Bloods and Test Results - Patient Knowledge

[Emcee71]

Hi ladies

Do you get copies of your blood test results and if so how are they given to you and from/ at what stage in your treatment?

I am mid front line chemo. I had extra bloods done and 2 TV scans a few weeks ago due to pelvic pain. The doctor doing my 2nd one had my results in front of her and remarked that I had high inflammation, which worried me though I know it can be for any reason and I had been in hospital with a fever a few days before. I mentioned it to the McMillan nurse when I saw her about something else and she said not to worry, if it was of concern the Oncologist would have contacted me

But it had me thinking, since my debulking and 4 chemo sessions I have not had results of my standard/regular bloods except the post op ones (which did not include a CA125).

Lots of you seem to be very knowledgeable of your bloods, including quite a few of you immediately post op.

Should I be asking for copies and if so how - uploaded to a patient portal? I do know CA125 is not reliable on its own but I would still like to know my bloods results. I feel a bit in the dark about it all.

Don't worry about posting if you are not in the UK as I'm just interested in how the NHS operates across different hospitals and what is feasible to ask for.

Thank you

Emily x

PS before op my CA125 was in the 60s along with my CA19 so these must count for something??

[SuffolkJen]

Hi Emily

I’ve never been given blood test results only CA125 results. During chemo they would leave the print out of my bloods on the machine so I took the opportunity at that point to read them. Then I googled what they all meant, the ranges for the blood tests were on the forms to so that was handy.

I’m sure that you are entitled to have copies if you so wish as it’s about you.

I hope you are doing well and finishing chemo soon in time for Summer.

Best wishes xx Jen

[Emcee71 in reply to SuffolkJen]

Hello Jen!

Thank you that's really useful to know!

I will ask for the results to be printed out tomorrow when I go in. My chemo day was moved from a Thursday to a Friday due to the complications /delays last time. I'm sure they will have time to do this for me as Fridays seem to be super chilled whereas Thursdays were like Piccadilly Circus 😆

(I might even get a window seat this time which would be lovely as the chemo ward is surrounded by forest on 2 sides!)

Hope you're well and yes chemo should be over in time for summer and getting hurled back into the crazy world of work. I can't wait but also kinda dreading how I'm gonna cope!!

E xx

[Sunsetime]

Hi , Emcee 71

I am having front line chemotherapy, 3 cycles so far. Each time I have been , before the chemo starts the nurse has gone through the blood results with me which is on the computer. I never asked for a printed copy, however the screen was turned so I could see the computer screen, I asked questions about results which the nurse was able to answer and clarify any queries about liver kidney function , magnesium levels and C125 . I found it reassuring and helpful to be involved and informed. Hope the rest of your treatment goes well and you get the information about blood test results you need. Xx

[Emcee71 in reply to Sunsetime]

Thank you so much for this info, it's really good to know. I will definitely ask for it tomorrow and see if they can print off the previous 4 as well. We should know all of this stuff! Good wishes to you as well x

[Sunsetime in reply to Emcee71]

Thanks Emcee71, I would suggest to ask if someone can talk you through previous blood test results if you’re going to ask for them as you may have questions, I would find it harder to go home with just the results and no one to explain what they meant. Mine have varied , and to be honest if the nurse didn’t talk them through I probably would have googled which would have been very confusing to understand. Good luck xx

[Rankij11]

hi , I never look because I’m an ostrich, but if you can sign up to Patients know best , All your hospital appts are on there and you can see your blood test results

Hope all goes well for your ongoing treatment

Jennifer

[Emcee71 in reply to Rankij11]

Thank you. I did check my PKB and the results aren't on there. Will query thanks again!

[Casamimosa]

Hi, I always text my cancer nurse and ask her for my results. You can see them your nhs app. But they are a bit confusing and I find asking nurse directly is better. I have never been given copies. If you don't ask I don't think it's practise to tell you. At least not in my experience hope this helps.

