Just had the letter that the surgeon sent doctor.....I had a mucinous carcinoma which was ER + PR+ and HER 2 neg ( but for some reason it needs retest)  now what all this actually means I have no idea but when you read it in black and white it all sounds so real and scary.......

Also just want to say what a lovely group of ladies you are....thank you all for being here....xxxx

I know what you mean about these letters. I am not someone who needs to know all the ins and outs of things so it is a little scarey but I am sure it is not as scarey as it sounds. 

Chin up it is gone now!!

Sometimes I think ignorance is bliss! I was silly and ventured onto dr google but soon shut the laptop lid...it made me go cross eyed! 

Yes, chin is up...chest out and soldiering on! Xxx

Eee Marlyn

we must all b the same lol. My thoughts exactly when I got my letter and my next step was google too! 

In reality that letter should contain the exact information that you have already had explained to you albeit in more clinical terms than the layman’s terms they will have used when the consultant spoke with you. 

Take the letter with you to your next appointment and ask them to explain it to you. My explanation was pretty much exactly what they had already told me..... but still felt worth while the ask :-)

now im not certain but I think HER can change.... which may be why they are repeating.... think a change happened with [@TwinTwo]‍. 

So try not to get too worried... most likely explanation is  it is what you have already been told. 

Take care lass x

Eee Marlyn

we must all b the same lol. My thoughts exactly when I got my letter and my next step was google too! 

In reality that letter should contain the exact information that you have already had explained to you albeit in more clinical terms than the layman’s terms they will have used when the consultant spoke with you. 

Take the letter with you to your next appointment and ask them to explain it to you. My explanation was pretty much exactly what they had already told me..... but still felt worth while the ask :-)

now im not certain but I think HER can change.... which may be why they are repeating.... think a change happened with [@TwinTwo]‍. 

So try not to get too worried... most likely explanation is  it is what you have already been told. 

Take care lass x

HER2 status can change over time (sometimes due to the cancer itself, othertimes due to treatment).

It makes sense when you think about it.  After all HER2 status isn't an indicator of the presence, or absence, of HER2 receptors as we all have HER2 receptors on the surface of our breast cells.  HER2 status is a 'scoring system' indicating the degree to which HER2 is overexpressed. So the pathologist will actually count the number of receptors on the surface of the cancer cell.  They 'score' it numerically and class a score of 0 or +1 as being HER2-, and +2 and +3 classed as HER2+.

It is known for cancer to change from HER2+ to HER2-, which makes sense, especially if treatment is targetting the HER2 receptors.  It can occur, but is much less heard of, for it to change from HER2- to HER2+.

Not sure why [@Marlyn]‍  would need retested, that suggests they have reason to believe there were errors in the first test, but what would indicate this I don't know.  Normally they perform one test and, if it gives a borderline result, they then perform the FISH test.  But I'd be surprised if they gave the result from the first test and then ran the FISH test, usually your doctor won't hear any results until they have their conclusion (even if this means a delay as they run further tests, as happened with me).  In my case they ran the FISH test because the first test showed HER2+ and they knew it to be unusual for it to change from HER2- to HER2+ so wanted to make sure.

Totally get what Marlyn means about when you read the letter though, it's bizarre seeing it all written down clinically.  Sometimes you do find out stuff you didn't know yet too (exact size of lumps etc.)

Nowadays, thankfully, HER2+ isn't quite the bad news it once was as there are now treatments to directly target that aspect of it.

LJx

Gosh, what a good reply...my surgeon also didn't know why it was being retested, she said it's rare for it to go from neg to pos ( although not unheard of) so of course I went into silly mode and imagined all sorts...then gave myself a smack and shake and put my mrs sensible hat back on.....it is what it is....just got to crack on.....

Hope things are going forwards with you lovely lady xx

Having had a sudden lack of any appointments (which was really quite disconcerting when I thought I was starting chemo soon) I have one tomorrow which I believe is to discuss further surgery.  I've updated on my own post rather than on here.

LJx

Something I cane across which may be interesting:

m.youtube.com/watch

Ah thank you so much LJ your posts are always so helpful and informative ️ Wish I could have had you sitting next to me when I was first  diagnosed so after every sentence you could say.....what he is actually saying and telling you is....   Thanks so much lass...hope your treatment starts soon. You are a lot of people’s rock on here while fighting your own fight. We know this and we are grateful x

Wow, very interesting! Xx