So many times I have requested my pathology report but I’ve yet to see it let alone have a copy. I would love to see a copy as when people ask me what sort of bc I had, well I dont know. All I was told was they found a few cancer cells 1cm lump Grade 2 stage 1 , manage to get it all out with WLE and doubt it will come back so I assume I had DCIS but I dont know.
It’s a year since I was diagnosed and phoned my bcn 2 weeks ago to as hadn’t received an appt for annual mammogram. Also again requested a copy of the path report to be posted to me. Received appointment for mammogram in the post but no copy of path report grrrr.
Is it worth contacting PALS as I’ve run out of people to ask.
I was told the surgeon sec could get the path report for me. Some require a form to be filled out. It might be worth giving her or your onc’s sec a ring. Mine was more than happy to do it, but at the time I wasn’t ready. Dx
Hi I arranged an appt with my BCN to go through my pathology reports. She said she would read them through first and if she was able to explain all of the detail to me would do so other wise she would make me an appt with my Onc. I had a very helpful session with her and was also asked if I wanted copies to take away. Having your reports and understanding them and the terminology used can be a bit daunting. Hope this helps. Jackie
I had to ask many times for my pathology report. I eventually got it from the secretary to the surgeons. After weeks of trying, I found out that they were arranging to have a letter written to me and said that it took a long time because it had to be sent away for typing, come back for signing etc. When I stressed again that I just wanted a print off of the actual report, they said it was an unusual request(?!). I received it within a couple of days after that.
I didn’t have anyone to go through it with me and some of the terminology is confusing and it is scary to read. I suppose I should ask one of the medics to explain it to me fully.
The other thing I have found on here is that some people are receiving copies of the letters sent to the GP. I have never been offered this.
Hi Ann
I agree that the whole info sharing process after a cancer diagnosis seems to be hit and miss. I was very happy with the treatment I had nearly 9 months ago, but I was someone who needed the details of my case and didnt get it very easily. I never got anything in writing, but about six weeks ago I asked again for a copy of my path report from my BCN and got it in a couple of days with a note to call her if I had any questions. It was quite technical in detail but it gave me most of what I needed(I found out Id had invasive as well as lobular!!- a surprise to say the least)
Its a difficult area to get a balance-some folks dont want to know-others need the tiniest detail explained. But I think the professionals need to learn how to guage that and offer info accordingly. I started a thread some months ago about this and there a lot of different ways to deal with this-some better than others, such as taped consultations.
Thats why I found myself on this site and its been a brilliant source of info.
Keep up the good work!
Cathie x
I saw everything in my file quite by chance. I was taken into isolation a week after I finished Taxotere and the file had to be sent through from another hospital (I was treated at 3 places if you include the isolation situation). It was left on the table in the room by a junior doctor who was looking after me, so I had a look - as you do -
I wouldn’t really have said there was anything in there I didn’t already know as my oncologists were very thorough at going through things with me. I was originally told I didn’t have cancer and found out after I had a fibroid removed. The surgeon’s letter to my GP said I was a bit shocked after he had to tell me, so could someone please contact me to find out if I was feeling OK, which I thought was kind of him. He had also put on my file that in his opinion my stress levels were low!
Re letters sent to my GP by Onc and surgeon I always received copies of these. I was asked when I attended the recall for my routine mammogram if I wanted these and had to sign a form stating I wanted them. Think my poor long suffering Onc sighs when I walk in as I have the latest letter highlighted for queries but these have always been answered fully. Guess I am someone who wants all the info.Jackie
Hello I got mine (path report after surgery - thats the important one as examination is more detailed than the biopsy, I think - there is more tissue anyhow) through my BCN but she had to get clearance from the Consultant I saw first, who was the surgeon.
I’m still not clear if we get someone who is is overall charge of our case. There is a Care Pathway for BC and all hospitals have their own that they have developed I think, but I worry that sometimes we fall through the gaps in this. I did with some of my meds that should have been stopped and restarted later. Cant help thinking this is a flaw in this present system, though its good to be passed on to the specialist for each type of treatment or assessement we need , BUT , it leaves so much relying on the system of management itself.
hope that makes sense !! Also - I was getting copies of all letters from hospital to my GP , so thought , thats fine , I dont need to do anything. Then - at a crucial point of course !! - I didtn get 2 of them, and had to request them, through BCN. Now I"m left thinking - Is there a procedure I should have followed in order to make sure I get each one, or do I have to request it , EVERY flippin time I go for an appointment. Need to sort this next time I go.
No-one offered to send me copy letters either, Ann - so I asked for them. The study I’m in send the letters to me and a copy to my GP but I could have said that I didn’t want her to be copied in.
With regard to my pathology report I asked for it the first time I saw my onc saying something like will you copy it now or send it to me later this week? He sent the clinic nurse to copy it there and then. There were a couple of terms I wasn’t sure about but in the end I checked them with my bcn the next time I saw her.
My GP refused to permit a referral for counselling near the end of my Herceptin treatment, so my Oncologist went ahead and referred anyway and the Consultant Psychologist didn’t copy the GP in. She said it was fine to keep the counselling private between us as my GP was so against me having it.
There is information on your right to see your medical records on this website: yourprivacy.co.uk/YourMedicalRecords.html
I asked my oncologist for a copy of the path report which he sent to me and I also now get copies of the correspondence he sends out concerning my treatment.
Hope you can sort it out.
I think I must be a bit of a coward (or burying my head in the sand) but the last thing I want to see is my pathology report… whilst it has been discussed with me and obviously I only remember certain bits I think if I saw it in black and white it would totally freak me out and knowing me I would dwell very much on the ‘bad’ bits - there are quite a few in my prognosis…
We are obviously all different in our reaction to news but I also want to make sure I get everything going to fight this cancer - does seeing it written down help in that respect?
saffronseed you’re not a coward we are all different thats all. I have wanted as much info as possible since day one, sometimes it is hard but thats the way I cope best by having info.
My Onc has been good and copies me in on letters to GP etc and gives me scan reports etc when I ask.I think you just have to keep asking and possibly go through the secretary or if still no joy PALS.
Cherub thats awful about your GP,b I think I’d seriously think of changing. Glad you got referal through hospital and hope it helpd.
For those of you who do get a copy of your pathology report I have put for you below the link to BCC’s publication “Understanding your pathology report”, which I hope you find useful.
Hiya, thanks for the replies. Eventually went through PALS and then got an email from my BCN offering to meet up to explain my path report. so will arrange an appointment.
Saffronseed you are def not a coward we each know what we can deal with.I echo whatJulie said. For myself I really needed to see my results in print, I think some of us have that sort of learning style and despite BC this continues I sat this as an experienced trainer. The choice is yours and perhaps if you have an empathetic person ( BCN or Onc ) to talk you through this will help. I wouldn’y have wanted my results to come through the post.
Cherub after experiences with GP glad to hear you got a good counsellor can you change your GP? Do you still have confidence in him/her?
Good wishes to all and remember your medical history is just that yours. Love to all Jackie
I am wondering whether to ask for the letters that have been sent to my GP. Do they just contain facts, like the pathology report, or do they contain opinions for prognosis, etc?
