Second primary 10 years after first her2+ and er/pr+ BC

dpaula

In 2007, aged 43, I was diagnosed with a left 13mm grade 2 her2+ and er/pr positive BC with 4/10 positive lymph nodes: I had left mastectomy, ANC, FEC/Taxotere, Rads x 25, Herceptin x 18, Tamoxifen 2007-12, 2013-15; Letrozole 2015-17

In October I discovered a lump in my right breast which showed up as calcs on my review mammo in May - however, due to a mistake they failed to recall me. Winding forward I had a right mastectomy and SNLB 3 weeks ago. Pathology showed DCIS 30mm with micromet in one lymph node. However, they have not found any invasive cancer! They are going back to the sample to try and find it. The DCIS is er/pr neg so is different to my first primary.

In UK they do not test DCIS for her2 and I am very worried that they will not find any of the invasive breast cancer to test. My BS is saying that as it stands my treatment is finished with the mastectomy. She says they are not worried about a micromet and that she wishes the test had not found it which left me astounded although I know it is a grey area.

Has anybody else has a similar diagnosis to me - I was not sure whether to post this on the her2 forum? I am just wondering about whether other BS take a different view to mine.

Thanks for you all,

Pol xx

Bosombuddy101

Wow! Your BS wishes they had not found a micromet in the sentinel node? What course of action would that entail -- just wish it away? I would definitely seek out a second opinion. I'm fairly new to breast cancer, but I don't recall coming across DCIS with micromets to sentinel nodes. Is it possible there could be an occult tumor somewhere?

stephincanada

Do you know what the pathology was of the micromet? (Are micro mets too small to determine pathology?

KBeee

I would request a second opinion. I could be wrong, but if DCIS is not invasive, how did it invade the mode???

The MO should be making chemo decisions, not the BS

dpaula

Thank you all for your replies. They are currently looking at the sample again, they are going to cut it a different way and get another pathologist to look at it. Unfortunately, in the UK they do not test DCIS for Her2 and I think the micromet was too small to test. Obviously, I am very worried whether it was her2 positive or not as it is now er/pr negative.

I am finding having BC twice very hard to deal with although I know some ladies have had it 3 or even more times! I feel like it is catching up with me - I just want to be assured that they are doing everything they can. My BS just said I can't get BC again as I have no breasts although then she said they will check me in 6 months around the scar and lymph nodes - so of course I can get it again - it is just by then it will have spread! She also says my greatest risk is still from my first primary which they have definitely stopped treating - I was on Letrozole but that has been stopped as she said I am 10 years out and I have had another mastectomy so no breasts! My oncologist is at the same hospital and was part of the MDT which looked at my results - I do really trust her but am finding the 'no more treatment' difficult probably because I had so much treatment last time!

Sorry for moaning - but nobody really understands what it is like unless they have been through BC. Thanks for listening... xxxx

KBeee

Your BS is completely wrong. I had BMX with clear wide margins, and had recurrence locally, in 2 spots 14 months after chemo. It is rare, but it does happen, and your BS should know that. It only takes a cell or two. I had to push and get multiple opinions to get appropriate tests and treatment. You are worth it. Advocate for yourself and ask them tough questions.

Your cancer is already not "behaving" as expected so keep advocating for yourself to make sure you aren't brushed aside simply because they have not had a case like that and are making assumptions

dpaula

Hi KBeee

Thank you, of course you are absolutely right and I AM going to make sure that I push and advocate strongly for myself. Do you think my latest BC is unusual because of the difficulty in finding the invasive in the breast? I believe that there are increasing numbers of cases of contralateral BC nowadays because of improved survival but there seems to be little out there in terms of research. I am seeing her again in a month so I will be going armed with information - as the hospital have already failed me in not recalling me in May after the concerns on my mammogram, I will be pushing this fact and the possibility that the micromet might not have been there if I had been treated earlier before I found an actual lump in my breast.

Thanks so much for replying - it is much appreciated! xxx

KBeee

My mom had contralateral breast cancer about 23 years after her original cancer. It does happen. You just want to make sure that they cover all bases to make sure there is not an invasive component. Ask for copies of all imaging nad pathology reports, so that you can read them for yourself.

dpaula

Thank you Karen. I will make sure I do that!