Hi ladies
I was just wondering if you usually get to see the scans when you get your results? I have so far never been shown them only given verbal feedback. It is only my 2nd scan after end of chemo but was not shown ct or MRI at diagnosis. Is there a standard protocol for this?
Thanks in advance
Madeline x
Hi Madeline, Judging from posts on this forum it seems there are different practices in different places. I've been treated in two very different hospitals and have never seen my scan results. I'm not sure I'd really know what to make of it anyway. I've been going for scans for 4 years now but last visit asked my oncologist to describe in a little more detail where the tumour sites are. I think if you ask for the pictures you will be shown them. It's whatever makes you feel best.
xx Annie
Like Annie said I don't think you would be able to make much of them anyway. I remember my Comsultant showing me my first scan and explaining it to me and I couldn't make head nor tail of any of it. It reminded me of when I went for scans when I was pregnant and they were explaining it to me and saying now there's a leg and thats the head and I just couldn't see anything. Kerry x
HI there, when my scan is finished, they just ask when I am due back to consultant. I get the scan results from his verbally then. He has never shown me any reports, I think they just get them in a report over here from the radiologist
Hi there
Your scans are part of your medical record s , which you are entitled to see. If you feel you would feel more reassured or that seeing them would be helpful for you , then ask.
This phase at the end of treatment is really hard , like you I have a bit of history with my doctors and its so hard when that happens. I am five years out now and time really is a wonderful healer. This all takes ages to get over , be kind to yourself with treats if you can.
Love
Charlie xxx
Hi!
After my first CT scan my oncologist showed me the whole thing, which I was very grateful for. Perhaps you should ask.
Love
Anne x
I've never really had my scans described though I've asked for that. When I had a necrotic tumour at A and E and had to have emergency surgery to save my life, I was subsequently told, 'Well, we knew about it.' Had I had an input, I would have had safer elective surgery. I was told I had a bit of inflammation which stood out basically. Now I know my doctors didn't think I would live long enough to justify an op. You know though, I am still here and happier than ever. Doctors are not Gods and no human knows the answers, but only the odds. That's why what a patient says matters. xx
Hi, it depends who my appointment has been with. My oncologist and gynae have never offered to show me the scans but a radiologist has. Found it very interesting and seeing it rather than just reading a report made it easy to digest.
K. xxx
I am clearly , a fuss pot !
I ask for , and get , the radiographers report ...and then scrutinise it and compare it with earlier ones .
I once tried to follow the oncologist as he showed me the ct scan on his screen !
Hilarious ! Could have been the surface of Mars !
If you want them , like notes , they are yours .
Sadly, not in my area Angela and it's a battle for many women. I hope that situation will change but it's a team decision and that's hard for patients. Some, however, have individual consultants who are willing to listen though not with the glamour. Sometimes, all that glitters is not gold. Xx
Thank you all for replying, I think you are probably right about not making head or tail of the pictures but maybe getting hold of copy of radiographer's report is worthwhile. My onc doesn't even copy me in on letters to GP so it makes me worry he is not telling me everything although maybe I am better off not knowing ....! Xx
In England you are entitled to receive a copy of the letter to your GP. My GP in London said it is the default and I'd have to opt out if I didn't want to receive them. If you want a copy ask your CNS, oncologist or GP and they will organise it.
Having said that I feel my letters from the Royal Marsden are a waste of paper and print as they don't say anything I didn't know and more than half is repeated data from my diagnosis. I'm thinking of opting out to save the secretary some work.
Interestingly in Wales patients don't receive copy letters. My GP in Wales sometimes swivelled his screen so I could read them and my Welsh oncologist used to write detailed individual letters about me including a summary of some of my hobbies and interests which we'd discussed in the consulting room. It really was a very thorough and helpful document for my GP to know generally how I was getting on and I was quite overawed by her caring interest in me.
My new London GP rings me if she hasn't heard from me in a while and rang recently to ask how I was when she read the letter to say I had some progression. I'm lucky to have such a caring and thorough team.
Hi
You can get copies of reports from your GP -I got my MRI scan report from my GP - fair enough I couldn't make head nor tail of it at first but after a little searching around it gave me an insight into what the consultant had said as I'd forgotten most of what she had told me and wanted to know in more detail. That worked best for me as I wanted to understand more about what was found. I also got the pathology report which in my case proved useful too.
