I’d been asking this question for the last 2 months or so, and I finally received my path report yesterday. Well, they had to give it to me really; in the middle of my meeting to plan my surgery, I was told that my tumour had been 50% BIGGER than I thought it was!
Now, I have to say that there would have been no change to my treatment plan, but I have been doing six months worth of neoadjuvant chemotherapy under the impression that my tumour was 1.9 cm when it was actually 3cm. Basically, my ultrasound gave the 1.9cm measurement and my MRI gave a more accurate result (not surprised at this) and someone forgot to tell me. Not really something you want to find out several months down the line on the same day that you are discussing your surgery!
So, the moral is: get a copy of your path report early on so that you know exactly what is going on.
I am appalled at how difficult it is for patients to get hold of their path reports in this country. If people don’t want it then fine they can turn it down, but it SHOULD be offered to everyone as matter of good practice.
It’s all so damned patriarchal and doctor-knows-best.
My body, my health, my cancer - as an NHS patient I want to be able to access all of my medical information with the same ease as a private patient.
My surgeon gave me mine as a matter of course without me having to request it and it has enabled me to fully educate myself in what kind of bc I have and what options are available to me.
What are the medics scared of? That we might actually empower ourselves and question their judgement?
I agree that the path report should be offered to anyone who requests it. I guess why many don’t request it is because they don’t know it exists and if they did get a copy, a lot of people would have trouble making sense of it, even in this day and age of access to information. Maybe if they could produce a patient friendly version which details the important bits which the lay person could understand would be useful and if the patient wanted the proper version, fine too.
I saw mines quite by chance - when I was in hospital isolation for a week last year, one of the junior doctors left my surgical and oncology files on the table in my room. I had a quick shufti to see what was in there, but there was nothing I hadn’t been told of. Both my surgeon and my oncologist had written that I was suffering from very moderate stress levels and my surgeon had written a letter to my GP saying I was shocked when he had to tell me I had cancer, so would my GP please contact me (I had already been told I did not have cancer 4 weeks previously and they had informed my GP of this too). There was also a page in my oncology file informing members of the team that I am related to an eminent oncology professor who heads a cancer centre - apparently some of the medics treating me used to work with him when he was a Consultant.
I’ve not yet seen my pathology report but intend to do so. My level of frustration at how we’re treated in some hospitals is immense! My own experience exemplifies all that’s not good within a culture that seems to demand the patient is no more than that … a patient rather than a partner who can express their own wishes.
At the beginning of February I requested that I’m copied into all correspondence. This was met with shock but compliance. I have recently discovered from my GP that correspondence has taken place which I’ve not been copied into.
I stated also that I wanted to read my files. I discovered that there seems to be a long and convoluted process to go through. Because I was on chemo at the time I didn’t have the energy to do anything … I will soon though.
I’m in the process of changing hospitals and am going to be seen at the Marsden. How refreshing it is to read their patient booklet that encourages us to be included in information.
I daresay my experience is not unique - it makes me so angry that we’re considered to be incapable of taking on info and making decisions!! Tell that to Pink October!!
I managed to read my path reports when the nurse left them by my chair whilst I was having Herceptin. I had a good read and was surprised to see one page headed ‘Inflammatory breast cancer’, I was told I had IDC - although I have not had any of the normal symptoms associated with IBC. It also said Vascular / Lymphatic invasion present, but I only knew about my lymph nodes being infected, nothing about the vascular invasion.
I know it sounds absolutely ridiculous considering the circumstances, but I am scared to bring it up with my Onc - I find him rather intimidating and he makes me feel as though I have no right to ask him anything.
I asked my breast care nurse if i could have a copy of my path report and she told me yes, but i would have to contact the access dept at the hospital and they would probably make a charge but she also told me that my gp should have a copy. I phoned the surgery, asked if i could have a copy and the secretary there said she would check with the dr but could see no reason why not. Received a copy same day at no cost.
Cherub, yours in a league of it’s own! I know we would all have done the same as you if we had a chance! Good on ya.
Cathy, I think your idea of a patient friendly version is a good one. Docs probably think we would ask EVEN MORE questions if they gave it to us…. but, maybe if we had the info in black & white we might need to ask less…. Don’t know.
Msmolly, ‘hear hear’ to what you’ve said too!
Gillian, I know what you mean; I was too tired during chemo & decided to let it slide. Regret that now…
Tracy, please don’t be intimidated. It really sounds like you need to get this all clear and sorted! If you can’t trust your BC nurse to back you up with this, do you have a PALS group at you hospital?
I do just want to be clear that I didn’t start this thread to complain about my hospital. On the whole, I am happy with my treatment there. But I do feel very strongly that patients should have access to their data if they want it. No one actually refused me my notes, but it was clear that they weren’t really used to being asked for them.
A couple of people have said that they’d managed to sneak a look at their notes - this is what bothers me! People shouldn’t feel uncomfortable about such things - they are YOUR notes!!
This whole area should be an advocacy issue by patient reps - be they charities or PALS.
Tracey - your body and your life. He is just a bloke who decided to become an oncologist instead of an accountant or a bank manager - that’s all.
He’s not god.
Imagine him stark naked - it is a good way of putting the intimidating into psychological perspective.
Quite right msmolly, this is what i always say. Doctors are no different from ourselves, we all have the same basic needs and doctors have to SIT… on the TOILET just as we do, so don’t be frightened of them. PLEASE ASK.
Take care, claire x
Well, well, well do I feel stupid! I had a mastectomy on 1st November last year. I have never seen, been offered or knew existed a path report. I have no idea what sort of cancer I had except that it was oestrogen postive. I found this out by accident in July this year.
I did ask that I was copied in on any correspondence, but haven’t been. I feel stupid and let down.
I feel uncomfortable with my Oncologist, we seem to be talking at cross purposes most of the time.
BUT reading your comments has got under my skin and I intend to get a copy of MY path report. As you say it’s my body, my cancer.
Many thanks for starting this, you have set the ball rolling!
Hi: Wow what a thread! I asked for my path report and it was sent to me next day. Have done some research and have questions for my onc - Prof Grieve in Coventry in case anyone else is with him. He has great reputation and is very nice but they all treat you like idiots. The worse thing he said to me was that I had the final sanction on what they do to me, they can only advise and it is up to me. My body, my cancer.
I put off having my chemo started until I had been on holiday in May - I think they have now identified me as a member of the Awkward Squad. I mentioned this to one of the nurses doing my poison and her response was “Oh that’s what the asterisk on your file means!” Like a girl with a sense of humour. There will be a couple more asteriskas before we are finished.
I finish my chemo on 25 November and want a rest before the chip fryer (rads). I think the usual period is four weeks which brings us to Christmas Day. That is not what I want from Santa so can see another interesting discussion with the Prof.
My BCN did say to me - never stop asking questions, you need the information to satisfy yourself you know what is going.
The mental image of your onc on the loo is a good one - well it does put him/her into perspective!
Keep asking and insist on knowing what they are doing to you.
My surgeon produced a simplified version of my path report immediately after my op.He said to study it and ask if I wanted to see the full thing which I did.It was just passed across the table and the bcn went into another room with me and went through it.I was told I could have a copy but just kept the simplified one.I am lucky in the team I think.
valxx
I had the whole thing explained to me by my onc, I didnt know what she was talking about though, my hubby was there to take it all in bless him.
whenever the hospital sends a letter to the gp, we can opt to have copies of such letters sent to us at home, so i got mine automatically, the wierd thing was, it was the gp that didnt get his copy and he had to pester the hospital for it.