Ask for scan reports - most people don't think to ask for it for themselves but you need to ask if you want more clarity.

I find it helpful to ask for a copy of the scan report. Then you can keep it and find pics online of what you need to search out more. My Onc always gives me a printed scan report when I ask and reads it through with me explaining all the terminology.

[Choski]

That's good advise.

I naively started off thinking I'd be copied in to what I needed to know... big mistake.

Then I asked for copies of my docs- hit and miss.

Then with 3td Oncologist back to nothing and letters going to my GP had incorrect detail in them -still.sorting that

Then recurrence confirmed at end of Jan and STILL trying to get copies corrections etc.

We shouldn't have to battle this as well when we've made our requests for information and clarity clear.

Good advice thank you

Clare xx

[Hidden in reply to Choski]

I think the tendency in NHS is to assume you are happy for them to be in charge. I find when I express interest in seeing the actual scan result, X-ray report etc they are taken aback. But they treat me respectfully and agree I can have them. You need to ask at the time they feedback a report to you and they'll print you off a copy. I think in other countries because you pay for health care you would automatically be given all these reports for your file. We tend to be very passive patients in this country which works for many, and the system encourages that. But not for all of us, those for whom knowledge and understanding brings peace.

[Tesla_7US in reply to Hidden]

Hi DebWest, I live in Seattle,US. By law each caregiver must provide the patient with a report summarizing each visit, provide a copy of EVERY lab report and every scan if asked to do so. We can also request a copy of our entire medical record, which can be thousands of pages. I have had need for copies of old records only to find dangerous errors recorded. For example, my record said I had chemo for breast cancer over ten years ago, when I had had NO chemo, only mastectomy. So, ask for copies of your records during each visit.

[Neona in reply to Choski]

I so agree with you Clare!

[Calcal]

I'm in Italy & my husband ,who is being treated for 1V stage colon cancer under NHS, is given all his scan reports including the C.D. - the oncologists keep copies

[yewbarrow]

Sounds great, did you have to push for this? I find it's really hard to be included in information about yourself! I work myself up every time i know I'm going to ask for more info about ME! However, it's not usually as bad as i anticipate but you have to ask otherwise information given seems to be minimal.

For anyone like me who finds it hard to ask for information, write down what you're going to ask about, even how you're going to say it so it's less daunting when you do it. It gets easier each time!

[passenger1]

I didn't realise that I could have my scan results, thinking it would be graphs and I wouldn't understand it. Then I was told about 3 years ago that I could request it, so since then I have always asked for a copy after the Onc has discussed it with me. In fact it comes automatically to me. I have found it invaluable as I can compare to the last one to see how much the OC has been stable or in my case deteriorated. So ladies asked for your scan results if you want to see them. Of course I respect that not everyone wants to have theirs.

Regards Barbara

[greenpink]

My Oncologist always shows me the scan pictures on her computer, so I can see "me" and she talks me through the details one the images. This helps me visualise it all

[Hidden]

Likewise my oncologist talks me through the pictures and written report on her screen. I do get all the CDs, but don't go back to them. Would be useful if you ever needed a second opinion though to have all your own data.

[Biscuitqueen]

Whenever we asked to see the physical picture of the scans etc, the doctors and nurses were so taken aback and refused, saying that it's not the policy to do so. I knew something was fishy and seeing that some of you ladies even get copies on CD, I'm going to have a dig!

[LesleyGreengran in reply to Biscuitqueen]

The law was changed a few years back to say we have a right to our notes. Some health care staff haven't caught up with the change though they should have by now. Some people don't want to know but I expect most people on here do.

[Neona]

This is good advice. I have found it a problem getting any information at all. I asked for a copy of my pathology report and was told oncology didn't have it??? I asked what hypoalbumineamia was and was told " you don't need to know". I asked what future treatments were available for clear cell and was told " you don't need to worry about that now".Eventually, after moaning to my councillor the CNS phoned me and went through my pathology report over the phone. I still haven't been able to find out how much of my colon was removed. Why the secrecy?

[LesleyGreengran in reply to Neona]

Good for you but we shouldn't have this hassle.

[Janet235]

Yes on asking, I actually got the print out that the doctor was reading from this last visit ( Tuesday) but in the past it has been hit and miss - sometimes I got it in the post after and other times they just forgot. Annoying that they aren't proactive in automatically asking you if you want copies of reports etc.

[Hidden]

Neona, I did some nurse training and nurse tutors often said to us student nurses "that's not for you to know that's for the doctors" again and again. "Not for you to worry about". That was early 1990s. It's a bit of a mantra in hospitals it seems, spoken without even thinking.

[Neona in reply to Hidden]

That's shocking!

[Hidden]

Hi Deborah. I've been on the avastin trial for quite a long time. Every 3 months I have to have a CT and a Gated Heart scan. I'm not told much more than "yeah - all good". But once, the nurse, after completion of the gated heart scan, asked me if I'd like a copy. I took it. It was a small, vague picture (not like the CT scan I've seen on my onc's computer screen), and I could see a dark area ! I was convinced this was a cancerous shadow and my OC had returned. My husband pointed out that I had no idea what I was looking at, so I should forget it until I saw the onc. But I worried. And I worried. When I saw the onc, the result was "yeah - all good". I think for me, I'd better stick with blissful ignorance. I'm sure that's exactly why they'd rather not keep us informed. They have years of training. We haven't. Best wishes. Pauline

[Hidden in reply to Hidden]

Paula, I don't get copies of X-rays - and pictures. I was referring to getting the written report which states very concisely in medical terminology the correct interpretation of the scans. Best wishes, Deborah

[LesleyGreengran]

My oncologist shows me the report on the computer screen if I ask questions. I find the scan itself hard to interpret though, and my partner thought the white bits were cancer (they're bone). Even the oncologist needs the radiologist's report. I like to be shown when they are there and can explain. I'd worry too much with a printout but it should be available to anyone who wants it and I'm fairly sure they have to by law now though they can charge you for the printing (GPs can anyway.)