphs.
Good luck with your outcome,
Lynn x
Hi Flossie
I have follow-up every three months, but to be honest it’s very basic. During treatment I had my Ca125 measured, but nothing similar has been suggested since I finished treatment in 2009.
I worry lots about bone mets too, as I have, like you, hideous bone pain from my AI’s
hope your follow-up goes well, Rx