My onc never offers to give me a copy of radiographer report and I always ask for it every time, along with histology and surgery reports. It is the only way that I can digest what is actually going on, as I never take in properly the verbal sentence or two that they give you otherwise. I also prefer seeing on a report details like 'bones clear, liver clear' etc, rather than someone saying bland like 'it's all fine on the scan'. If you see what I mean. Works the same way if indeed there is something visible on the scan.
They do have to give you these reports, so just ask (or sometimes insist nicely) and they will get them to you eventually. If you forget to ask during an appointment you could also contact your CNS to chase on your behalf.
I personally don't ask to see the pictures because I can't make head or tail of them! So it is a matter of finding the way to get the right level of information in the form that works for you.
Hope you have more success in getting the info you need.
Best,
Judith
x
Hi Judith .. I have asked a number of times and have been refused. I was told that the procedure was to put the request in writing but that my oncologist had the right to refuse and apparently, it's her stance to do so for all requests. X
Tina, that must be so frustrating. You definitely have the right to see your records. Doctors can refuse an informal request (which is what sounds like your onc is doing) but they cannot refuse if you put in a formal one - see here for example: nhs.uk/chq/pages/1309.aspx?.... If you have to go the formal route it looks like it can take ages and they might even charge you (which in this instance would be completely outrageous however). Maybe you could ask your CNS or call someone like Macmillan to get some tips on how to get hold of these things in the most straightforward way.
Good luck with getting the information that is yours by right.
Judith
x
Hi Judith ..
It is frustrating because I get no information and think all sorts. I did have a long conversation with my CNS who told me I wouldn't get the information but she did say to speak to my hospice consultant. I did and I learnt that I had low grade advanced disease with high grade features. My GP gave me a letter which said I had advanced progressive disease with areas of disease in the small bowel mesentery which I didn't know about either. Considering I have progressive advanced disease with symptoms, I am not in treatment. I have no blood tests because CA125 is not a marker and on my last appointment, I asked if a scan showed further progression, would I have treatment? I was told no. When I asked if there are future therapies for me, and is carboplatin an option, I was told that it was a possibility. I didn't have a scan because I said there was no point in taking rays if the report would mean nothing and the Registrar agreed. I had no physical examination either. I can't see any point in my appointments at all though I'm not saying I'm right in thinking that.
It is very confusing and I have been very upset about it in the past. I'm in a happy place at the moment though despite this.
Thank you for your information. I didn't think of MacMillan. I'm going to call in to see them when I go for my appointment later this month. I'll give in my formal request then too if they think it'll help at my particular hospital. Xx
Gosh Tina, you are doing so well to be in a good place with this story going on. It sounds complex. If having the records in writing means that you can make better sense of what is really going on and that this will be helpful to you, then it's something you definitely can pursue through these avenues. It won't shed any light on onc decisions re treatment options but might be a step to better understanding of the underlying situation. Wishing you all the very best. Take good care - and stay in that good place.
Judith
x
Hello,
I didnt see Ct results for years only verbal explanations but i have found out that u are entitled to see or even take copy of Ct results home. I have last 3 copies at home.
You just need to ask
Love zuzi x
I was once shown my scan a year or so ago, and was pleased to be shown, but have not been shown since. Usually they just tell me in clinic briefly what they show, and sometimes I get a copy of details in a letter afterwards.
Di
My oncologist brings it up on the coputer screen and points to things. It's not too clear to me but I'm learning ! And I like to know everythign so I do appreciate that she shows me.
I had my cancer treatment at The Christie in Manchester and they never showed me any scans at my checkups, even though I asked to see them. The doctor just looked at me like i was daft and asked why I would want to see them. It seems most hospitals or doctors still think patients should not be shown these things coz we wont understand them. But the idea is for them to explain them to us! I was watching Casualty and Holby City the other day and the doctors in that were carrying around small computer things and showing the patients their test results and scans on them. But ive never seen anything like that in a real life hospital. Insist on seeing them and dont take no for an answer. Its your body and you want to know whats going on inside it. Tell them you'll ask for legal advice about getting to see them. I got to see two of mine but only because I was involved in a case against my gynaecologist brought against him by other patients. They were sent through the post with my medical records so I had no-one there to explain to me what some of the pictures were showing. I had to look up stuff on the internet.
Hi Madeline. The only scan i have seen transvaginal ultrasound at the start of my journey. I know from experience though that MRI scans and CT scans are a series of small cross section pictures and probably wouldn't mean anything to us. The consultant radiologist will have reported fully on them though. Ann xo
Results after scan
Kidney Scan
CA125 rising but PET scan clear
PET Scan? 
