I thought I would point out that you are all entitled to take copies of the radiologist scan report that the oncologist refers to when discussing scan results. Our Professor freely hands them out on his clinic and if we get one of his sidekicks who may be less forthcoming then we ask for a copy which they always oblige. It allows me to study the scan results in the comfort of my home and google any medical terminology to convert the report into layman terms. I am sure you have all been debriefed on scan results and then when you get home you forget half of it. The radiologist report here at the Christie is a single sheet of A4 so we are not talking about a dossier. I keep them all and compare each one to the previous so you can see the changes that have taken place.
Scans: I thought I would point out that you are... - My Ovacome
Scans
Thanku so much for this useul information. I will certainly be requesting one from my next scan
Ann xx
Hi,
I don't think everyone can get this, I did ask for a copy of my scan results and my Oncologist said an outright "no" when I mentioned that I have had a copy in the past he said "that was a one off" so I then replied "I have had copies more than once" and he shrugged (but still didn't give me a copy, (I even filled in a request form but with no results) so I think it depends on what hospital you go to or maybe the Oncologist you have (my Oncologist is a senior consultant) and my hospital like Christies is deemed as a centre of excellence.... but because I go to a hospital that is a different health trust to my GP (out of the area) she doesn't always get the results either. 
Best wishes love x G x 
It must be down to the individual oncologist, our Professor who is head of dept freely gave them out and whenever we see one of his colleagues they dont offer the report but when I ask for it he simply photocopies it and hands it over without quibble. Maybe its just us at the Christie are the lucky ones.
I am guessing you are under Prof Jayson like me. Its one of the things I really appreciate about him I find some of his colleagues a bit more evasive but I also like to see copies of my reports but I can't say that I have all of them
Gwyn, you have a legal right of access to all your medical records. All you have to do is request them in writing from the records clerk - you might get charged 10p a sheet.
I get all my scan reports, blood tests, etc., as a matter of course but at the hospital where I was originally treated I got nothing. So I paid for them.
Centre of Excellence has nothing to do with it, sadly. This is not a guarantee of good care for ovarian cancer. It simply says that the hospital meets certain standards in common cancers, e.g. breast, bowel, etc..
There was a study in Glasgow a while ago in a cardiac unit that showed that patients who had access to their records did better than those who do not. Nobody knows why, but now routinely in many hospitals case notes are left by the bed.
Hope this helps you.
Cx
Thank you Chrystyn,
I thought this was the case, and like I said the hospital has a request form in place to do this, but even though I filled it in...nothing!! ... and I am not one to make a fuss so left it... but at the same time I am a bit peeved ...I even offered to pay but I felt the door had been well and truly closed...I even started to think he was hiding something from me but then thought this was silly...but I like to know everything as I feel it is my life and makes me feel more in control even if it is bad news... I can deal with things better if I know... it is the unknown I find hard to deal with...love x G x
Dear Crystyn,
Do you mind my commenting on the research study you mention? I'm not sure that research in Wales into cancer survivorship agrees with the findings in the cardiac unit in Glasgow. Here at Merthyr Tydfil there is evidence that patients can survive cancer for years despite poor lifestyles and little interest in their condition. (I can't find the source at the moment but believe it was done by a Lead Clinician for Cancer Services in the last 10 years). Research and statistics can be rather misleading - and I say this having worked in a research-intensive environment for 20 years.
Thinking of that research in Glasgow, I'm wondering about the research methods. Did they use opportunity, random or a self-selecting sample group - by which I'm asking whether the sample group accurately reflected the whole population. Results of a survey could be very skewed if they just used opportunity sampling and studied the patients who asked for their records as those patients are likely to be articulate, confident, and interested in furthering their knowledge. We're also aware that heart disease is particularly prevalent in the lower socio-economic groups which have a propensity to poorer diets and lifestyle, and academic under-achievement, whereas this isn't the case with Ovarian Cancer.
It would be interesting to look at a study on the survivorship of cancer patients. Sadly I rather think most of us with Ovarian Cancer are living with an indiscriminate disease that will take its course whatever we read or do but the benefit of lifestyle, diet, exercise, knowledge does help us feel more in control and better about ourselves and that's an extremely important issue.
I must see if I can dig out that cancer research in Merthyr Tydfil. It made interesting reading.
If there's a message here it's to be happy with who you are are what you're doing to survive with this disease.
Loads of love xx Annie
It was a small study done in the 80s. Because the cardiac ICU and post operative ward were being moved around for a while case notes were left with patients and staff noted that bizarrely these patients seemed to do better post operatively.
They did a study that confirmed the observation. It was limited to patients who had surgery.
The theory is not so much that all the patients read and understood their notes, but that the culture of openness helped in a small way. There was no follow up to see what happened after the patients had been discharged.
