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

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

Ooh Marlyn, that’s the same diagnosis as me! What are they retesting though? I’ve heard they check to make sure it’s pure mucinous rather than mixed with DCIS...

Hello mrsfingers, they said they were retesting the HER 2 - as it can sometimes change? Apparently if it changes from neg to pos it will mean chemo...so of course I am praying for it not to change. The letter also said there wasn't DCIS....

what treatment did you end up getting? Xxx

Just read your bio....you were strongly positive? How did you get on with chemo....what meds you on ? Xxx

Hey ladies - been snowing down here in Kent. So glad I'm not working or commuting as trains will be buggered. This country makes me laugh as coming back from Canada with the amount of snow and freezing icy weather they carry on like normal. It really is cold tonight.  

Had some pretty devastating news - hubby's brother who had cancer and has been fighting it well now has brain tumour. It has spread and prognosis isn't good.  Not a great start to the year. His was really far gone and in the thyroid gland, lung and back when first diagnosed so it is what it is and from day one were told it wouldn't be cured. He was in denial and I could see that. Sigh....it is what it is.

We all have to keep fighting no matter what stage we are diagnosed at and yes cancer does suck but live, love and laugh to the highest degree every single day. Keep soldiering on ladies - you got this.

Keep warm and keep well.x

They usually grade the ER and PR result and mine were 8/8 so the most strongly positive. This is a good thing as it means it will respond to hormone therapy as a means of preventing recurrence.

mucinous carcinoma is usually Er+ Pr+ and Her2-. It’s typically slow growing and does not often spread to lymph nodes or other distant areas. However mine had gone to 2 lymph nodes hence chemo.

if it isn’t in nodes you may get away with doing an oncotype test which will typically show a low risk of recurrence and hence no chemo. Generally speaking the prognosis for mucinous carcinoma is quite good.

im on fec-t chemo and it’s gone pretty well overall. I had brain fog with the fec but not so bad physically. T has been no brain fog but various different pains. So mind or body takes a hit but all doable overall.

after chemo I’ve got 3 weeks of rads. I’m also starting 3 years of zoledronic acid infusions (prevents spread to bones) and hormone therapy for 10 years...due to the strongly hormone positive thing this is another way of preventing recurrence.

Hmm interesting they never retested mine. As I understand it mucinous is normally her2 negative but...I shall ask! Xx

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