Another question: Biopsy and ER/HER results

[Jill1998]

No you don't want to be done for GBH !!! Not a convenient time !!

[pecan]

haha Sue.  No, I don't want to hit anyone.

It's amazing how it helps to just tell someone

[Sue C]

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


......

[Jill1998]

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 .

[pecan]

Thanks Jill, I think the rant is over.

Yes, it is absolutely about control, which is probably why I told my FB friends.  The CP in this case is also a FB friend, so she should get information in the same way as anyone else.  Okay, maybe the rant isn't over yet.

In any case, I think I am going to use this delay in appoinments to ease my "best" friend out of the extremely intimate consultations.  I hadn't realised how much it bothered me until now.  Strange.

Hope you gave your husband hell!  🙂

At least he did it out of panic, and not out of a need to be important (read gossip).  My husband is also not taking this very well.  I think it's sometimes harder for the people closest to us.

[Jill1998]

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!!!!

[SueW]

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

[pecan]

And another thing, with regard to disclosure, maybe someone can advice.  I belong to a Guild of spinners and weavers and dyers.  I am on the committee.  My "best" friend is also on the committee.  Now I ought to tell you I have only lived in this area for about 7 years, having emigrated for Africa, and don't have many friends.  So I told my friend about the lump before I had even been to have the biopsy.  I told her I was scheduled for the biospy.  It so happens the same day I told her we were having a committee meeting, and she (without my knowledge) pulled the chairperson aside to tell her I might be a bit odd because I had a medical situation, i.e. a lump.  I didn't hear about this until I took her as my support person to the Consultation, and she said she had told the CP about my diagnosis (confidentially) and that I could expect a phone call from her.  Again WTF?????  I told my friend that the CP didn't have the right to phone me about my BC.

NOW... as I have been reflecting rather violently on the goings on I wonder if I even want this person to continue to be my support person.  Am I over-reacting?  I mean, to say something to a group of people as a matter of course isn't half as damaging as saying secretly... does anyone get this?  I am the only one to have that power!

Sigh.

I am losing control!

And this is all so damned trivial in the whole scheme of things.

[pecan]

Thank you for listening.

[pecan]

This is what's frustrating:  I am having MRI and CT scans on Wednesday, supposed to have Consult on Thursday.  The message I received on the phone said that seeing as I was having the scans on Thursday it would be too late for the Consult.  I was shouting at the answering machine, saying Wednesday, Wednesday!  lol

I really thought I had it together.

I, also, have been thinking about wound dressings, and I am allergic to so many that I usually just refuse them all.  So I phoned the doctor's office to speak to the doctor (GP not Onc) and got through to the nurse who knew all about my diagnosis, and it FEELS as if everyone else knows there, including office staff.  Oh boy.... I'm falling apart here.  I have been completely open about the BC, even posting it on Facebook for my friends only.  But somehow it still makes it MY diagnosis, so having it open for people I don't know to see seems somehow invasive.  I am a carer for my mother, and take her to Bingo on Tuesday mornings.  I have also offered to drive the people when they have outings, as my mother and a couple of others cannot get onto a bus, so I take people and wheelchairs in my car.  This cannot happen now, as I have appointments scheduled for the day they have arranged to go out.  So I had to tell the lady who organises it.  Next thing I hear my "$%£&^% mother saying very loudly from her table "She has breast cancer" so loud that the people at the next table all went silent and turned to look.  WTF???

[Jill1998]

OMG how frustrating when you are all geared up to see them this week ,is it because they want results back and to discuss them before they see you ?

[pecan]

Thanks Michele.  I hadn't thought that maybe the tests were done, but needed time to come back.  So I phoned my BCN and found out that the ER one has come back positive (subject to further tests), but the HER one takes up to two weeks.

THEN I discovered that there was a message on my phone postponing my meeting with the consultant, due to take place on Thursday, to the following Thursday, and it's sent me into a spiral!  So, according to my calendar, the pre op assessment will take place before the consultation.  This is messing with my mind.

[Mygel2]

Hi Pecan,

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. 

Michele xxx

[Jill1998]

The waiting for results is very hard.

[pecan]

Thanks.  It's the not knowing that's killing me. I see them again on Thursday, and by then I would have had the MRI and CT scans, so we'll know more.  I think I'll ask for a copy of mine, if I remember.

[Anniej]

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

[pecan]

I have two scans on Wednesday, and then the Doctor on Thursday.  We'll know a bit more by then.

Cathy

[Sue C]

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

[pecan]

Sue C - what were your official results?  Positive or negative.

I'm sitting here feeling rather nauseous at the moment.  I don't think it's anxiety, as I HOPE I'm coping pretty well.  (Tired of researching now.)  It's probably gall stones that my consultant said I probably have, and which will be confirmed with the scans.  I've lost 2.5kg from loss of appetite (37kg to go), and when I told my mother (I am her carer) I had to listen to a lecture about losing weight eating sensible foods.  TWICE!!!  The first time I controlled myself... the second... less said the better.  Of COURSE I am eating sensible foods.  WHO eats non-sensible foods after a diagnosis like ours?  Unless they are as well as sensible foods, of course.  I am going to buy myself a box of chocolates today, even though the thought makes me nauseous!

Cathy

[Jill1998]

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 .

[Sue C]

Hi Pecan

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

[PeggyCat]

Hi Pecan,

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.

Ruth xx

[pecan]

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?