I wasn't suggesting that it applies universally, just noting that having access to your medical records can in certain circumstances be beneficial.
Also I recently got a lecture from a statistician friend about single source statistics - the jist of it was that statistics from a single source can be unreliable and cannot be considered to be definitive until confirmed by other studies.
I think that much depends on personal preference and whether or not you have the capacity to understand your records. In the clinic where I am treated you get what you want, which I think is the ideal.
Hi Chrystin,
I can't help but agree... information and openness is important, whether or not you understand the notes is another thing...I have a consultant friend that will explain things if I am not sure about something...but to keep patients in the dark because others don't want to know is ridiculous, I wouldn't ask if I didn't want to know... when I was first diagnosed there was a lady that kept on saying she was going to die, I asked her what stage she was and she said "oh I don't know,I didn't ask, I don't want to know" (in her case I think it was worse not knowing) she was a nervous wreck...but still told them not to tell her anything....my consultant is a senior man that looks at me in disbelief if I ask anything... as if I don't have the right to ask...I really don't know how to get passed this...without feeling bad myself (I don't like complaining) I already feel indebted that I am still alive...love x G x
I found the more knowledgable I appeared the better the brief from the onc. Rgds Paul
I had a friend from the East End of London. A Teacher. When he visited a hospital he took a Guardian newspaper with him so the medical staff didn't judge his academic ability him by his accent.
I think much needs to be done - and particularly with the older clinicians - to ensure they all treat everyone with respect. Working in a medical school over a number of years I've seen some horrendous cases of ignorant and patronising attitudes amongst senior staff.
Gwyn, ask if you want to know, complain if you need to, and demand a clinician with a better bedside manner. You owe Mr Colourful Oncologist nothing.
Loads of love xxx Annie
I'm sure under the freedom of information act they are obliged to give these to you so might be worth checking out.
I can't say I've ever been interested in looking at my scan results or reports. Recently I was copied a letter from my oncologist to my GP following diagnosis two years ago. i'm glad I didn't see it at the time. I don't keep any reference papers to my hospital visits and always throw away the apppintment card prefering to keep a note in my I-Phone. all part of my ostrich approach to Ovarian Cancer which siits me fine! A chaqu'un son gout. (applogies. I hanen'tfoind out how to switch my keyboard to French??
Annie, to find the international options hold down the letter you want. The options will appear above it and you drag your finger up to the one you want and release.
Comme ça! À chaq'un son goût.
L xx
That is absolutely brilliant Linda. Thanks so much. I've learned new things about my I-Phone from Gill's grandchildren and now you. I shan't look back!!!
Any hints as to how I find the international keyboard on this site here? Usually I type the words into word and paste complete with accents.
I also haven't mastered how to use the whole range of emoticons on here. Need some instruction from you! xxxx
Thanks - this site gives us so much!
Totally agree Annie, wouldn't want to see mine thank you! I hate getting the copy letters as the terminology they use is frightening and I have to sit there googling it all.
I deal with things in my own way, which means not knowing every little detail. Although I do agree if you want this information you should have access to it.
Linda xx
I don't bother too much so long as I understand the gist. I'd rather spend my time reading or watching something more enlightening than medical reports. xxxx
Interesting discussion as ever, my fully reported scan result was still not uploaded when I was last in clinic so my onc got a verbal report which amounted to "a good response". I can never see the report on screen very well anyway so asked if I could have a copy. Onc was very happy with that and referred me to his secretary, she was also happy and printed them off while I was on the phone - however they have yet to arrive so following up today.
We all deal with things in different ways and as I spent of lot of my professional life reading notes and scan reports for others I certainly want to see my own, the patient part of me wants to know everything so I can visualise it and fight it but that's just me, the ostrich in me took 6 appointments to be brave enough to ask about my longevity or lack of it. Answer was as vague as you like so hey ho forward we go.
One day at a time with as much laughter and positivity as I can muster, making plans and getting on with getting on.
Hugs to all whatever our methods xxx
Hello,
I must admit I dont ask for any copies. I accept that the consultants and professors are the experts in their field, they have given me good quality of care and I am in remission thanks to them.Through out my treatment I have gone with the flow. I agree with Annie and may be I am a bit of an ostrich. I have been copied in to letters to my GP and to actually see things written down gives me an odd feeling. I too have destroyed a lot of my paper work kept the pages I feel are important and relevent that amounts to about a dozen. These people have trained for years to do their jobs and I am happy to put my trust in them.
Thanks to them I am celebrating my 54th birthday today having been told my scans were all clear last month. I dont need to see a report the oncologist telling me that was enough. I do however appreciate that some people will want to see everything and I think that is very brave of them.
