I was diagnosed and treated by the same team as my mother-in-law had been a few years previously. She didn't want to know anything much about her diagnosis, treatment. pathology report etc. so didn't ask questions and remained ignorant until the end (her choice, that's fine). The doctors, quite rightly, respected her wishes and didn't give anything but the essntial details in consultations.
However, I'm a different animal and asked lots of questions and in so doing took up a great deal of the consultant's and BCN's time - my perogative. I'm further down the line now and have fewer questions to ask so take up less of their time. As others have said, I've never had any objection to waiting in clinic - if the person in front of me has a long consultation there are probably very good reasons for that.
How do specialists know how much information you want? If they give detail, patients like my mother-in-law really don't want it, and once it's 'out there' it can't be taken back.
In conclusion, if you want to know detail you must ask and ensure you're given copies of all letters and reports.
My particular cancer was referred to in the Path. report as mixed ductal/lobular with some DCIS so, a bit in the ducts and a bit in the lobules. I haven't seem many ladies on here with both IDC and ILC, but there is a thread on one of the American sites.
Could it be this that your letter is referring to?
Nobody has ever referred to it at oncology appointments.
I think you're right they can only tell us the most important stuff.
when I got my results the surgeon said they have 15 mins for an appointment.
He said not as a complaint but an appology for us waiting over an hour. He then spent almost 40 mins answering my questions,
I never complain now when I'm kept waiting. If another woman needs that time to understand then I'm happy to give it to her.
I got more info from reading the letters to my GP and requesting my pathology report than I got from appointments. Part of the reason I think is because you don't remember everything during appointments. You only seem to retain a small amount of the information given and you always think of questions later.
with the info in the letters and path report I was able to answer my own questions using the leaflets on here
it has all helped me make my decisions, understand my treatment, and has put my mind at ease many times.
I wish I was the kind of person who just went along with the doctors without question. But I'm not and looks like I never will be.
My diagnosis was IDC too, but in a letter outlining my diagnosis (I never got the path report) it said "ductal Invasive, Lobular" What's that all about. I mentioned it to my BCN but she didn't have my notes available so couldn't tell me!!
I wanted to know everything, asked for my report four times before I finally recieved it. Only to discover I also had DCIS and malignant calcification. Nothing has been mentioned at any appointment. I understand that I was treated for IDC but would have appreciated being informed about the rest. I'm not a number but feel like I'm being treated as one.
Some people don't want to know everything and that's fine but if, like me, you ask to be completely informed then I think you should be.
all this information might not affect my treatment, but it has changed my mind about the decision to have hormone therapy.
yes i had high grade dcis that wasnt mentioned..i said to the breast nurse i feel like iv been diagnosed all over again hearing this a year later..i wasnt happy.im nearly 4yrs on now so i dont worry about it these days;-) it clearly wasnt so important that they needed to tell us.x
Thank you for replying, that is very reassuring. I think I should have been told about this at the time and also that I had DCIS high grade, I don't understand why we aren't given all the relevant information at the time.
hi i too got my report a yr after and was shocked to see lymphovascular invastion..i freaked out and rang up the breast nurses,i asked why i wasnt told about it,she said oncols dont woory about this too much and treatment is based on grade and stage rather than lvi....she said i was given chemo as i was grade 3 not because of lvi.sarah.x
Just got my hospital report from my gp for insurance purposes and now I am worried. I was told I had infiltrating ductal carcinoma and it was removed a grade two. In the report it says I also had DCIS high grade B5b no-one told me this, I don't know what this means long term, also it says that there was evidence of lymphovascular invasion.i wasn't offered chemotherapy. Any advice would be welcome.