[Mintybiscuit]

Hi Emcee, I’m on Nariparib and at the moment get monthly blood tests. I think this is the case for people on these sort of post chemo drugs. We have to be monitored because the drugs can have serious side effects. I have a monthly home visit for a blood test and to check my blood pressure. I get my results (fbc, ca125 and renal and liver profile ) 2 days later before my monthly phone call with my oncologist. …

[Doglover1410]

at my hospital we have MyChart patient portal. I get the results a few hours after the blood test. I love it as I gives me the power to check it out before the appointment and ask questions I need to x

[Jacquiemoo]

Hi, yes I would ask about blood results. I, myself get blood work every month now, I'm back on chemo. When I was on zejula, the maintenance drug it was every 3 months. So, regardless what treatment you are receiving blood results do matter. Stay strong.

[Jholly4]

If my GP has ordered tests I see those results in the NHS app but Hospital ones do not show for me as my local hospital does not have a patient portal yet so I ask for copies which they print and send with the patient copy of letters they post out to me.

[Leniko]

i’m in the United States, and the bloodwork that I get shows up on the patient portal the very same day. You should certainly get copies of your blood work.

[candyapplegrey]

Like Doglover, I have access to MyChart. But it does not show CA125, the one you really want to know as they don't want you to worry if it's high. You can see if your other results are within the normal range though. I'm surprised some people can text a CNS. My hospital texts/phones on a number you can't reply on. Speak soon. xx

[Doglover1410 in reply to candyapplegrey]

Mine shows CA125 🤷🏻‍♀️ although I have to always take a deep breath before I open that one!! x

[Emcee71]

Thanks everyone. I did query my bloods and the nurse said everything would be within normal range (though did not go and look at them). My CA125 had not been taken. It was not taken after the op (I have those results) and was not taken pre chemos 1-4 either, I assume. The chemo nurse requested one for pre chemo 6 but only as I had asked about whether it had been done at all (though did not ask for one to be done)

It's very confusing. X

[candyapplegrey in reply to Emcee71]

My CA125 wasn't taken before my op but it was afterwards when it was 133 I think. Was yours taken before the op? That should tell you whether it's a significant indicator for you or not. But I would have thought they would take it again after the op as well. Well, at least you're getting it now. 🤞x

[Emcee71 in reply to candyapplegrey]

HeyInteresting.

I did have a pre op CA125 ... I also had endometriosis so figure it could mean little!

[Carpediem68]

Hi there

I have had all of my blood tests and scan results as soon as they are published on the NHS app - Patient Knows Best. I get most of them even before the nurse sees them except those with sensitive info such as scan reports and CA125. It has really helped me monitor my health as a few times my white blood cells have crashed (I'm on Olapararib and I was able to get in touch with the nurse/oncologist immediately to decide what action to take). On the basis of my blood counts I also asked for a folate test which came back showing I was severely deficient. I can't imagine not getting my results. Having said that, it can also cause anxiety but I'm just not one of those patients who likes to be unaware of what's happening.

Even if you don't use the app you are entitled to get copies of all your data, just ask.

Good luck x

[Beatbigc in reply to Carpediem68]

Ditto all results on patient knows best it’s brilliant

[Emcee71]

Thanks, I do have use of the app but none of my results are on there. It's all rather hit and miss.

[Carpediem68 in reply to Emcee71]

Hi there

I think Patient Knows Best is an extension of the general NHS app. You have to apply for it separately as they need your permission to share the sensitive information. I'm with Imperial Trust. I'm not sure if all trusts use it or not. I'd honestly be lost without it as it's the only reliable way to get my hospital appointment times. Maybe ask your oncology team? The only downside to using the app is that you could start interpreting the tests yourself. I have a biology background and my son is a medical student and even we can't always interpret everything. It can provide both peace of mind and anxiety in equal measure but it has also really helped to navigate my illness. Good luck x

[Irisisme]

Hi Emily,

I ask for, and get, my blood results printed off when I go for chemo infusion. CT scan reports I get electronically from the NHS portal ‘access your own health records’. You can get blood results from there also. GP health records aren’t so easy to get but we are entitled to them and can get them, although you may have to pay for printed copies.

Good Luck,

Iris 🤗