Best wishes
Lorraine
If you wish to see any of your notes and they are not forthcoming a friend of mine got in touch with PALS and they arranged for her to have her complete file in the privacy of a room and she was able to copy any of the reports she thought relevant to her case.
As for scan results I always get mine Dr Hasan's clinic at the Christie. I find them most useful as I can see at a glance how the tumours are responding and by how much. In clinic you get the nitty gritty but being able to compare to previous scans I certainly find extremely helpful.
Gwyn get in touch with PALS should be in every hospital I believe.
Happy Birthday Lorraine
Best wishes love and hugs to everyone.
xx Hilary
Hi Hilary,
Yes we have got a "PALS" but I don't like to make waves (see comment further up) I feel somehow indebted that I am still alive, and I know I should be forthright and sometimes I am...but then my oncologist squirms.. then I feel really bad that I have put him in a position (daft I know) he hides my notes as if they are gold haha bearing in mind that I only see him for three minutes anyway ...I agree with you that comparing scan results is so useful ...I have had a copy of about three results in the past ...but he then said it wasn't usual to give me a copy and flatly refused..I will bear the PALS route in mind though (if I get desperate) thank you. Love x G x
As far as I know PALS would not pass on the information that you wished to look at your records to your oncologist. It should be confidential. Worth checking first though. Never mind the waves swim through.
Love Hilary xx
Hi all.
As most of you know by now(!) I am a retired GP. Yes, Chrystyn is right. Every patient is legally entitled to see their medical records if they want to, if they put their request in writing. Many cancer patients may take the view they would rather not know too much about their records - it is a matter of what you want, how much info you want to know and what you think you can cope with. Some doctors may try to protect you because they judge you will not like what you see. But if you feel you can cope with anything, then you have every right to see your records.
I am afraid I am ignorant of what PALS is; maybe we don't have it in Scotland. I have asked for copies of what I want from my records, usually scan results, and initially the pathology results, and was given them, sometimes after a little difficulty, but not much.
But don't ask for this info unless you are sure that any info you might get is something you can cope with, or else it may do you more harm than good. However I don't think patients ask for copies of records, mostly, unless they think they can cope.
A doctor might think you wouldn't understand the info, but that is a bit patronising, as you can always ask them or someone else for an explanation.
Ultimately, I guess you could use a lawyer to get the info you want, but really that should not be necessary.
Eileen xx
Hi Eileen,
Yes you have got "Patient Advice and Liason Service" ( PALS) in Scotland as it is a NHS advisory service for patients.
I agree that I feel a lot of senior consultants try to protect their patients, my oncologist is in the same age bracket as myself (sixties) and I understand that there are a lot of patients that would rather not know anything about their condition, but I am not one of them, I made it pretty clear right from the beginning that I want to be told even the worse scenario, I just think he finds it easier not to discuss details with his patients, regardless of their intelligence and only spends three minutes in consultation that includes examination, discussion and small talk (usually about his holiday) in fact if I ask anything that is too blunt he squirms so I then let him off the hook because I end up feeling sorry for him, he is however very intelligent and is very good (I am told) at speaking in seminars and conferences, but not so good one to one, I stick with it as I am where I am (in remission) so I am grateful for that.
Love x G x
Hi Gwyneth. Sounds like you are right about him - he just prefers not to talk about it! Anyway you are in remission, which is the most important thing.
Love,
E xx
Just one thing to add.
Whether anyone wants to see their scan or not, there are times when you need to check that SOMEONE has seen it. When I was first being diagnosed, I had an Ultrasound, followed by an MRI. I was then asked to attend for a CT scan in the morning before my next Gynae Onc Outpatients appointment in the hope that the results would be ready in the afternoon. Not surprisingly, the results were't available in time.
There had been a suggestion on the ultrasound that I might have secondaries in the spleen. My husband asked about this when we attended the pre-admission appointment, my surgery having been planned for the next month. The clinic nurse said she thought the CT had ruled this as unlikely.
Lets just gloss over the next bit and say that my husband was working at the same hospital and I was able to aquire the CT report and discovered that there probably were secondaries in the spleen. This was flagged up and discussed at the next MDT meeting and the whole plan changed. Instead of the surgery taking place the following month, I was admitted for biopsy and drainage and started 3 cycles of chemo before the op and had 3 more afterwards. By the time I got to the op almost all the tumours had disappeared.
I do like to think that someone would have referred to the CT at some point but sometimes I can't help but wonder what the outcome might have been if I'd been opened up at the time originally planned.
Having said all that, I'm in Annie's camp as far as not knowing to need to know everything all the time. However, if you find yourself paralysed with worry anyway, it is probably best to find out where you stand.
Love and best wishes
Mary xx
Today
2 weeks of hell
False hopes
Was already indecisive about laparoscopy or "watch and wait" with follow up scans, and now a new twist has been thrown in the mix.
