I have been reading and reading and reading the posts one here, and so many people can say what there ER and HER results are, from the biopsy. When i contacted my BCN on Friday I specifically asked that quiestion, and was told she didn’t have the results.
Does this mean:
They are negative
or they weren’t tested on the biopsy, and if so why would some have been tested and not mine?
This is me, going crazy.
Who else had to wait until surgery to find out the hormone status, and what was that status in the end?
From what I’ve read here it very much depends on your particular health authority and how quickly things can be tested. I found out about my ER/PR status at my first meeting with my consultant after the biopsy, i.e when I was first offically diagnosed. The HER2 results were not available at that time and it was a couple of weeks later until I got those. My original surgery was postponed as they wanted to do more tests so it’s possible that I wouldn’t have known my HER2 result until after surgery although in the end I did get to find that out before my first operation. No idea why tests are done at different times.
I honstly wouldn’t read too much into it. Unfortunately there seems to be a lack of uniformity across the country and it seems we all find out at different stages.
This waiting for the results is the worst bit. Once you are over this frustrating and stressful period it will get easier I promise.
I wasn’t told the official results until after surgery. Its not until they’ve operated that they will know exactly what they are dealing with. Also (and I hope I’m right by saying this) this becomes relevant with follow up treatment. To he honest I couldn’t tell you mine without looking it up, otherwise I would Google to much!For me, I just go by what the consultant tells me!
This is such a stressful time for you. Try not to read too much into everything. You will feel better once your treatment starts xx
I was told ER status when I had my first appointment with the surgeon .Didnt get HER result til after surgery .They told me they were tested for in different ways in different labs .Information seems to come in dribs and drabs which is frustrating .
Hi Cathy
Well they were positive, but I can’t tell you anymore than that. Would have to look it up! I know that sounds weird, but I’m better off not knowing. I’ve been through te whole treatment plan…surgery,chemo,rads and now hormone therapy. They’ve thrown everything at it and I trust their advice.
When’s your next appointment?
Sue xx
Hi Pecan, in my health trust the consultant gives you your results, not your BC nurse. After that initial meeting the BC nurse is available to go over everything and reinforce what you have been told. The results - grade, stage, Er, Hr status are important factors in determining the treatment pathway. I was given all this info by my lovely Consultant, who then explained why I was being offered what I was offered - everything including the kitchen sink!
As some one said, there does not appear to be any uniformity across the Trusts. You are also entitled to a copy of your pathology report if you ask for it. I haven’t asked for mine yet, but when I have crossed the finishing line I will do. Mine was an aggressive little blighter, and at the moment I don’t really want to know quite how aggressive! Never ask a question you don’t want the answer to, is my motto! X
Not every hospital does these tests in house, some have to be sent to other hospitals, so that is why some people get them more quickly than others. I live in Jersey so many tests cannot be done here, the ER/PR/HER2 tests are sent to UK. It took 12 or 14 days to get mine if I remember rightly.
You have every right to be angry though I have found my tolerance levels have diminished dramatically. This may work for you or not as we are all individuals … imagine your life with this friend or without this friend which is better for you if it is with try tackling them about the indescretion or you may feel resentfulif it is without walk away with your head held high. Since diagnosis I have lots of in my head scenarios sometimes it works sometimes it doesn’t but this is your health and should be your decision as to if and when you share x sending you a virtual ? hug x
Feel free to rant Pecan.Can you ring them re discrepancy with day of scans ,maybe you could still be seen Thursday ? I think the issue for you is “control " , so much in this process is out of your control and who you tell / when you tell is one thing at least you feel you have some control over .I kept my diagnosis very private just a few friends ,colleagues and close family but my husband was very distressed and had to take some time off work and told quite a few people there (people I don’t know ). We were standing in a supermarket queue a few weeks later and I this woman said hello to my husband then spent the next 10 mins staring at me in a pitying manner ,does she know about my cancer I asked ,” er yes she does says husband she’s one of my mangers ", total stranger knows my very private business that I haven’t even told a lot of my friends or my elderly Dad!!!
You need to feel comfortable with who you take to the appointments ,some people are a lot more skilled at getting the right balance than others and yes some find the drama rather "exciting "!!! .I just hated people I didnt even know knowing my business ,it just felt wrong,bit I guess husband needed to talk to somebody and didn’t have the outlet of places like this forum .Yes it’s very hard for them too .
Hi Pecan
Sorry just reading through this thread and wanted to add…the pre op just goes through the basics of height, weight, blood pressure etc so it doesn’t matter if this is done before you see the consultant or though not ideal. Also this is where you can talk about allergies etc. Please try to stay as calm as possible ( I know, you probably want to hit me now!) . It will get sorted, I promise.
Sending a hug xx