How do you know?

I was given a lengthy written report by my surgeon after the full pathology tests. There are websites that can help you understand those reports, but your surgeon should be willing to discuss them, in as much detail as you require. You can ask for a report if you haven’t been given one, of course. My oncologist also gave me written information on both chemotherapies and herceptin. Most nurses I have had were terrific but one did the ‘prep for the doctor’ by not reading my file and then asking if I was suffering from anxiety. ‘I have cancer, have had a mastectomy, am having chemo, have lost my hair and now have some issue with my heart. What do you think?’. She was somewhat abashed. The majority of brusque medical staff don’t intend to be insulting, they are busy and ticking off their list, but that’s their problem, it should not become yours. 

Hi Temple
 GP should have been sent copies of your first biopsies then Surgeon and Oncologist should have sent copies of each follow up appointment with outlines for treatment regimes

Your surgeon will usually meet with you within 1- 2 weeks of your surgery, with the actual pathology results of the tissue removed during the surgery.  They should tell you the number of tumours, the size of the tumours, the staging of the tumours (from 1-4) and the treatment plan

They 'should' give you a copy of this - but it pays to ask.

They 'should' also have discussed the treatment plan with an oncologist and radiation oncologist as to what ongoing treatment would benefit you best, and talk you thru it.

hopefully you will have a breastcare nurse who will help you co-ordinate your appointments and explain all the jargon

All the best and big hugs xxxx

I had copies of mine but often do have to remind my oncologist that
A) mastectomy and B) no nodes
Basically if you didn't know they would look it up.
The radiation is carelly planned and it would be a specific protocol much like a treatment chart that would signed off each treatment. 

The only info I have had from any breast care nurse is the equivalent of what’s written on the side of the packet re side effects. I can’t imagine doing a nursing degree to discuss perfume free skin lotion all day.  Nothing useful and so far don’t even know my diagnosis or path results - the answer to everything is to ask someone else 😜 So my bad I didn’t write anything down back in September thinking I would be given a record of my diagnosis. I’ll live with that mistake  and hope they know what they are doing and put shared care and patient centred down as major BS designed for quality accreditation. There’s plenty worse that can happen in this world.
I did go to see my GP last week and she didn’t know - she has some correspondence but few
test results like bone density or my
blood work. said I should ask the oncologist. 
As ever I appreciate the replies and good wishes. It feels like absolutely nobody else gives a damn about  what’s on my mind but  the folks on this network.  🙏

@temple My GP has asked me to be sure that he is included to be notified whenever I have any tests as that way he has a complete picture.  Many oncs don't like to do that as they are concerned that GPs don't know what is in the normal range when undergoing treatment.  If your doctor is not available, can you contact your clinic and ask to speak to someone who can go through your notes with you?  As I understand it, this is part of what the breast care nurse should be doing but like you, I haven't had much experience of one.

Gosh, you’ve been let down a bit @Temple

your GP, surgeon, Oncologist and Radiation Oncologist should ALL be on every referral/blood test/ scan etc that is written for you since your diagnosis, surgery & treatment plan.  If you change any of your medical team, they should be added/ removed from the list. 

Re radiation .... usually this is a discussion, not a written thing ... hence recording all meetings is good, to go over it again later and take detailed notes of what was said.  They SHOULD send a report to your team as well.

SO, Every time you see any one of your team, they should send a report to all the other members so that they are all in the picture.  One may ‘pick up’ on something that the others may miss. It may be worth having their names written down in your journal, to remind them when you see them.  Make sure you have their full first names and suburb they practise as well.  My recent yearly scans and mri last month were sent to the wrong specialist as they sent it to a local doctor, not my surgeon in Sydney!

Sadly, many of us (particularly those in rural areas) haven’t had the use of a breast care nurse to help guide us and answer simple questions.

Contact your GP/surgeon’s office and request a copy of any other results including the reports on each, as you already have your pathology report.  Your GP and/or specialist should talk you thru every report.  I always request a copy of my bloods as well, just for comparison with earlier ones.

i have a big box that all my ‘cancer stuff’ gets put into, so it is all in the one spot .... X-rays, ultrasounds, scans, reports etc.  then they are easy to find when you need them (you are expected to take your most recent scans with you, to the next one! (Even if THEY were the ones who did them!)

all the best xx

Hi @Temple  when did you have your lumpectomy?  A week or two post that your surgeon should provide you with a pathology report and discuss the results with you.  After this, treatment is likely to be handed over to your medical oncologist who is in charge of chemo (if you need it) and all medication, and a radiation oncologist who manages your radiation plan.  FYI I had my lumpectomy in early July but didn't have radiation until October and I was only contacted by the radiation team in September.  I believe you have to wait at least 6 weeks post surgery to have radiation, longer if you decide to have brca gene testing done and need to wait for the results.  Best of luck!

Also, having read some of your other comments... you are correct in saying that you shouldn't have to be the one to remember your results off the top of your head!  Your surgeon, medical oncologist and radiation oncologist should be communicating with each other.