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Initial Diagnosis - Written Confirmation
Thu, 12/02/2009 - 14:41
#1
Hi, I am looking into what patients receive when they are initially diagnosed?
I understand some breast cancer units advise patients verbally with no written follow up, with other units advising patients verbally and following this up in writing.
Would you be able to let me know how the information was conveyed to you when you were initially diagnosed?
This is part of a wider project which aims to take the best examples and promote those through breast units.
Thank you
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Hi Boobytrap
I was advised of my dx verbally and then in writing. Written confirmation is good as you don't remember everything you are told.
Initially I only received verbal confirmation.
After surgery I was given a copy of the report that was sent to my G.P
Hi Boobytrap
I only received verbal confirmation. I requested to be copied in on letters to my GP, so then I received copies of letters sent from Breast Unit to my GP.
I'm glad you brought this up, Boobytrap, as I do think it would be a good idea for breast units to consider sending patients a standard letter outlining the diagnosis and proposed treatment plan (and any other points for consideration). We get written confirmation for most major things in life, whther it's a mortgage, rental agreement, job offer - so why not have something in black and white when you've had a diagnosis and require medical treatment , especially given that your head will have totally emptied itself upon hearing "you have cancer"?
Hi
I only ever recd my dx and treatment plan verbally. The only letter I had was after FNA to get appt for biopsy.
I only got my diagnosis verbally on the same day,after having all the tests done.
Alli x
I too only got my diagnosis verbally, i was not aware that you could or should receive written confirmation, this is very interesting to know.
Verbally only. I was given my path report after surgery because the surgeon felt I was "the kind of woman who'd want it."
Hi,
I got dx verbally, followed up by a copy of my path report, then later a meeting with my onc to discuss treatment - this was recorded and i got a copy. Getting the results of my biopsy was the worst bit (so far anyway) I went into the liittle examination room , was told to strip to the waist and then had to wait for what seemed like ages while there was a lot of whispering in the room next door. eventually a surgeon (i think) and BC nurse came in to tell me the results of the biopsy by then I'de guessed it wasn't going to be good news it was horrible.
cheers
caroline
I was given initial dx verbally at the end of a long clinic.The path report was also given verbally though surgeon wrote main ponts on a post-it note[honestly,I still have it]!!!It said 2cm IDc er/pr neg Her2 neg 0/6 nodes affected no vascular invasion.
At a later appt he showed me the report and said I could have a copy,but I said no thanks,didnt see the point.I do agree that there should be the same attention for all of us.
love Vx
Hi Boobytrap,
Before answering I'd like to know what the "wider project" is, who you're working for, and why.
Doesn't seem an unreasonable question!
L.
Hi boobytrap,i was just wondering how far in to your treatment are you? and did you receive confirmation through letter or virbally or both
best wishes Mel x
I was given the diagnosis verbally and this was reinforced by the breast care nurse, who wrote it in the folder given to me at the time. I also had an appointment the following day with the breast care nurse who went through the information again with me.
I was given a verbal diagnosis of DCIS and they gave me a leaflet explaining it (from this site) along with a copy of the letter booking me in for surgery and my consent form.
I was given diagnosis verbaly no other information given told i had appointment for the next week with surgen and this would give me time to think of any questions i might have, was not impressed by this, when diagnosed with any form of cancer you need imediate answers.
Hi
I am so pleased you have brought this one up. I was diagnosed in October 2007 and although I specifically requested that I be copied in on any letters etc. I received nothing. In September 2008 after a bit of badgering I received copies of letters to my doctor plus pathology reports. There was nothing addressed to me. It worries me that there might be other correspondence that I do not know about.
I agree there should be some sort of standard letter setting out the diagnosis and action plan.
Hope this is of some help if you need any further information or help please let me know.
