Lost tests

[Aemi]

Hi I havent posted for a while, though I still check in as to whats happening to everyone.

I had to do a 24hr urine collection (not sure if this is the CA125 test) plus blood test a month before my check up with my oncologist so the results would be there for my appointment.

When I took the urine collection and gave it into the lab I went straight to get my fasting blood test done after a long wait I was called through but they couldn't find the test request from my Doctor on computor. After being bounced from one department to the other several times my onc's secretary came to find me and finally sorted it out so the blood test could be taken.

My appointment was 22 September and when I got in to see my oncologist she told me the test results weren't there as the urine one was missing. They would investgate what had happened, but to make an appointment for six months time. I was not happy with this and asked the CNS to let me know their findings.

It turned out that my urine collection was sent for testing on the 18 September 2015, even thought I'd taken it in on 24 August 2015.

I asked if it would still be suitable for testing after such a long time but never got an answer. I was told that if there was a problem they would contact me. Not happy in case they forget I said I would phone for the results and was told to try in six weeks.

Now im wondering if the test is any good and if I should just do another one. Feeling left up in the air over this. Any comments please?

[Hidden]

Ca125 is a blood test,I'm am surprised no one done a fresh urine test,I definitely wouldn't accept a result on a sample that old.

[Aemi in reply to Hidden]

Thanks for your reply. Yes it's the blood test I had , I looked it up. Dopey moo I am , should know this. X

[Hidden in reply to Aemi]

Have you had the results of ca125 yet?it doesn't take 6 weeks for a urine or blood test result.hope you get them soon

[Aemi in reply to Hidden]

No results yet. It seems pointless to see the oncologist without test results, as ive only got results from six moths back. Feeling irritated by the system.

[devotedtolife55]

Your post struck a chord with me as I have 2 cancers, Ovarian cancer, currently in remission (3 years) and Neuroendocrine Tumours (15 years) and the 24 hours urine test and fasting blood tests are both tests used for the Neuroendocrine Tumours as it is detected in the urine. My urine check results take between 4 - 6 weeks for the results to come back and are often not available when I have my Oncology appointment. I have been having these checks for 15 years but only for Neuroendocrine tumours. I am not an expert on Ovarian cancer so I don't know if they use the 24 hours urine test for this but I have never been asked to do so for this type of cancer. The other ladies on this site will be far more knowledgeable on this, but could it be that your hospital was doing a precautionary check?

[Aemi in reply to devotedtolife55]

Thanks for your reply I also was diagnosed with ovarian cancer and then neuroendacrine cancer. All signs of disease removed in surgery last year with no further treatment. Testing every six months. It's good to know what these tests are aimed at. Last round of tests no sign of disease. I think I need to contact my CNS as last appointment with my onc' was unclear.

[devotedtolife55 in reply to Aemi]

I go to two separate Oncology clinics (Ovarian and Neuroendocrine) which, luckily, are held on the same day of the week and the Oncologists share my CT Scan results tracking the two different cancers. I keep a separate list of questions for each clinic and focus on that cancer when I am with the relavent Oncology team and have found this works well. This way I also have access to two different specialist nurses if required. I think I would also find it confusing if I did not know what they were doing for what cancer so I fully understand how you feel.

[Aemi in reply to devotedtolife55]

I think I need to prepare more when I go to my appointments. I have been discharged by ovarian oncologist as the surgery is considered successful. Only see neuroendacrine oncologist now. I am having copies of all correspondence between Doctors and have more information about what's going on like this. Just recieved copies today.

[Aemi in reply to devotedtolife55]

You certainly must be on the ball to have all this under control .

[devotedtolife55 in reply to Aemi]

Thankfully, I have had fifteen years to practice. Take care and good luck.

[Aemi in reply to devotedtolife55]

Nice chatting to you. It's good to speak to someone with experience though I wouldn't wish this for you. I hope you get totally well.

Good luck X