Lynda xx
I never received any written information from the consultants about my specific diagnosis. I seem to recall that my surgeon told me what type of cancer it was the day after surgery, but I didn't take it in or remember it. I did know that I was triple negative, as that was mentioned in relation to not getting hormone therapy.
I had 6 months of chemo, then rads and on one of the visits for radiotherapy, I was given my file to take from one department to another... so went into the loo and had a quick look! And I then wrote it down, so that I'd remember... Invasive Ductal Carcinoma, Grade 3, but no spread to lymph nodes. I reckon that it was my info in my file, so I was entitled, eh?!!
In hindsight, I wish I'd thought to ask for copies of correspondence between the hospitals and my GP, but I just didn't think about it - I had enough to think about at the time.
AliS
Doesn't this just bring into question the whole culture of secrecy within the health services? Doctors writing to doctors and keeping the patient out of the loop? Tests with results routinely kept from patients? Responses to requests to see one's file being treated as obstructively as possible? I've had it all! Even now I am a private patient and it is all technically my property I still do not get access to it. Am I alone in wanting to be involved in my treatment?
I must just be lucky where I am, if I want to know something I ask about it and have been told all the info that I want and had copies of reports. It's a medical thing tho,any other blood/urine whatever tests that have had done in past you never get written confirmation of,isn't that just the way it's done,not that I'm saying it's right,the only letters that I get routinely sent are the ones that tell me of my smear results. I thought that if you requested info re what was on your file these days the docs actually are not allowed to withhold that from you.
Sandra is absolutely right, doctors are NOT allowed to with hold information from you, it's just that some of them seem to like to play at being God. If any of them start to be difficult you only have to say "it's MY body and I have a right to know this" and I'm sure they will back down and tell you. Their excuse always is that they think lots of patients don't want to know anything about their condition - so you have to tell them that you really really do!!
I am still wondering if I should have asked more questions. Despite ticking two separate boxes on two forms stating that I would like to see my medical records I haven't had anything in writing. I was privately treated although the NHS breast care nurses say that they get hold of the information for me if I want it. But do I really want it?
If you are wanting to see your records from your doc and you feel you are being given the run around I would suggest you put your request in writing yourself, send to doc and copy to practice manager and keep copy yourself so you can refer to "my letter of blah blah blah" if you have to send a gentle reminder,maybe once it is documented it is more difficult to ignore and you should get some action. I'm sure I wouldn't have been given half the info that I have ,it's only because I have gone armed with questions and want to know what is going on with my body,have never found it a problem with being told what I've wanted to know,think some docs will just give out the basic info unless pushed for more though as some people are usually happy enough with what the docs tell them.
Hi everyone
I'm a newbie here but just wanted to add my experience to this thread. When I was given my diagnosis in Brighton in January '08 I was shown into a small ,which had been made into a comfortable 'lounge' for want of a better word, by the surgeon and the breast care nurse who had been assigned to me and the conversation was taped as it was explained that there was alot to take in and that under the circumstances it would be difficult to remember everything I had been told. That tape has remained in a drawer for the last year and a half and it was only recently I felt brave enough to listen to it again.
I had surgery in Jan '08 (WLE) and 16 lymph nodes removed. The cancer had spread to 8 so in March I started chemo (there's another story!) followed by 25 sessions of radio which I finished last Nov. I am about to have my 14th dose of Herceptin tomorrow and have been on Tomixifen since last August. Really interested to know how others are coping with this. I am suffering so much pain in my back, legs, ankles etc. Had a bone scan and MRI recently to make sure nothing nasty was going on and got the all clear. The onc now says it could be the hormone treatment which is causing this but it seems to be getting worse and I feel like an old lady of 95!
Jacqui
Hi Folks
On my inital consult when I had all the tests, I was spoken to by an Advanced nurse practitioner telling me they were suspicious, but not 100%. She gave me as much time as I wanted to ask whatever and to explain my fears. Was also given leaflets on bc and contact telephone no in case I needed to speak to a BCNurse at any time.
The following week I saw the consultant surgeon along with a BCNurse who confirmed diagnosis and then both answered All my questions (all 2 pages which I had written down over the week).
Was also asked by the consult if I wanted him to do the op personally or if I minded if another consultant did it.
Then I had more time with the BCNurse who gave me a more written information plus a massive A4 folder (quite unwieldy) containing contact information, where to go for help and support, and place where all treatment plans and meds etc can be documented so's I'll have my own record (if I can be assed to cart the thing back and forth all the time).
In addition to this I recieve coppies of all information sent to my GP.
So far I can say that I have been keep fully informed and the BCNurses and my oncologist have been only too happy to answere all my questions as much as they can and have looked into stuff for me if they were not sure.
Also as a nurse I know it is a part of duty of care that you have access to your medical information ok not add hock but with someone who can explain everything to you as some medical jargon (when its legable) can be a bit scarry if your not used to it.
Don't think this is why I've had all this info though it just seams to be the hospital policy. Does help that the people I'm seeing are all very empathic (I know not all are)
g
I saw all of my notes for surgery and oncology by chance. I was in hospital isolation for a week and a junior doctor left my files on the table,so I had a read of them. There was nothing in there that I did not already know, except that the surgeon wrote down that it was his opinion that I suffered from low levels of stress and was not particularly nervous when talking to him; however, he when he wrote to my GP with the diagnosis he did ask them to ring me as I was shocked when he told me I had cancer.
The oncologists had written in my notes that I am related to someone who is well known in the field of cancer.
i read my notes.
i had to attend for mammo then a week later come for results... cons examined me and said it was inconclusive and id need an ultrasound and gave me my notes to take to the uss dept so stopped in stairwell and read the previous weeks mammo report.... impression... "invasive breast carcinoma +/- lymphoedema"
so wasnt exactly shocked when the cons and bcn told me it was cancer following uss, fna and biopsy.
didnt get anything in writing.
got new primary 3 yrs later and was told by cons radiologist at time of ultrasound it appeared 'most definetely malignant'.... only saw bcn after surgery.... was in research trial for onc where you write a list of questions and get a cd of the replies and the consultation for you to refer back to... mine is 80 mins long.
First I realised I might have cancer was when I got an appt for a biopsy following a mammogram. Got the result of the biopsy verbally 2 weeks later and ask to sign a consent form for WLE op. On the consent form it said the op was to stage the lump. Will get the result of the op this Thursday.
Surprises me how everyone is notified and treated so different for what initially seems the same thing. Some seem to get MRI offered routinely but I havent had that offer yet.
Hi,
I was informed verbally, no letter. maybe if we are written to they think we will all head for the hills, where as if your already at the hospital theres no escape. just my thoughts on it.
I wasn't diagnosed until after surgery as my mammogram and biopsies all came back normal except for the first needle biopsy which came back suspicious. I think the surgeon/nurses were fully aware that it was likely I had cancer but didn't tell me and it was only the radiologist doing the last biopsy who said that things looked suspicious to her and she had only been wrong 11 times in her entire career!
After the surgery I was told verbally I had cancer which was a huge shock. As it was only a week after surgery the surgeon didn't have the full results in front of her - she had to ring the path lab to get them. She wrote down as much infomation as she had about the type of cancer, that it was ER+ and HER2-,lobular invasive, 16mm and that clear margins hadn't been achieved. She had a standard form which she used for all patients which I think was good as it is impossible to remember everything which is said at the time. She offered to copy me her letters to my GP which I received later.
Since then I have had copies of nothing but I haven't asked for anything other than the name of my hickman line infection bacterium as I was interested, this was given by the nurses on the ward to me.
My file was left lurking while I was waiting for my second surgery and I read the whole lot, despite being told not to by the nurses! There was nothing in there I hadn't been told or was aware of. I think files should be made available as a matter of routine but there are some people who don't want to know everything.